Make an Entry to Chatroom BlackBoard for Pheochromocytoma Subjects - Back to First Page
Posts
Year 1999 ||
Posts
Jan to Jun 2000 ||
Posts
Jul to Aug 2000 ||
Posts
Sept 2000
Posts
Oct to Dec 2000 ||
Posts
Jan to March 2001 ||
Posts
April to May 2001
Posts
June to July 2001 ||
Posts
Aug to Dec 2001 ||
Posts
Jan to May 2002
Here are the most current messages written:
How I found your page: From a search engine
Comments about the web site: Hello, I have been reading for a while
and really enjoy the information..I would like to tell you about my Pheo..I
had episondes of Heart pounding, sweating and severe head pounding off and
on for months. This would only happen at night..I went to my PCP and she
did a CAT scan of the head, and blood work, all was fine...Well , I decided
nothing was wrong until one night in March, I had worked all day, been to
a friend's for dinner and after going to bed I had severe left flank pain..I
am single, so I called for an ambulance..I was crying and in severe pain..As
I am a nurse, I thought kidney stone..After being in the E.R. for hours ,
a resident comes out ot inform me that I have a huge tumor on my left kidney
and it is malignant, but due to my bloodwork is off and thin, I would have
to go to ICU until they could stabilize me...Well my sister who is a nurse
came in from out of town, thank God ,because I was on Morphine for 12 days
and do not remember a thing. They told her it was renal cell carcinoma, and
after a week in ICU, I had the surgery..Well, they said it was not renal
cell, they saved the kidney, and that there had been 2 bleeds, one was old
and a new bleed from the tumor that was on the adrenal gland.. My blood pressure
botomed out in surgery and they had to use emergency meds..Well the path
came back Pheo..I had an MIBG a week later, the day after I was sent home,
MIBG for 4 days, showed hot spots on the kidney and around the spleen. The
urologist and the oncologist said it could be due to the recent surgery,
they were not sure, so they referred me to M.D. Anderson in Houston..I went
last week, My 24 hour urine showed evidence of the Pheo and so did the CAT
scan, so I am scheduled for surgery on the 17th of this month...I loved the
docs and staff there, they were very good and seem to know what is going
on..they said my pathology did look suspicious, but that they do not think
this is a new tumor, just part of the old one..I am on Alph and Beta blockers
in preperation for surgery and boy they make me so weak and tired. I am also
seeing a Hematologist to find out why my blood is thin to prepare for
surgery...COuld someone tell me if this shows to be malignant what treatment
is? They told me that they determine if it is malignant by recourrance..The
tumor is very close to the renal artery, he said he would try to not have
to take the kidney, it would be a long surgery and the only one he would
do...I wish the last surgeon would have gotten it all, but he did save my
life as I was bleeding, and it was a big mess in there, so at least he bought
me some time to get to more experienced people..Any input would be nice...Oh
my only child, Shanna had my first grandchild while I was in the hospital..Bless
her heart, she did not have me with her, but she did great..Mom and baby
are fine, they live in East Texas, 8 hours from me..I live in Lubbock Texas.
I was surprised that the oncologist here did not know much about Pheos, he
trained the man who one the nobel prize for bone marrow transplant..he was
honest with me though and I do appreciate that. Please if anyone could tell
me if the pathology is ever real clear about malignancy and what treatment
is being done..Thanks,Scharla
How I found your page: From a search engine
Comments about the web site: I am not seeing my entry..If it went
to the wrong place, please forward it to the post.>Thanks,Scharla
How I found your page: From a search engine
Comments about the web site: I've ben seeing an endocrinologist for
autonomic dysfunction - palpitations, profuse sweating, overheating, weakness,
breathlessness, for 1 1/12 years. I have been through unbelievable testing
over the past 4 years, by neurologists, gastroenterologists, pain specialists,
opthalmologists, etc., for a variety of problems and have been diagnosed
with spinal problems, eosinophilic fasciitis (very rare), macular amyloidosis
(very rare), and now I've learned that my metanephrine, normetanephrine,
epinephrine and norepinephrine and VMA are all significantly elevated. I'm
scheduled for a MIBG scan next week. I know the endocrinologist suspects
pheochromocytoma. Does anyone have direct experience with this? What do you
think? What can be done for the constant sweating/overheating? Surely I won't
have to live with it forever... My life has just about screeched to a halt
over this. Thanks.
How I found your page: From a search engine
Comments about the web site: I am a 41 yr old overweight female. About
9 months ago I began experiencing excessive sweating while walking in grocery
store, working in the kitchen etc. My uncle and aunt both have had this disease.
Now my blood pressure is up 165/105 and sometimes higher, can this disease
just "spring-up"
How I found your page: Member
Comments about the web site: Dear Friends, I wanted to let all of
you who are my close friends online know that a diagnosis has been made in
my constant small bleeding and "sleeping sickness" with fever symptoms. I
have bladder cancer. I plan to fight this, as I have other illness. I'm not
depressed, and I feel fairly strong about it. I wanted to let you all know
something of my update. With love, Mary
How I found your page: From a search engine
Comments about the web site: My 20 year old son has severe HBP 180/120.
Anxeity symptoms, GI pain, vomitting most every morning and diarrhea very
often every day. The doctor initially put him on BP meds, wanted him to take
Paxil for anxiety and felt the BP was caused by GAD. A month and half later
he admitted there was something going on with the pain and ordered CT scan.
Sent him to a GI specialist for colonoscopy after hardened area on left colon
seen and soft prostate. The GI specialist wants him tested for pheochromocytoma,
as a 20 year old should not present with 180/120 and sent him back to primary
MD. Primary told him, no pheo is rare but he'll wean him off Atenelol and
get urine 24hr test in 2 weeks. I don't have much faith in this MD and wanted
to know if there is anyone in the Tempe,AZ (Phoenix area) that would be better
able to help Bryan get the help he needs. He missed paid disability by a
few days , although he has medical disability holding his benefits and job
return. These delays and the vomitting, pain, anxeity attacks are hard to
deal with not counting loss of time with no pay. He gets the headaches, pallor,
sweats, chest pain but the daily vomitting and diarrhea disable him. Any
help? Does this sound like pheochromocytoma and who should he see. Thanks,
Patricia
How I found your page: Member
Comments about the web site: The messages of January to May 2002 can
now be found in Archive links at the top of this page.
How I found your page: Member
Comments about the web site: Joyce - I was unable to get a message
posted here for you yesterday and have e-mailed you directly. Please feel
free to e-mail me if you didn't get it, or if you have further questions.
Judy
How I found your page: Member
Comments about the web site: Patricia - I have e-mailed you directly
with the names of Arizona doctors from our doctor listing. Judy
How I found your page: From a search engine
Comments about the web site: Has anyone had a PET scan to determine
a pheo? I am having one next week. None of my lab tests(have not yet had
plasma metanephrine) or scans(CT, MRI, octreo, MIBG) show anything but an
elevated Cga. Also being looked at for other neuroendocrine tumors like
carcinoid. Does this sound familiar? Julie
How I found your page: From a search engine
Comments about the web site: It has been over a year since I lost
my mother Vinnie! I stumbled onto this site through sheer dumb luck-she had
bookmarked it! I can't tell you what it meant to me to read her letter to
Robin! It made me laugh and cry! I of course miss her but that letter made
me remember how strong and funny she was! I hope you all read that letter
it is very well written and informative in my opinion (although I may be
a bit biased). I very much appreciate y'all leaving her letter up for others
to read! -Guion
How I found your page: From a search engine
Comments about the web site: First I will tell you a little about
myself and my circumstances. I am a 27 year old mother of 2 ages 7 and four
months. For years I had dealt with severe heart palpitations and headaches.
I had been told that it was either imagined or some form of anxiety disorder.
After the birth of my oldest I experineced sever hypertension. I was told
that it was post-partum preeclampsia and was put on medication for a short
period of time. The hypertension subsided but the palpations were ever persistant
and the headaches never left me. With in 3 weeks after the birth of my youngest
I was back in the hospital with the exact same symptoms only this time there
was no medication that could seem to control the hypertension. It was decided
that I should have a MRI and that was where they found a very large tumor
that appeared to be on my pancreas. Thanks to a wonderful surgeon who had
recognized the symptoms more testing was done and it was diagnosed as a pheo.
In April I underwent a laproscopic adreanalectomy. Once removed, my tumor
weighed in at well over 500 grams. I just received the news that my vma urine
test came back good, but what I am wondering from others is where there any
physical changes that they felt after the tumor was removed . I would appreciate
any advice and stories. Thank you for a wonderful web site that helped my
husband I through so far.
How I found your page: Member
Comments about the web site: Amy - I've responded to you by e-mail
... Judy
How I found your page: Link from another web page
Comments about the web site: Hi there... I am a 31 year old female
who just yesterday was diagnosed w/Pheochromocytoma. My systems were
hypertensia,excessive sweating and heart palpataions. My doctor was really
shocked when he figured out my diagnosis since it's an uncommon disease.
I am kind of scared of what is going to happen next. Right now I am on Minipress
1mg to help control my high blood pressure. I am also doing the 24 hour urine
test. If anyone has any words of encouragement I sure could use it!!
How I found your page: Other
Comments about the web site:
How I found your page: From a search engine
Comments about the web site:
How I found your page: From a search engine
Comments about the web site:
How I found your page: From a search engine
Comments about the web site: I am 30 years old, and have just been
through the following....2 years of severe night sweats (drenching clothing
and bedding) increased headaches, increased blood pressure (moderate) and
occasional palpatations. The sweating is really only at night. occasionally
it will occur during the day, but not often. i saw many many primary care
docs, and many many obgyn's finally found my way to a reporductive
endocrinologixt, who referred me to my endocrinologist. 24-hour unrine showed
increased levels of epinephrine, normetinephrine, norepinephrine, and
metanephrines (at least x2). went on to plasma tests...plasma tests also
show elevated levels...particularly norepinephrine... onto adrenal mri (now
the docs are talking about pheochromocytomas). the mri showed clear and normal
adrenals. symptoms continue and docs are going to schedule mibg. One doctor
wants to do another plasma test and we do (laying quietly for about an hour
etc etc). these results are close to normal. now my endocrinologist says
that we won't go forward with mibg, and that there must be something else
wrong. believe it or not, we're going back to thyroid testing! it isn't that
i don't believe in my doctors, they have been pretty good so far...i'm just
curious to hear from you with experience...is a second plasma test that is
more normal (still a little elevated on some, i haven't seen actual results
yet, just got that call yesterday)but not as elevated as the first reason
to rule out a pheochromocytoma? my symptoms are about the same, no increase
in severity, but no decrease either.... what should i be doing, asking, etc???
thank you in advance...by the way...this website is wonderful! sarah
How I found your page: From a search engine
Comments about the web site: Does anyone know if wearing your wedding
rings and other rings during a MRI will make the results turn out wrong?
I had a MRI done for Pheo and I forgot to take off my rings and they forgot
to tell me, I didn't realize it until I left. Thank you.
How I found your page: From a search engine
Comments about the web site: I WOULD LIKE TO THANK ALL OF YOU FOR
THE SITE...IT HAS BEEN VERY INFORMATIONAL FOR ME..I HAVE JUST BEEN TOLD THAT
I MIGHT HAVE PHEO..WAS LOOKING FOR ANS..YOUR SITE HAS HELPED ME...THIS WAITING
IS DRIVEING ME CRAZY...WOULD LIKE TO JOIN YOUR GROUP...WOULD LIKE TO CHAT
WITH YOU
How I found your page: From a search engine
Comments about the web site: Hi thanks for such an informative site.
I am 24 years old. I was diagnosed with pheo about 2 months ago. I have had
syptoms for about 3 years. My symptoms include anxiety #1, high blood pressure,
hot flashes, palpitations and headaches. My ct scan of the abdomen was normal.
I am seeing a Nephrologist this week. I feel certain this is what I have.
I feel my symptoms have been put off for years. My bp has now stayed at about
165/110 for about 2 months. I am very concerned about this. I am wondering
if the Nephrologist is neccisary? Does anyone have any advice on further
testing to locate the tumor. Also, I live in Atlanta, GA. Can you reccomend
any M.D.'s in the area. Thank you for taking the time to read this. God bless
you.
How I found your page: From a search engine
Comments about the web site: I have a brother that is 47 recently
diognosed with Lung Cancer that has spread to his brain. He is not doing
to well at this time. His lack of appitite has him shrinking down to nearly
nothing. I don't know the proper names for his treatments but he underwent
14 radiation treatments in Charlotte, NC before we moved him home to Portland,
OR to be with family, where he has just started chemotherepy there last week.
Any advice would be greatly appriciated Brian
How I found your page: From a search engine
Comments about the web site: Hi Everyone, It is me again...well the
pheo has been confrimed...go for my MRI Fri...still don't know what the "Cyst"
on the ovary is yet, guess we will find out Fri., not to sure when surgery
is going to be yet. I go back to the doc on the 24th, I guess we will talk
about it then...well at least now I somewhat is going on now...I am still
scared about it all right now though...Thank you so much for your web site,
it has really helped me...still would like to hear from someone .... take
care and God bless you all...
How I found your page: Member
Comments about the web site: Debbie - I understand your fear of pheo
diagnosis. The good news is however that most people feel soooo much better
after having the surgery. You'll feel like your old self again. How was your
diagnosis made? Judy
How I found your page: Member
Comments about the web site: Hi to everyone. I'm back from testing
and treatment. Good news: I do not have cancer. Bad news: I do have a tumor
and kidney mechanism failure. I'm not sure where this is headed, but I plan
to get it all fixed and taken care of over the next month. I want to thank
all of you for your kind thoughts and prayers. It means a lot to me. Love,
Mary
How I found your page: Member
Comments about the web site: Mary - It's good to hear from you. I
hope things go well for you over the next month. Judy
How I found your page: From a search engine
Comments about the web site: Hi My name is Eileen and I found your
site while looking for pheochromocytoma, and find it very interesting. My
husband has a phoe on his left adrenal gland. He has a previous history of
cancer of the oesophagus and had surgery in November 2000 when they removed
part of his oesophagus and part stomach, and because two our of four lymph
nodes were affected he had to have chemo. He had been weak ever since and
get having bouts of cold sweats and nobody took much notice, but then a scan
last year showed a shadow on the adrenal gland but again they didn't think
much of it because it hadn't changed since chemo, but in January this year
they said it had grown slightly, and when we went back for a check up in
May we decided we wanted it investigating, as he wasn't getting back to fitness.
They took him into hospital on the 25th June as they said he had a pheo of
the left adrenal gland and they put him on beta blockers to get him ready
for surgery. Last week we saw the surgeon, but because of his previous surgery
which he performed it is not straightforward and he will have to think about
how to attack it, and he wants his best anaesthetic their when he does the
surgery in case anything goes wrong. He said if it had been on the right
he could have done key hole surgery, but because it is on the left and past
surgery it is more complicated. He is still on beta blockers and they are
waiting until his nose blocks, because then they will know if if he ready
for surgery, but they keep increasing the tablets which is making him so
weak, he just wants to sleep all day. Will keep you informed of any developments.
Regards Eileen
How I found your page: From a search engine
Comments about the web site: Hi Judy and everyone, Just wanted to
let you all know what is going on now. I had my Dr.'s appointment yesterday
...I was pretty sure that we where going to talk about surgery....Well nope
not yet, she wants another, it is the one where they are going to insert
a cath and do the blood hormone level, since she thinks that I have 2 pheos
to see which one is secreting the hormones, and to see where it orignated
from...she has to find a radiologist that will do the test and she is still
looking for a surgeon too. I really wished that it was over with...all of
this waiting and wondering what is next is getting to me. I am not working,
so I have a lot of time on my hands...I am having trouble with my vision,
I have always had 20/20..now it is hard for me to focus at times..hope that
will get better. so that also means that I am not driving either, do not
want to take a chance on hurting someone...I would like to again thank you
for this site...has really been helpful to me... Eileen, I wish you the best.
hang in there, and my God bless you... Everyone keep up the good work...
Take care, Debbie
How I found your page: From a search engine
Comments about the web site: Please tell me what you think. In 1997
4 episodes of hypertension 230/110 with severe headache. Finally diagnosed
with high blood pressure and put on Toprol 50mg. Diagnosed with Diabetes
in 1998 contolled with Glucophage once a day. My oldest son had a neurofibroma
of the ulna nerve. Now he has hypertension. I have severe night sweat always
about 3 o'clock in the morning. I have started taking a xanax to sleep through
them.Blood sugar checks out ok BP ok Heart rate at 145 during these episodes.
I also have Peptic Ulcer Disease and have had a stent placed in my Ilac artery
due to a 90%blockage. Every time the doctors try to get me off of the Toprol
on to another med my BP go wacko. In April I was on Norvacs, Altace and 50
of toprol and my blood pressure was 180/100, I also had pitting edma and
so they suggested I was in congestive heart failure. Heart Cath was normal.
I live in a small town and have to travel 2 hours one way or the other to
go have major test done. I stayed off of my Blood pressure med for a week
had a 24hour urine done and was told it was normal and then was told results
unreliable because of the meds I was on (had been off for a week) I put myself
back on my Toprol 100mg/day and lost the edma and BP is back under semi control.
The doctors say it is panic attacks. I don't think so. Could it be a pheo?
One more thing, narcotics don't work on me like they do most people and the
Cardiologist said I must "play with drugs" I DON"T! Never have. Please tell
me what to do, I live in south east Georgia, close to nothing.
How I found your page: Link from another web page
Comments about the web site: in past five years i have had two pheos
removed and current norepinephrine blood test indicates i have another pheo.
i have developed severe bone pain in my arms, ribs, and hips. my endo says
it is just arthiritis, however, it does not feel like the arthiritis i know
i have in my knees and feet. has anyone else with pheos developed bone pain
and have found a cause for it? thanks for your help.
How I found your page: Member
Comments about the web site: Ed - My oldest son was diagnosed w/metastatic
pheo at age 23. When he was in high school he often complained of achey hip,
knees, and shoulders, but figured it was due to aggressive soccer games.
We've since learned that he has numerous bone lesions, with a heavy concentration
in the hip and shoulders. While it's hard not to, we can't assume that all
aches and pains are pheo related and certainly arthritis could just as easily
be the problem. Perhaps a bone scan may be in order? Best of luck, Judy Debbie
M. - Thanks for the update. Hang in there...sometimes these things take a
while to figure out. Take care, Judy
How I found your page: From a search engine
Comments about the web site: Having just experienced a period of elevated
BP, sweats, vomiting etc, The MD suspects pheo and I am undergoing testing
right now. The mass on my adrenal is 5 cm and I need surgery. Question is:
Can you tell me which doctors are operating on adrenal masses?
How I found your page: Member
Comments about the web site: I haven't posted for a while, although
I have been lurking. I had a pheo diagnosed in August 2000, removed October
2000. I have done great since then. Since my doctor failed to diagnose it
and it was only discovered after I was rushed to a different hospital via
ambulance with a bp of 260/160, I filed a complaint with the state Licensing
Board against the original doctor. I finally heard from an investigator on
Thursday, who gave me news that still has me reeling. It turns out that I
was tested for pheo back in 1996 when I first started having symptoms. I
tested positive. BUT, the lab never told the doctor!!! So I went for four
years being told that the episodes I had were "panic attacks", until doctors
at the second hospital finally got it right! The investigator still hasn't
figured out exactly who dropped the ball, but they have widened the investigation
to include not only the original doctor, but the cardiologist who ordered
the test and the lab. I think this needs to serve as a lesson for all of
us, as well; if you have lab work done and don't hear anything back, make
sure you follow up and get an answer!
How I found your page: Member
Comments about the web site: Susan - That sounds so unbelieveable,
but yet we have seen a few cases where someone reviewing old records has
come across a problem that they hadn't been informed about. I'm so, so sorry
that you had to go through those 4 years needlessly. Thanks for sharing this
tidbit so that others become more aware of such possibilities and the need
to know how a test turned out, and not assume that no news is good news.
Good to hear from you! Judy
How I found your page: Member
Comments about the web site: Joel - Here is a link that has been put
together for doctors. If you look on the "blackboard" section of this site
you'll find a topic heading something like "pheo doctors, tests, ...". This
is a great place to find all kinds of info. The doctor listing is at
http://www.travelin-tigers.com/zlyn/ezpheodc.htm (hope I did that right!).
If you don't see a doc for your area, let us know where you're at and we'll
see if someone can help you. Judy
How I found your page: From a search engine
Comments about the web site: After undergoing numerous test for pheo
(CT scan, MIBG scan) my symptoms of erratic surges in blood pressure and
pulse rate have been totally eliminated for over a year. I took just one
type of tablet - has anyone else experienced this ? Mike
How I found your page: Member
Comments about the web site: Mike - Can I assume that your tests were
negative for pheo and that the one little tablet was for the BP? If you have
a little tablet that takes care of pheo symptoms there will be a lot of people
trying to track you down! Judy
How I found your page: From a search engine
Comments about the web site:
How I found your page: From a search engine
Comments about the web site: 8-2-02 Yesterday I was diagnosed with
pheochromocytoma. It was such a relief to find the site with other people
who have the same symptoms and that I am not crazy. My symptoms started 15
years ago and I am now 50 years old. I had a CT scan several months ago and
the tumor was there. I have a wonderful endocrinologist who did all the testing
that led to the diagnosis. I just discovered the websites yesterday and I
am learning about my disease. It is scary but at the same time comforting
to finally find out what is wrong with me! Soon I will be going to Mass General
for surgery. I have only used the computer for shopping so this all new to
me!
How I found your page: Member
Comments about the web site: Leslie-While I'm sorry you've a need
for our site, welcome aboard anyway. Our youngest son had a pheo removed
at Boston Childrens Hospital. While I'm not familiar with the docs at Mass
General I know that it's an excellent facility and that you should be in
good hands. Please continue to post, ask questions, and let us know how you're
doing. Judy
How I found your page: From a search engine
Comments about the web site: We just found out that my girlfriend
may have a pheo and I was just trying to find out about it and who the best
doctors are. Urine tests show she has it. She had a CAT scan today. We thought
a PET scan was the best, but I read an MRI may be the best. I saw some people
talking about another type of scan, it had four letters with a G in it. What's
that about? We live in a rural area and want to get the best doctors we can
afford. Can anyone help? We live in Northern CA. Also, I could not view the
article on your web page "Recent Advances in Genetics, Diagnosis, Localization,
and Treatment of Pheochromocytoma" I could see the others, but not that one
which was the most up-to-date research.
How I found your page: Member
Comments about the web site: Rod - It's hard to say which test is
best as each case is different. My understanding is that the CT has a clearer
image but that the MRI is better able to pick up smaller tumors. The scan
you asked about is the MIBG scan...this is a nuclear scan where the patient
(after starting on meds to protect the thyroid) receives an injection one
day, and has a scan the following day. The isotope injected has a marker
that gets absorbed by tissue that identifies pheos by hi-liteing them on
the scan. For some reason not all people are sensitive to this and tumors
do not absorb it. If the CT shows nothing than the doc will probably want
to do either the MRI or MIBG scan. If you look at the home page of this site
you'll find a "blackboard" for sharing info. On Page 1 of this blackboard
is a topic "Pheo Doctors, Links, Tests and Definitions". Look around this
topic area and you'll find links for doctors, tests, and many articles related
to pheos. It's a great accumulation of info and I'm sure you'll find it very
beneficial. You can scan the other topics on the blackboard and get a lot
of questions answered. Best of luck to you and your girlfriend. Judy
How I found your page: From a search engine
Comments about the web site: Hi everyone, Just to give all an update
on what is going on with me. The endo doc decided to do a clonidine suppression
test, had that done this past Mon. I got a call from the endo's nurse, lab
called not enough plasma to run the test, and the doc would like for me to
do the test over, that is going to be on the 19th. On the 20th, I have 2
appointments with 2 different surgeons to talk about surgery ( I have 2 pheos
) one on the adrenal gland, and one in my abd, so the endo doc isn't sure
that the surgeon that she wants to do it will do both. I sure am hoping that
he will. Snice the 2nd surgeon dosen't go to the hosp that I would like to
go to... So I am waiting again.. Thank you all for the support...and keep
your heads up... btw I am from Indiana...take care, Debbie
How I found your page: Member
Comments about the web site: G'day to all, Have not posted for ages
but just wanted to let you all know since my surgery I have been great. I
have now taken up walking and do approx. 10km. a day. My B.P. is still normal
and have follow-ups with my doc. every six months. i have to agree with Shane
(Australia) that our doc. are the best here. My best wishes to all those
not feeling the best but remember positive thinking and good docs. are the
best remedy. Take care
How I found your page: From a search engine
Comments about the web site: i was so pleased to find this site i
felt i must write in. Doctors found my pheochromocytoma in 1993 when i was
just 17 and 7 months pregnant. i had it sucsesfully removed at the john radcliffe
hospital in oxford england and although my little girl was born 9 weeks premature
she is now 8 and doing great my worry is that while i was pregnant with her
i may have passed somthing to her and she my suffer from the same thing she
is very thin as i was and she sweats a loy just as i did but when i ask my
doctor he says there is nothing to worry about but i can't help it i never
want her to go what i went through. my pheo was in my chest so i chose to
have it removed from the back and still have 2 and 1/2 inch's of my rib
missing> Also does anyone else still feel symptoms somtimes even though
all my tests come back clear every year. love emma
How I found your page: From a search engine
Comments about the web site: Hello everyone. I have not posted anything
in awhile so I don't want to alarm anyone things are ok, just here to update.
My name is Julie for those who are not familiar and my dad has meta pheo.
He's gone through the 3 rounds of the experimental Yttrium treatment. Results
showed no major improvement, but no significant new growth either. We are
meeting w/ a local oncologist currently discussing chemo (CVD) treatments
but its nothing he'll have done right away. The current plan of action is
to keep an eye on the pheo and his heart which has not faired well through
all of this. It has been 2 yrs almost since he was diagnosed and had the
first operation and I am very thankful that my dad is feeling good right
now. I hope this note finds the rest of you in happy health. Take care all.
Bye. Julie
How I found your page: From a search engine
Comments about the web site: Julie - Thank you so much for the update
on your Dad. I am sorry the treatment wasn't more successful. It seemed so
promising. I am relieved to hear that there has been no significant new growth
and that he seems to be feeling well. Have you heard anything about the results
for the other pheo patients who were enrolled in the same treatment study?
How I found your page: Member
Comments about the web site: Julie - Thank you so much for the update
on your Dad. I am sorry the treatment wasn't more successful. It seemed so
promising. I am relieved to hear that there has been no significant new growth
and that he seems to be feeling well. Have you heard anything about the results
for the other pheo patients who were enrolled in the same treatment study?
How I found your page: From a search engine
Comments about the web site: Hi everyone. Thanks for a great website.
I am 25 and have just been diagnosed with pheochromocytoma. After reading
all of the tests everyone else has gone through to get their diagnosis, I
am wondering if my doctors have been thorough in their diagnosis. I was diagnosed
with a pelvic mass (7 cm) in the vacinity of my left ovary through a pelvic
ultrasound. I've had symptoms off and on for several years--hypertension,
headaches, palpitations, constant uncontrolled sweating, anxiety attacks,
nausea, fatigue...you name it. I have since had a CT scan, renal scan and
the 24 hour urine test (which diagnosed the pheo). I am currently taking
dibenzyline for 14 days, and then will have surgery. As far as I know, my
surgeon has not performed surgery for a pheo before. Can anyone give me guidance
on what questions I should be asking before surgery? Any information will
be appreciated. Thanks!
How I found your page: Member
Comments about the web site: Gina- An important question to ask is
if the anesthesiologist has had experience w/pheos. The concern w/surgery
is the bp spiking and it is imperative that the surgeon, anesth., and staff
are knowledgeable and prepared for any such emergency. The dibenzyline you
are taking is to "block" the surges of adrenaline thereby avoiding these
spikes. Best of luck, Judy
How I found your page: A friend told me
Comments about the web site: Hello. Friday my boyfriend was diagnosed
with this tumour, it is now about 12cm in size. He will lose his right adrenal
gland & his kidney if it has been compromised. He will be having open
surgery as its too big for laproscopic. I am trying to stay calm and wait
& see what the biopsy results are. Any words of wisdom, personal experience
or insight would help. What about the surgery itself? How long, complicated
& recover time? Thanks for your help. Debbie
How I found your page: Member
Comments about the web site: Hey everyone- My step-mom died around
Christmas of last year from pheo. Eight years ago, she had pheo, and had
it removed, but her DR. told her that it was all gone and never called her
in for a check up to see if it was still there at all. We all miss her very
much, and are frustrated b/c we know that to some extent, her sickness could
have been prevented. PLEASE go in for check ups even after your DR. clears
you! Thanks!
How I found your page: A friend told me
Comments about the web site: Has anyone on this board had a large
(12cm) size tumor surgically removed? I'm wondering how the surgery went
& recovery pain, timeline...Thanks
How I found your page: From a search engine
Comments about the web site: I've found this a great sight. Maybe
someone can help me The dr. found a tumor on my left adrenal gland says its
nothing to worry about but I have had very high blood presure,keep changing
my meds,have headaces, dizzy like i will passout,weakness all the time. had
heart cath no blockage good heart. Whatcan I do to see a Doctor for my tumor
without a refurral can you help?
How I found your page: From a search engine
Comments about the web site: Hi, thought I would just update you on
developments with my husband. They took him in hospital to get the adrenal
gland under control before operation on the 25th June, started him on
Phenoxybenzamine and Propranolol, he was in and out of hospital for three
weeks, letting him out at the weekends, hoping to operate in July. Unfortunately
they have now told him he will have to wait until 17th September because
of the holiday season to get everyone together to do the operation. They
will try key hole surgery but may revert to surgery. He hasn't seen a medical
doctor since he was discharged from hospital on the 15th July and taking
Phenoxybenzamine 8 tablets a day and Propranolol 40 mg twice daily, which
is making him feel ill, weak, tired coughing, wheezing, breathless, worse
than before. I have just rung the hospital as they did mention he would get
an appointment for the medical specialist, but he seems to have got lost
in the system. Does anyone know how long he can stay on such a large dose
of tablets as his operation isn't until September? and is it possible to
come off these tablets until nearer the operation. Regards Eileen
How I found your page: Member
Comments about the web site: Eileen - Although the patient does feel
lousy, it is okay to be on that dose of phenoxy for a period of time. My
son was on 80mg 3x/day for over a year at which point they reduced it as
surgery isn't an option for him. It takes 2-3 weeks for this med to be at
an effective point, so at this point he should really continue it. It is
also important not to just stop taking this med. When someone comes off the
med, or reduces it, it has to be done by gradually reducing the med. Judy
How I found your page: Member
Comments about the web site: Debbie - When my son had his pheo removed
at age 12 it was about 8cm. I've read posts where others have had much larger
ones and these were safely removed. The surgery is long and complicated...my
son was in the OR for 10 hrs. His pheo was wrapped around the artery to the
rt kidney, and extended to either side of the vena cava. Going into the surgery
they were uncertain about saving his kidney but fortunately they were able
to. He had open surgery-thoracic/abdominal-and his incicision goes from right
shoulder blade, around the side and front towards the belly. He was only
in the hospital one week and ret'd to school on an assisted basis about 2-3
weeks after that. Recuperation does take some time, there is some pain, but
life is great afterwards. Judy
How I found your page: Member
Comments about the web site: Eileen...Not sure if it's the heat wave
in NH or me losing my mind, but my son's dose of phenoxy was 40mg 3x/day
(NOT 80mg), for a total of 120mg/day. I think that all of this just tends
to blur after a while. Good luck, Judy
How I found your page: Member
Comments about the web site: Cathie - The type of insurance you have
makes a difference on how to see a specialist w/o a referral. We have a
BlueChoice plan which allows us to see a specialist w/o going thru our primary,
but the co-pay is slightly higher. Is your primary refusing to give you a
referral? Judy
How I found your page: From a search engine
Comments about the web site: My epinephrine levels are too high on
last 24-hr urine sample. Have been tested on and off for 16 years. Have all
the symptoms and are getting worse. CAT scan scheduled. Is it possible to
have these symptoms for such a long time and yet have a tumor(s) which is
NOT malignant? My life has been very much affected by all the symptoms and
being sent from one doctor to another (cardiologists etc.), only to be told
that there is "nothing" wrong with me. I am now hoping it is pheo as at least
I will finally have a diagnosis and something might be done about it. I know
I will almoste be disappointed if it isn't pheo as we seem to have exhausted
all other possibilities and I can't go on like this. Anyone else have similar
stories? Nilya
How I found your page: From a search engine
Comments about the web site: My epinephrine levels are too high on
last 24-hr urine sample. Have been tested on and off for 16 years. Have all
the symptoms and are getting worse. CAT scan scheduled. Is it possible to
have these symptoms for such a long time and yet have a tumor(s) which is
NOT malignant? My life has been very much affected by all the symptoms and
being sent from one doctor to another (cardiologists etc.), only to be told
that there is "nothing" wrong with me. I am now hoping it is pheo as at least
I will finally have a diagnosis and something might be done about it. I know
I will almoste be disappointed if it isn't pheo as we seem to have exhausted
all other possibilities and I can't go on like this. Anyone else have similar
stories? Nilya
How I found your page: Member
Comments about the web site: Nilya--I have been told by doctors and
genetic counselors that "when" a pheo becomes malignant is unknown. My youngest
son had a "benign" pheo removed at age 12. He had symptoms for 3 years, but
according to the surgeon he had the tumor a long time...possibly even congenital.
My older son had varied symptoms for 10 years before being diagnosed with
metastatic pheo, but when I asked whether it could have been benign had we
caught it earlier they couldn't say. The genetic counselor had been part
of a study in which some patients had just a small single malignant pheo.
So can a malignant pheo be malignant to start with? They felt that seemed
to be possible and said there was no way of knowing if our son's would have
been benign had we found it before it spread. Best of luck to you. Judy
How I found your page: From a search engine
Comments about the web site:
How I found your page: From a search engine
Comments about the web site: It appears that my symptoms are worse
if I eat or drink anything that contains chocolate or caffine. The effects
kick in hours after I go to bed .. ususally hits me around 2AM and continues
through out the next day. I recently eat a Strawberry Zone Bar, only to discover
later that it contained cocao butter. Has anyone noticed that certain foods
trigger an attack?
How I found your page: Other
Comments about the web site: I was writing to you 2 years ago when
the symptoms started -- severe hypertension near stroke level that was un-
responsive to blood pressure meds or I was unable to take the blood pressure
med because of severe reactions. Sweating, pounding heart. My blood pressure
was so high I was ill. I have recently been diagnosed as hypopituitary -
for me, it is the anterior portion of my pituitary -- the FSH, LH and no
TSH (my pituitary no longer secretes what my thyroid needs). This is called
central hypothyroisism and treated just as primary hypothyroidism is, with
Synthroid or a similar med. Recently both my daughters were both diagnosed
as hypopit too -- central hypothyroidism. I had the NIH blood test in 2000
and it was negative; however, at my last appt a week ago, my family doctor
and I discussed repeating the pheo tests as I have had constant headaches,
severe hypertension, sweating and palpitations since July 4. At first, he
thought it was hyperthyroidism and we reduced my thyroid; now my thyroid
level is low so we know it is not hyperthyroidism (central hypothyroidism
-- you just look at the Free T4 -- the TSH means nothing)- your Free T4 is
supposed to be in the middle. Nothing is stopping the hypertension -- Is
there any thing new out there happening to diagnose endo tumors more easily?
Have any of you had multiple adverse reactions and/or allergic reactions
to blood pressure meds? Thanks for any help you can give. MaggieFuss@aol.com
How I found your page: Other
Comments about the web site: I was writing to you 2 years ago when
the symptoms started -- severe hypertension near stroke level that was un-
responsive to blood pressure meds or I was unable to take the blood pressure
med because of severe reactions. Sweating, pounding heart. My blood pressure
was so high I was ill. I have recently been diagnosed as hypopituitary -
for me, it is the anterior portion of my pituitary -- the FSH, LH and no
TSH (my pituitary no longer secretes what my thyroid needs). This is called
central hypothyroisism and treated just as primary hypothyroidism is, with
Synthroid or a similar med. Recently both my daughters were both diagnosed
as hypopit too -- central hypothyroidism. I had the NIH blood test in 2000
and it was negative; however, at my last appt a week ago, my family doctor
and I discussed repeating the pheo tests as I have had constant headaches,
severe hypertension, sweating and palpitations since July 4. At first, he
thought it was hyperthyroidism and we reduced my thyroid; now my thyroid
level is low so we know it is not hyperthyroidism (central hypothyroidism
-- you just look at the Free T4 -- the TSH means nothing)- your Free T4 is
supposed to be in the middle. Nothing is stopping the hypertension -- Is
there any thing new out there happening to diagnose endo tumors more easily?
Have any of you had multiple adverse reactions and/or allergic reactions
to blood pressure meds? Thanks for any help you can give. MaggieFuss@aol.com
How I found your page: From a search engine
Comments about the web site: Since my previous post I have once again
learned that my surgery will be postponed. Although my CT scans were done
in July, and I've had surgery scheduled four times, the primary surgeon just
looked at my scans for the first time today when I was in his office for
my (second attempted) pre-op visit. I got to look at the scans for the first
time today also. The pheo is located in a tricky spot against my spine in
my pelvis, so the surgeon I have been working with is attempting to refer
me to someone more equipped to deal with the surgery. Can anyone tell me,
from experience, which hospitals and surgeons are the best? Thanks!
How I found your page: Member
Comments about the web site: Gina - How awful to continue hving your
surgery postponed. We too have learned that no matter how much ahead you
send scans and medical history, the docs tend not to review them until they
have you waiting..and waiting...and waiting...in their office. I don't recall
if you've mentioned where you are located. However, on the blackboard message
site is a topic "Pheo Doctors, Links, Tests + Definitions". (It's generally
on page 1 of the board) You'll find a link under this topic for doctors and
facilities that have been recommended by pheo patients. If you have trouble
finding this, or cannot find a doc close to you, post your State on this
message board and perhaps someone can provide a recommendation. Good luck,
Judy
How I found your page: From a search engine
Comments about the web site: Just a little bit of history: In 1993
I was diagnosed with Medullary Carcinoma and underwent a complete Thyroidectomy.
In Dec. 2000 I had a Pheo on my right Adrenal and had it removed. I have
since been tested and confirmed that I have MEN2A. Both my mother and grandmother
are suvivors of Medullary Carcinoma. After Thyroid surgery in 1993 my Calcitonin
levels returned to normal and remained normal until February of this year.
They were normal when I had the Pheo. I had an Octreotide scan in March,
bloodwork, (2) 24 hour urine test and a month ago a MIBG. I had another
Octreotide scan last week which revealed nothing. My endo. will let me know
by the end of this week if a Discovery LS scan (a new type of PET scan) will
be helpful in diagnosis or if it is time that I move on to NIH possibly.
I am very frustrated and would really like a resolution to this problem.
I have a great Endocrinologist and feel she is doing everything she can to
resolve the problem. I would really like to know if those of you with MEN2A
have had experience like this and how it was resolved? Was the use of PET
scanning helpful in diagnosis? Additionally, are there any other illnesses
other than Medullary Carcinoma and Pheochromocytoma that would cause elevated
Calcitonin levels? Any help any of you can give is appreciated.
How I found your page: From a search engine
Comments about the web site: Gina, I have been receiving names of
people for their doctors and surgeons for the Pheo board. I read where you
asked who is the best? That is a difficult question to answer. Every surgery
like every patient is different. If you are asking who is the best know and
has done the most, and some of the more difficult surgeries the answer would
be Dr. Robert Udelsman. He is head of surgery at Yale Medical school. He
is the guy when it comes to pheos on the adrenals. And I have been told that
the NIH will refer more difficult patients to him. I have heard and read
some pretty impressive stuff about Dr. F. Charles Brunicardi Chief of Surgery
at Methodist Hospital and Baylor College of Medicine in Houston Texas. He
is know for doing very difficult and complicated surgeries of all sorts,
and is highly recommended by two of our members. You can go to the Doctor
list that Judy mention and see links to these doctors , their professional
pages and recommendation and emails for members who have used the different
doctors. Anyone who has their email listed would be glad to have you write
and ask about the doctor they have recommended. Remember, You will need to
find a doctor who not only is experienced with Pheo but also who can do the
surgery that is so close to your spine. Just because a doctor is not listed
on our list does not mean he isn't any good, just that none of our members
have seen them. Also just because someone does like a doctor does not mean
that you will also. Doctors are people and like everyone else in the world
different people relate differently to each other. But the list is a place
to start from. Please let us know who you end up with and how your experience
goes… that is how this all started way back when..sharing information
with each other. Good Thoughts go out to you.. Lyn
How I found your page: From a search engine
Comments about the web site: Thanks for the replies from Judy and
Lyn. This is such a helpful and supportive site. :) It looks like I will
be getting referred to Dr. John Van Heerden at the Mayo Clinic in MN. (I'm
keeping my fingers crossed that this will be the ONE!) I do have another
question...I am currently at 50 mg of dibenzyline/day and will increase this
by increments as I get closer to surgery. I have read all the literature
on this drug, but would like to know what side effects anyone else had on
this drug? My doc doesn't seem worried, but I have been feeling pretty run
down. Thanks again for all the support!
How I found your page: Member
Comments about the web site: Gina - Dibenzyline is probably a large
contributor to your being tired...it does wipe you out; but the good news
is that it's only until surgery. The med also helps you to retain fluids
causing the sniffles and possibly swellen. As the dose increases you need
to stand slowly from a sitting or lying down position as dizziness may occur.
Not seriously so, but just enough that they advise you to go slow and brace
yourself. Just prior to my younger son's surgery the doctors required he
use a wheelchair when he left his room due to this. My older son was on 120mg/day
for well over a year and other than being tired he was fine. Judy
How I found your page: From a search engine
Comments about the web site: This is a wonderful site! My husband
has recently been diagnosed with pheo --24-hour blood sample, followed by
successful lowering of bp by clonidine-suppressing drug (I believe he said
it was) and shown by an MRI. He has two tumors, one on each adrenal gland
& has been told he will need open surgery to remove -& probably will
have to have both adrenal glands removed as well, which means he'll be on
medication afterward to regulate hormone levels. The surgeon said that should
not be a problem. It has been about three weeks since we learned this. His
blood pressure has been at a good rate now for about that long on the new
medication but heart rate is still a little higher than they want it prior
to surgery. He's been checking it daily & is to call back on Tuesday
for further advice. We're hoping the surgery can be soon. I'm wondering if
the fact that there are two means it has metastasized? Before the MRI the
doctor had said it was a "benign tumor" -- can that be true of more than
one? We're hopeful that after he recovers from surgery he will feel like
a new man -- no more unpredictable sweats, anxiety attacks, etc. It sounds
as though many pheo patients have had recurrences. How likely is that? What
can he expect in terms of hospital experience for the surgery -- i.e. is
it likely to spend time prior to surgery in the hospital? Post surgery, how
long would he expect to have to stay? Are there other concerns we should
be aware of to ask the doctors about? Thanks so much for any advice and for
all the information you are providing.
How I found your page: Member
Comments about the web site: Sue - Two adrenal pheos does not necessarily
mean metastatic, and my impression is that it's not too unusual to have one
on each. Pathology will make a determination after the surgery but for whatever
reason it is difficult to determine if a pheo is actually benign, and I view
it more as an educated guess. Malignancy statistic is 10%, and recurrance
rate is also considered to be 10%. I think the important question for the
doctor is experience ... his and the anesthesiologist. When my son had pheo
surgery he went in the day before a scheduled angiogram, but I haven't seen
others post about having this procedure done. His surgery was to be 2 days
after that. I think they generally have you go in a few days ahead so that
they can really up the dibenzyline and monitor bp/heart rate. My son was
home a week after his surgery (he was 12 and in very good health otherwise.)
The pain management team becomes very dear to you after the surgery, and
I think it's the typical surgical recuperation...slow, gingerly walks around
the corridor, slowly getting in/out of chairs, etc. With my son being so
young, I prepared him ahead of time for waking up with tubes, wires, machines,
beeps, and the post surgical blues. If you haven't already found it, on the
"blackboard messages" of this pheo site is a topic entitled Pheo Doctors,
Links, Tests, Definitions". It has a tremendous amount of info that you can
access. Keep us informed! Judy
How I found your page: Member
Comments about the web site: Sue - Two adrenal pheos does not necessarily
mean metastatic, and my impression is that it's not too unusual to have one
on each. Pathology will make a determination after the surgery but for whatever
reason it is difficult to determine if a pheo is actually benign, and I view
it more as an educated guess. Malignancy statistic is 10%, and recurrance
rate is also considered to be 10%. I think the important question for the
doctor is experience ... his and the anesthesiologist. When my son had pheo
surgery he went in the day before a scheduled angiogram, but I haven't seen
others post about having this procedure done. His surgery was to be 2 days
after that. I think they generally have you go in a few days ahead so that
they can really up the dibenzyline and monitor bp/heart rate. My son was
home a week after his surgery (he was 12 and in very good health otherwise.)
The pain management team becomes very dear to you after the surgery, and
I think it's the typical surgical recuperation...slow, gingerly walks around
the corridor, slowly getting in/out of chairs, etc. With my son being so
young, I prepared him ahead of time for waking up with tubes, wires, machines,
beeps, and the post surgical blues. If you haven't already found it, on the
"blackboard messages" of this pheo site is a topic entitled Pheo Doctors,
Links, Tests, Definitions". It has a tremendous amount of info that you can
access. Keep us informed! Judy
How I found your page: From a search engine
Comments about the web site: So glad to find this site! I have been
thru the wringer with this, and don't have anyone to talk to. A short history
- Last winter I went started having high BP, anxiety and palpatations. My
doc started BP meds, sent me for a stress test and EKG and said that my heart
was fine, and even if my pulse was 110 while resting, that was o.k. About
3 months after that I developed pain in my right side, about at my waist,
radiating down into my hip. They said I had injured my sacroiliac. The pain
came and went, eventually wrapping around to the front. I saw a new gyn who
ordered a CAT scan. He thought I had a cyst on my ovary. I did have a 3 cm
cyst on my ovary, and the report said I had a 1cm growth on my rt adrenal
that "looked" benign. More pain followed. The gyn removed my ovary in July,
and still more pain. I switched gyns and the new one sent me for another
CAT scan. This one showed the mass was now 2cm. She told me it wasn't a gyn
problem and referred me back to my primary doc. They now say that I need
an MRI and I am now having pain in my upper back, and still in the groin.
Having night sweats, palpitations, feeling like my heart is jumping out of
my chest, which I feel coming on, before it actually happens. I walk with
a limp from the hip pain. I am furious that the primary got copies of both
CAT scans and didn't see the relationship to the high BP and anxiety attacks.
All of a sudden they will write me a prescription for pain pills, where before
they wouldn't. This has been going on for almost a year, and I am so ticked
that they have missed this, and now, what will the prognosis be? I am scared
to death that I have cancer, and think that the pain in my groin is from
my lymph nodes being involved. The CAT scan is on Wednesday, and I will see
the doc again on Monday. Can you advise me of anything to tell them to test
for, and let me know what to expect from this? I am 42 years old and have
6 kids, the youngest is 8. I am so scared that the prognosis will be bad,
and that I should have been more assertive with the doc. Any advice will
be appreciated. Thanks - Lori
How I found your page: Member
Comments about the web site: Lori - I understand your concern and
worry...as moms that's our job and unfortunately some of us have the worry
part down too well. Have the docs mentioned pheo to you? You'll notice on
the home page of this site a "blackboard". If you go to that you'll find
a series of topics and among those is one "pheo docs, links, tests, definitions".
There are all kinds of links and info here. We've been told that a CT for
pheos should be done w/o the injection...drink is okay. Be sure to mention
possible pheo when you have this done. Keep us informed. Good luck, Judy
How I found your page: Other
Comments about the web site: I've written here before but visit
infrequently. Reading about some of the new diagnoses, I thought I would
briefly retell my story. I discovered my pheo, growing in my abdomen, on
August 20th, 1993 -- 9 years ago. It was 12 cm. around then, and after a
botched first surgery which turned into 2 more surgeries immediately following
to fix the mistakes made in the first operation, in which I nearly died due
to iatrogenic error (They had no idea I had a pheo, but thought they were
dealing with a liver tumour, since my pheo is completely attached to my liver
and my BP spikes during the operation went through the roof), and was deemed
inoperable. I have 6 children. Their then ages were 3 (still breastfeeding),
7, 12, 15, 17, and 20. It was the most devastating experience of my life
until then to be told I was going to die (given that my surgoen still thought
I had a hepatoma). Fast forward to now. The tumour has doubled in size, measuring
about 25 cm. around, I have had some very serious episodes and one heart
attack 3½ years ago, and periods of time when the episodes have been
few and far-between. I know what it's like to feel that your heart is jumping
out of your chest with each beat. M My children are now 12, 16, 21, 14, 26,
and 29. The 24-year old was married 3 months ago. My life revolves around
my 2 youngest children. I am able to function as their mother quite well,
although I never feel well. I owe my continuing life to Tahitian noni juice,
by the way, which I have been taking since January 1998. It instantly stopped
my heart from jumping out of my chest and quelled my severe anxiety of that
time. Now it helps diminish the pain of the tumour and I am convinced it
keeps me going, because nothing else has. My tumour sticks out of my abdomen
in such a way that I look like I'm walking around inside a barrel (at least
I look that way to myself). Otherwise I'm thin. I cannot exercise because
I will have an episode if I do. I have not been able to make love for about
6 years, I've forgotten exactly how long. My husband of 30 years is wonderful,
and our children, bless their hearts, they've had to deal with so much throughout
all this, are the greatest. I have had such emotional ups and downs over
the years that I never imagined I'd have in life. The thought of leaving
6 children without their mother was so heartbreaking, I cried more tears
in my early years with this than I thought it was possible to cry. And yet
I've survived for nearly a decade. When the tumour grew bigger the first
noticeable time, when I was turning 50, 5 years ago, and 4 years after I
first discovered it, I was again told, unasked, to prepare for my demise.
How many times must a relatively young mother hear that she is going to have
to leave her children through death? There are few things more horrible within
a normal suburban existence. I am still scared. I don't want to live like
this -- living is definitely difficult and not fun anymore. Yet, I know how
to find cheap thrills to bring spurts of happiness into each day, and, of
course, there are the children. I think I have forgotten after this much
time how it feels to be well. I was a dancer, so not only was I a healthy
person, I was fit and in tune with my body. To have my body betray me with
this awful monster of a growth -- like carrying a boulder inside, always
-- is like a slap in the face to all I did to keep my physical self
well-nourished and in good shape. Oh well. People constantly tell me that
they are glad I am "over" this, that I am well now, not knowing that I am
more ill than ever. Since I look good and vibrant on the outside, no one
has any idea of what it's like on the inside, especially during the dreaded
paroxysms. The only saving grace with pheos seems to be that they're
slow-growing. My greatest fear now is who and how many of my children will
develop one, too. That is the unthinkable and yet I am forced to think of
it often. I remain cheerful most of the time, as I have learned to live this
way, but there are dark moments still. To have been dealt this card has been
devastating, and I kind of resent it when others tell me how brave I am.
I tell them I am no more brave than they would be, given the same circumstance.
After all, what other choice do we have?
How I found your page: Member
Comments about the web site: I have been advised to take phenoxybenzamine
for my active metastasized paraganglioma. Has anyone got any experiences
to relate? Regards to all Brad
How I found your page: Member
Comments about the web site: Brad--My 25 yr old son has metastatic
pheos and has been on phenoxy for 2 1/2 yrs. Half this time he was on 40mg
3x day; and then was weaned down to 20mg 2x day. They initially kept him
on the higher amounts until they ruled out surgery and he asked to reduce
it. We've noticed if he skips a dose, and is late with the next one, that
his bp tends to go up and he feels pretty bad, so I imagine he'll always
be on this. Judy
How I found your page: Link from another web page
Comments about the web site: My son is 15 and is currently in the
testing stage for a pheo. He has had symptoms for over a year now.... sporadic
high BP, sweating (even on cold days!) rapid heart rate, tightness in chest,
headaches and nausea, red faced, chest pains, etc. Only when one such episode
got frightening and we ended up in the local ER , did the doctors finally
start taking a second look at him. He has a really great doctor at Children's
Hospital in Seattle that is doing his best to get a correct diagnosis. As
you all can attest,..it is a frustrating "journey" to get one though. He
is going in tomorrow for a plasma free mets test tomorrow at Children's .
It just became available there so he will be one of the firsts to get it
there. My prayer has been simply " heal him or reveal it!! I know this is
a rare condition among children,..but I have yet to find very much in the
way of resources on pediatric cases of pheos. I also haven't come across
any other mom's who are going through this with their children. My son seemed
perfectly healthy up until a couple of years ago...no major health issues...just
a really great well adjusted kid. My husband and I are both healthy..though
my own father has MAJOR health and endocrine health issues...could any of
his problems have "mutated" genetically into the possible pheo issues with
my son??? I am just struggling to find a connection somewhere I guess.
Anyways,..I was just looking for any info out there and thought I would post
this in case my story resonates with anyone elses...I am really hopeful that
tomorrow's test will finally give us some answers. During an episode his
epinephrine counts (for regular plasma tests) have run as high as 157 picograms
and I guess the norm range is 4-83 picograms. And in between episodes his
blood and urine counts are basically normal. That is what has made them
suspiciopus of a pheo. Well,..we'll see how tomorrow goes....Wish us luck!
How I found your page: Link from another web page
Comments about the web site: My son is 15 and is currently in the
testing stage for a pheo. He has had symptoms for over a year now.... sporadic
high BP, sweating (even on cold days!) rapid heart rate, tightness in chest,
headaches and nausea, red faced, chest pains, etc. Only when one such episode
got frightening and we ended up in the local ER , did the doctors finally
start taking a second look at him. He has a really great doctor at Children's
Hospital in Seattle that is doing his best to get a correct diagnosis. As
you all can attest,..it is a frustrating "journey" to get one though. He
is going in tomorrow for a plasma free mets test tomorrow at Children's .
It just became available there so he will be one of the firsts to get it
there. My prayer has been simply " heal him or reveal it!! I know this is
a rare condition among children,..but I have yet to find very much in the
way of resources on pediatric cases of pheos. I also haven't come across
any other mom's who are going through this with their children. My son seemed
perfectly healthy up until a couple of years ago...no major health issues...just
a really great well adjusted kid. My husband and I are both healthy..though
my own father has MAJOR health and endocrine health issues...could any of
his problems have "mutated" genetically into the possible pheo issues with
my son??? I am just struggling to find a connection somewhere I guess.
Anyways,..I was just looking for any info out there and thought I would post
this in case my story resonates with anyone elses...I am really hopeful that
tomorrow's test will finally give us some answers. During an episode his
epinephrine counts (for regular plasma tests) have run as high as 157 picograms
and I guess the norm range is 4-83 picograms. And in between episodes his
blood and urine counts are basically normal. That is what has made them
suspiciopus of a pheo. Well,..we'll see how tomorrow goes....Wish us luck!
How I found your page: From a search engine
Comments about the web site: Thanks Judy, what kind of side effects
does your son experience? I took it for a week once and felt so 'wiped out'
I could barely function. Does this stabalise? Any other side effects? Jill,
my first pheos appeared at age 12, my nephew had one removed at age 14. The
pheo gene has been found here in Australia, blood tests of family can ascertain
where the link is and who else in the family may carry it. Email me if you
want more info. Good luck and Love to all, Brad.
How I found your page: From a search engine
Comments about the web site: Thanks Judy, what kind of side effects
does your son experience? I took it for a week once and felt so 'wiped out'
I could barely function. Does this stabalise? Any other side effects? Jill,
my first pheos appeared at age 12, my nephew had one removed at age 14. The
pheo gene has been found here in Australia, blood tests of family can ascertain
where the link is and who else in the family may carry it. Email me if you
want more info. Good luck and Love to all, Brad.
How I found your page: From a search engine
Comments about the web site: Hello to all. I am a Pheo patient myself.
I can't believe I found this site. How do I join? I have a ton of information
to share. I have had the Pheos twice. My first set of symptoms began when
I was 7 yrs. old. The tumor was finally detected and removed when I was 11.
My second set of symptoms began when I was 14 yrs. old, and was detected
and removed when I was 18. My symptoms did not go away after the second surgery.
In fact, I am currently on medication for panic attacks, anxiety attacks,
obsessive compulsive behavior, and depression. I still suffer from my headaches,
and occasionally at times still continue to get nauseous from the head aches.
The Pheos are a strong "family" trait. We also suffer from other types of
tumors related to the pheos. One of which is the Vahun Hippel tumors. My
mother just passes away at the age of 51 from a rare form of Breast Cancer
called Inflammatory Breast Cancer. This is also another "family" Trait. I
can't help but wonder if this is all inner related. Thanks. Marni
How I found your page: Member
Comments about the web site: Brad - Jeff does experience fatigue,
but to be honest I'm not sure how to tell if its only from the meds or because
of the disease. The fatigue certainly is not as bad since his dosage was
reduced. And yes, the effects of the med are much worse at first and the
body does eventually adjust to it. Judy
How I found your page: Member
Comments about the web site: Jill - I can definitely sympathize with
you. My 2 sons have had pheos ... first to be diagnosed was my younger son
who after 3 years of having attacks when playing sports was found to have
a single pheo at age 12. My older son was diagnosed with metastatic pheo
2 years ago at age 23. It is EXTREMELY hard to have your children go through
this. My aunt and cousin both died from metastatic pheos back in the 60s,
so our case is definitely genetic. If your son is found to have a pheo they'll
probably want to test him for MENS (multiple endocrine neoplasm). If you
go to the Blackboard message board you'll find a topic "Kids with pheos".
I think you'll find that you're not alone and we're all here to support and
share. Please feel free to email me directly. Best of luck, Judy
How I found your page: Member
Comments about the web site: Marni - Welcome to Pheoville! To take
up residency here (or to join) you simply only need to be here...so you're
in! Since you've been through pheos several times you may want to check out
this message board from time to time, as well as the Blackboard site, and
perhaps lend support and answers when you can. Sorry you got stuck in Pheoville,
but welcome. Judy
How I found your page: From a search engine
Comments about the web site: Thank you all who responded to my posting.
We just got back home from from Children's Hospital in Seattle. We live about
an hour North. I guess they still have to send the test back to the Mayo
clinic. Hopefully we will know the results by the middle of next week. I
am a little concerned about the results because the just drew his blood as
normal and didn't follow any of the protocol that I had read about for doing
the test. Does it really make a huge difference?? All I know is that I just
want some definite answers. The frustration of not knowing is making me crazy.
I know in my gut that "something" just isn't right. His symptoms seem to
fit the Pheo profile to a "T"...but,...do any of you out there know of anything
else that is similar that has these same symptoms?? Though he has a great
doctor at Children's...he said that he has only seen one other case of Pheo
there in his career. And in that case they came across the tumor before the
symptoms. I just wish there was a way to get more conclusive answers in a
more timely fashion with this disease...I have never heard of anything so
elusive before. Thanks for giving me a forum to vent in...it means so much
right now.
How I found your page: Member
Comments about the web site: Jill - My boys never had the plasma test,
but from what I've read it is important to follow the procedure for it. Has
your son had a 24-hr urine test or scans? You can find a lot of info about
pheos on the Blackboard Messages. On Pg. 1 is a topic "Doctors, Links, Tests
& Definititions", and if you go in here you'll find links...including
"diifferential diagnosis". I do understand the need to have it found and
your son healed. I was quite surprised at our excitement when my younger
son's benign pheo was found and we were told it could be "plucked out" and
he'd be fine. After years of being sick this just sounded so wonderful. I
guess it's all relative. Please stay in touch, Judy
How I found your page: From a search engine
Comments about the web site: Some time ago I posted and really didn't
get a response and thought that maybe someone out there now would have some
comments that would help me. I have MEN2A. I had Medullary Carcinoma in 1993
and a Pheo on my right Adrenal a year and a half ago. After removal of the
Medullary Carcinoma my Calcitonin levels returned to normal and have remained
normal until February of this year. I have been through a battery of test
since my levels elevated looking for either Med. Carcinoma or another Pheo.
I have had 2-Octriotide Scans, 1-MIBG Scans, 1-Pet Fusion, Ultrasound, blood
work, several 24 Hour Urine and test to stimulate Calcitonin. So far nothing
has shown up and I am so frustrated. I have reached wit's end and don't know
what to do at this point. If anyone has any suggestions, please let me know.
I am desperate for answers and want this to come to an end. Any help would
be appreciated.
How I found your page: Member
Comments about the web site: Leitha, I have written to you privately
in hope that I might be able to help in some way. Sincerely, Mary
How I found your page: From a search engine
Comments about the web site: I am looking for other people diagnosed
with multiple pheos who are undergoing chemo therapy. I am presently being
treated with a cocktail of cycloblastin, endoxan, oncovin and DTIC. I would
be most interested to hear from others who have had this therapy. I am midway
through the treatment cycle and have had a massive reduction in symptoms.
MIGB scan is schedule this week to evaluate tumour advance/regression. Please
mail me if you are having similar treatment. regards Duncan
How I found your page: From a search engine
Comments about the web site: I have all the symptoms of pheo for last
two years. I was basically bed-ridden for over 1 1/2 years. I was wondering
if anyone has been diagnosed with pheo except have the low blood pressure
instead? I was tested for pheo but everything came back negative. Please
reply.
How I found your page: Member
Comments about the web site: Duncan - My son has metastatic pheos
and had chemo 1-1/2 - 2 yrs ago. He had CVD (cytoxin, vincristine, DTIC).
His counts on the 24-hr urine did drop somewhat after these 6 treatments,
but the size of the primary tumor (CT Scan) did not change at all. He did
not feel that it did a whole lot for him. Please feel free to email me directly
if you wish to discuss this more. Good luck with your treatments. Judy
How I found your page: Member
Comments about the web site: Rose - There have been posts from those
having low bp rather than being high as is often associated w/pheos. If you
go into the "blackboard" section of this pheo site you'll find a topic "Welcome
to Pheo Support". Click on here, and on Pg 2 you'll find a topic for low
BP. You can post comments/questions there and the topic will move up to Page
1 where others will see it and hopefully provide more info for you. Judy
How I found your page: From a search engine
Comments about the web site: If a person tests positive for
hyperthyroidism, pheo and cushings...can one assume it is MEN? same person
had cavernous hemangioma with thrombosis removed. other symptoms
include:osteoporosis, additional bone tumors or cysts, a goiter, 1 cm lymph
nodes in neck that have increased in size over the year. blood tests indicate
high epinephrine plasma.is it acromegaly? She has been told there is an adrenal
tumor, but on the gadolinium MRI, the other adrenal didn't uptake??!?She
has tested positive for cushings on CRH/ACTH stim test, positive on MIBG.
She had suffered from most of her existing symptoms before the thyroid or
adrenal tumors were found...such as high calcium levels for almost two years..and
now more bone cysts are found. HELP...her conditions are worsening and she
doesn't know where to get help. I am worried about her. Any insight or advice
out there?
How I found your page: From a search engine
Comments about the web site: If a person tests positive for
hyperthyroidism, pheo and cushings...can one assume it is MEN? same person
had cavernous hemangioma with thrombosis removed. other symptoms
include:osteoporosis, additional bone tumors or cysts, a goiter, 1 cm lymph
nodes in neck that have increased in size over the year. blood tests indicate
high epinephrine plasma.is it acromegaly? She has been told there is an adrenal
tumor, but on the gadolinium MRI, the other adrenal didn't uptake??!?She
has tested positive for cushings on CRH/ACTH stim test, positive on MIBG.
She had suffered from most of her existing symptoms before the thyroid or
adrenal tumors were found...such as high calcium levels for almost two years..and
now more bone cysts are found. HELP...her conditions are worsening and she
doesn't know where to get help. I am worried about her. Any insight or advice
out there?
How I found your page: Member
Comments about the web site: Lynn - My family does not have MENS (though
have been tested for it), and I'm certainly not a medical person, and while
I think it's dangerous to assume anything, I certainly wouldn't rule out
MENS. The genetic test for MENS is very simple ... blood is drawn and sent
out to a lab. She should probably mention this concern to her doctor. If
you look on the "blackboard" section of this pheo support site you'll find
a topics for tests, definitions, etc., etc., and MENS. Perhaps this may help
with where you should go from here. Good luck! Judy
How I found your page: From a search engine
Comments about the web site: I was wondering how this problem can
affect becoming pregnant. I have been having all these symptoms from the
pheochromocytoma for the past 8 months and it has been getting worse and
is affecting my life. i am getting treated at this time and hopefully will
know the outcome within the week. any info the someone can give me would
be great. Thank You Susan Robeson
How I found your page: From a search engine
Comments about the web site: I was wondering how this problem can
affect becoming pregnant. I have been having all these symptoms from the
pheochromocytoma for the past 8 months and it has been getting worse and
is affecting my life. i am getting treated at this time and hopefully will
know the outcome within the week. any info the someone can give me would
be great. Thank You Susan Robeson
How I found your page: Link from another web page
Comments about the web site: Recovering from my surgery. Right adrenal
gland removed two weeks ago. Found 2 wonderful doctors and a great hospital.
They think I had symptons since I was 20, now I am 50 and finally have no
more sore bones, palpatations, sweats, bruises, I can sleep on my left
side!!!!!!!!Now that the gland is gone, what happens, my emotions are all
over the place.
How I found your page: From a search engine
Comments about the web site: Hi Judy Just thought I would update you
on Dave's progress. He was supposed to have operation to remove Pheo on the
17th September, but having been on beta and alpha blockers since the end
of June he was getting more and more breathless until they had to admit him
into hospital a week before the operation, drained 4 litres of fluid from
his left lung, postponed the operation and then told us the fluid was cancerous
and we were referred to the cancer hospital, and he has now started chemo
again, but he is worse than before because of the breathlessness which has
come back but this time they can't drain the fluid because it is a solid
mass in his right lung to he has cancer of the right and left lung. If only
we could have got the pheo out before all this started but because of the
breathlessness on the medication they thought it was the medication. He is
still on the medication for the pheo and they haven't made any mention of
maybe reducing the medication. I am pleased that I found this site which
is very helpful and informative. It is good to read all the letters from
people who are also suffering and I managed to get some relief for his dry
mouth from a comment one of the members said on the message board of some
tablets/spray from America. I couldn't find the product in the UK but they
posted me some from America. Best wishes to everyone love eileen
How I found your page: Member
Comments about the web site: Eileen, I'm so sorry to hear of Dave's
continuing problems. Seems like they should have seen the problem with both
lungs on earlier scans, but I guess who really knows when and how fast the
2nd lung got involved. You cannot beat yourselves up for not determining
the cancer sooner...been there...done that. We've met with a genetic cancer
doc who has participated in studies that showed malignancy in patients with
one small pheo and that we can't assume that catching it earlier would have
made a difference on prognosis. My son's doctors kept him in high levels
of meds for about 1-1/2 yrs and he finally requested that if they weren't
going to do surgery then to reduce it. So they did wean him down a bit; he
currently takes Phenoxy 20mg 2x/day, and Propanolol 10mg 2x/day. Please stay
in touch and feel free to email me directly if you want to just "talk". Take
care, Judy
How I found your page: From a search engine
Comments about the web site:
How I found your page: From a search engine
Comments about the web site: First let me say thank you for all the
effort you have put into this Website. I am having a problem with dx.Was
told my blood catecholimes were abnormal but 24hr urine was neg so therefor
I do not have Pheo. I have all the usual symptoms and I wonder if I should
accept that dx. or request furthur testing.
How I found your page: Member
Comments about the web site: Ginny - The 24-hr urine test is not
considered reliable, and it's not unusual for people to repeat it. If the
symptoms continue to persist, you should consider repeating the test. Perhaps
you can talk with your doc about repeating it at certain intervals. Have
you had an MRI? MRIs are pretty good at locating abdominal pheos. If you
haven't already found it, the blackboard section of this pheo site has a
link for medical articles. You'll find all sorts of useful info there about
tests, and about other medical conditions that can cause similar symptoms.
This is a great place for support, so stay in touch! Judy
How I found your page: From a search engine
Comments about the web site: Hi Would like info on type and location
of pain associated with adrenal pheo. Also if bp spikes of 180/147 is
significantly high? Thanks in advance.
How I found your page: Member
Comments about the web site: Diane - Location of pain varies by patient,
probably dependent on location of tumor and if it's pressing against a nerve.
Abdominal, chest, and back pain seems the most common, but in the case of
bone lesions you can have achy legs, hips, shoulders, headaches, etc. If
you are experience high BP you'd also be apt to have headaches due to that.
180/147 is definitely high BP. Anything that has #s at or above 140/90 (either
# being higher) is considered hypertension. While everyone's BP does vary,
and some people have a normal high or normal low, the 180/147 is definitely
high....especially the 2nd number. Granted he was age 12, but when my son's
went to about 187/143 we were told to get right to the hospital. Judy
How I found your page: From a search engine
Comments about the web site: Judy, thanks for your fast response.
Ive been reading every entry on the blackboard(I guess thats what you call
it) for 2 months now but didnt know how to get to this site until i read
the message by the Webmaster this morning. I have had 24 hour urine test
done but endocrinologist says epi levels only 1 1/2X normal levels are not
high enough. But through reading on this site I know 24 hour test is not
accurate unless during an episode, I was in my weak phase when I was tested
2 mo. ago. Since then my bp numbers top and bottom have increased about 10
points per months. I sleep about 1 1/2 -2 1/2 hours for up to a week then
finally am able to get some sleep for about four days and then the cycle
repeats. The bp spikes happen mostly when I have the pain in the adrenal
area and when talking about anything slightly emotional. HR is many times
120 - 130 range even when calm. What Scared me into finally writing to this
wonderful website is pain I am experiencing at bottom of ribcage on right
side.Feels exactly like gall bladder pain (very intense) but I had it removed
in 1993. This pain started Sat., lessened some, then woke me up Sun early
am and lasted about 12 hours lessened again but still I am aware of a discomfort
there. I dont expect a diagnosis from anyone here but it sure does help sharing
this with others that are experiencing the same frustartion in finding diagnosis.
Have determined to make appoint. with a doc recommended on this website to
have the plasma met test done. Ive always thought support groups were a great
idea but I now have a personal appreciation for them beyond words. I have
all symtoms now BPspikes,adrenal rushes,extreme internal heat, severe headaches,
insomnia, epigastric pain, occasional flank pain (I thought was kidney infection
but went away with no meds)increased heart rate, sometimes bp diastolic down
to 50,tremors,mental confusion probably due to lack of sleep, episodic
depression, nausea and severe constipation. Body temp stays about 1 - 2 degrees
lower than expected at different times of the day. Prozac made it worse so
now i take serax when I feel my bp getting higher due to adrenaline release.
Most people think you cant feel high bp but i have researched and if is high
enough you know it. Thanks again to all of you out there.I welcome anyone
and everyone that has comments or advice. IM NOT WAITING ON UNINTERESTED
DOCTORS TO DX THIS. With each bp spike now I worry about stroke or heart
failure. I already have damage to Mitral Heart Valve I found out about 2
years ago. And also found out this week while getting eyes tested that the
bp spikes have already caused damage to the back of my eyes. Once again,
THANKS.
How I found your page: Member
Comments about the web site: Diane - I'm glad that you sound so determined
to follow this through. Keep an open mind about possible diagnosis, but looking
into pheos sounds justified. FYI, I've had pain (or sometimes just discomfort)
below my right ribcage for about 26 years. Initially when it started it was
jabbing pain and there was an actual caving in or protrusion in this area.
With relocating and whatever I'm now on my 3rd doc since that time and all
3 have said it's muscle spasms. I've never had either, but always thought
it seemed like a heart attack or gall bladder attack. Just a thought. Be
sure to stay in touch and let us know how you're doing. You can also post
to the blackboard, the webmaster's message was more to ask people to try
not to start a new topic if one already exists, but certainly you can start
a new one when needed. You don't need to register in order to post. Best
of luck, Judy
How I found your page: Member
Comments about the web site: When I was co founder of a pesticide
information group, one of the most common complaints we received nationwide
was pain under the ribs. It is a symptom of pesticide exposure, along with
headaches, fatigue, and many other things. I realize it may not have anything
to do with the diagnosis of pheo. Since our family was contaminated (1983)
with a termiticide called Chloradane (and also an organophosphate called
Dursban) I felt it worth mentioning. There are many websites that go into
pesticide exposure symptoms. Also since our son's pheos were directly linked
to these endocrine disruptors,if this info helps one person who is having
their home treated on a regular basis stop using pesticides, it is worth
repeating here. Under the rib aches were a main symptom we all had as a family
while we were unknowingly being poisoned by the exterminator using these
chemicals. www.chem-tox.com is a good source of info concerning endocrine
disrupting chemicals.
How I found your page: Member
Comments about the web site: To all those out there in Pheoville,
make sure you take the time to enjoy beautiful things when they come along.
Today in N.H. the sun is shining on leaves of varied greens, reds, yellows,
and oranges, which are waving in a gentle breeze. It's a beautiful day. Judy
How I found your page: Member
Comments about the web site: Like I said, you need to enjoy a beautiful
day when you can. It's only been a few hours since I posted about our N.H.
weather, and now they are using the 4-letter word for tomorrow night.....
s..n..o..w. Shows you how important it is to enjoy the good things when they
come your way. Only in New England!
How I found your page: Member
Comments about the web site: Judy, I am enjoying your weather reports
and your sense of humor, LOL!!!
How I found your page: From a search engine
Comments about the web site: Judy, you sound like a very beautiful
person. thank you for your compassionate soul. i had the wrong e-mail address
last time. i use my husband's since i generally hate computers until i had
this problem and found this website. my update: went to hospital last night
with head feeling like it was exploding. i was crying it was so bad. bp was
175/146 on the way to hospital. of couse when i got there, it had dropped.
the pain was still there so bad i couldnt hardly talk. after two different
pain shots they sent me home with dx of anxiety. they didnt believe my bp
reading and didnt know about spiking. they didnt even hook me up to bp monitor
after it was taken while i registered. I really believe i had a tia. vision
was distorted like i was looking through a coke bottle and leftarm and hand
was slightly numb and weak. at least my search has begun so i am that much
closer to solution. have a WONDERFUL day and THANK YOU Mary for your continuous,
generous work on this website. diane
How I found your page: From a search engine
Comments about the web site: Hello all. Very nice site here. I am
a 19 year old male that had Pheochromocytoma back in 1991 when I was 8 years
old. I have a few questions for those who have had this rare disease and
have one or no adrenal glands now. I really want to hear from others on how
their life is with 1 or 0 adrenal glands. When I had this benign tumor removed
over a decade ago I had been one of the healthiest person's alive; I have
had those headaches since I had it removed, no vomiting, no sweating. I am
very lucky indeed and I have become very strong-willed and confident in my
health. My life has been very normal; I go to college, I have a beautiful
girlfriend, and I work to pay for the nice things I have. But now comes the
bad part. This past year or so, I have been suffering from a bit of depression..
from what? I simply do not know. One idea that has came to me is that having
only one adrenal gland may be the reason. But I don't really know if that's
true. I guess I am asking, Is having one adrenal gland just as good as having
two? If it is not, are people who have had pheo more vulnerable to depression
since adrenal glands help your body deal with stress? I also have fears of
having other diseases all the time, I believe it's called a hypochondriac.
Also, I am 6ft and weigh only 125 pounds. I have tried everything to gain
weight but just can't. I am very skinny; is this because I only have one
adrenal gland? Any insight would be greatly appreciated.
How I found your page: From a search engine
Comments about the web site: Correction: I meant to say I HAVEN'T
had those headaches ever since I got the tumor removed, and no vomiting,
no sweating, etc :)
How I found your page: From a search engine
Comments about the web site: I AM A MEDICAL STUDENT DOING RESEARCH
ON THIS CONDITION AND I WOULD JUST LIKE TO KNOW FROM SOMEONE WHO IS PERSONALLY
SUFFERRING FROM THE CONDITION OR FROM SOMEONE WHO IS A MEMMBER OF SUCH A
SUPPORT GROUP-----WHAT ARE THE PSYCHOLOGICAL AND SOCIO-ECONOMIC EFFECTS/IMPACT
OF THE CONDITION ON THE PERSON(OR PERSON'S LIFE)? IT IS VERY NICE AND THOUGHTFUL
TO HAVE SUCH A SUPPORT GROUP. KEEP ON INSPIRING AND ENCOURAGING THOSE WHO
MIGHT OTHERWISE THINK THAT THERE IS NO HOPE. PLEASE SEND REPLY TO THE ABOVE
E-MAIL ADDRESS AS SOON AS POSSIBLE. THANKS FOR YOUR HELP.
How I found your page: Member
Comments about the web site: John B. - I don't have any personal
experience with losing the adrenals, but you'll find discussions about it
on the "Blackboard" section of this support group. If you don't see the info
there that you want, post to one of the topics discussing it and maybe someone
can help you out. Good luck, Judy
How I found your page: Member
Comments about the web site: Just a note to let you know that we go
into Boston...again. Despite no real change in Tom's last MIBG scan, and
good results on 24-hr urine test, the surgeon still wants to do the CT scan
for additional follow-up. So we'll be doing that Tuesday, and then meeting
with surgeon afterwards. Just wanted to let you know because the continued
support from this group gives me the strength to face these tests with a
smile. Thanks. Judy
How I found your page: From a search engine
Comments about the web site: I had a pheo removed almost two years
ago. I have VHL so I know that they may get more pheos. I have been experiencing
very odd sensations when I lay down at night. It feels like a bolt of electricity
is going from my chest to my head. It last just a split second but it will
either wake me up or startle me if I am still awake. Does anyone else ever
have this symptom? Thanks, Emily
How I found your page: From a search engine
Comments about the web site: I need to know the effect of caffine
on a persons blood preasure.
How I found your page: Member
Comments about the web site: To kid doing science project .... try
to look at this link -- http://webmd.lycos.com/content/article/1817.50966
What I found is that the feeling is somewhat inconclusive. Studies have shown
that caffeine stiffens the aorta. When it can't expand properly the heart
needs to work harder, thus higher bp. Hope this helps!
How I found your page: From a search engine
Comments about the web site: Could anyone help me locate an expert
in the Northeast. I have been miserable and undiagnosed for 1 year and after
all the common symptoms I have learned about Phoes am convinced this is my
problem! please help!!!!
How I found your page: Member
Comments about the web site: Susan - From this "Home Page" you'll
see a link for the "Blackboard Messages". If you go into this, you'll find
a board w/topics. One of these is for doctors' information, and if you click
on this you will find a listing of doctors recommended by those who have
posted here. I'm sure there are other good doctors out there as well, but
these are just the ones that those posting have been to. Included in this
list are doctors in Maine, NH, Conn., MD, Mass ... I'm not sure where you're
located. Another suggestion is to review the info in the topic for medical
information and learn more about the symptoms, tests, and treatments. This
is a great place to ask questions and get support. Good luck, Judy
How I found your page: From a search engine
Comments about the web site: I am doing a project on pheochromocytoma
with a group of medical students and would really appreciate it if someone
who has/had this disorder , preferably a female within the 40-50 years age
group, would share her story with us--how has this disorder affected you
psychologically and socio-economically? How has it changed your life? This
is in an effort to sensitise the students the students as to the challenges
faced by patients, in order to make them caregivers and not just doctors
who give treatment. If you do not suffer from this disorder but know of such
a person, please feel free to reply. I can be reached at the above e-mail
address. Thank you for your patience.
How I found your page: From a search engine
Comments about the web site: Hello A friend of mine was taken ill
in December o2 2001. After months of tests and misdiagnosis, she went to
a Rheumotologist who suspects she is suffering from pheochromocytoma. Since
this is not his field he does not want to treat her. She has HMO and cannot
get a referral from her primary care doctor to get further testing and some
help. She is a very dear friend of mine. She lives in New Hampshire and is
the mother of four children. At this point she is bedridden and in constant
pain. The painkillers make her unable to function at times. Does anyone have
a suggestion on how she might get some help? I live in New Jersey and am
at my wits end trying to help her. She's only 46 years old and deserves better
than this. Please, if you have any suggestions, please e-mail me. Thanks
for your help
How I found your page: Member
Comments about the web site: Carol - I have two sons w/pheo and also
live in NH. I have emailed you directly with several thoughts, and encourage
you to review the "blackboard" section of this pheo site. I think it's wonderful
that your friend has you to help her with this. Good luck, Judy
How I found your page: Member
Comments about the web site: Carol - My email to you has bounced back.
Please feel free to email me directly at jlfurlong@adelphia.net. Judy
How I found your page: From a search engine
Comments about the web site: I'm am in need of a physician. I live
in Southern Oregon and do not know who I should see I need someone who has
some knowledge of this condition.
How I found your page: Member
Comments about the web site: Linda, I've written to you with some
information. Please check your email. Sincerely, Mary
How I found your page: From a search engine
Comments about the web site:
How I found your page: From a search engine
Comments about the web site: My husband has symptoms of Pheo,
biochemically positive. However, multiple scans (not MIBG) could not locate
a tumor. During 2 recent symptomatic episodes he also developed rhabdomyelosis
with transient renal failure. Does anyone know any reference that links
rhabdomyelosis with pheo?
How I found your page: From a search engine
Comments about the web site: We've spent a year trying to find someone
else with pheo/paraganglioma to connect with. What a relief..I filled out
the member stuff - are we now enrolled? Would love to just share with someone
our experience.
How I found your page: From a search engine
Comments about the web site: I'd like to share with you our experience
with pheo. My husband had a prostate biopsy and bladder check under anaesthesia
a couple years ago. The doctor found a bladder cancer. The nest day David
began to faint periodically, regaining consciousness as soon as he fell.
No one knew the reason, and it stopped in a couple of days. Many months later
David developed some soreness near his collarbone. He thought he had slept
funny. We were headed to Florida for golf, and ignored the stiffness. On
his first club swing David felt a severe pain, as though he broke his collarbone.
His blood sugar (he's diabetic) went up to about 500...xrays showed no break,
but there was a golfball size lump. Pain killers - when we got home we were
sent to a rheumetologist. David lost consciousness on the way into and out
of the MD office. Sent directly to our MD - lost consciousness on the way
in. David was put in the hospital, neurology unit, and the relationship with
being upright and plummeting BP was ascertained. Strokes and stuff were ruled
out, and we went home. Over the next few months he was put on meds for BP
- tilt table test...Then the urologist checkup showed a bulge in the bladder
wall. He was sent to another urologist who recommended an exploratory surgery.
As he would not listen to any history, I insisted on talking to the
anaesthesiologist - who had trouble with keeping David stable during surgery.
Initial diagnosis was a mucent (mucous producing) cyst, benign. Hospital
discussion group determined the pheochromocytomea. David began taking
Dibenzilene. All summer (2001) the oncologist and I searched for treatment,
following a defunct program from U. of Michigan all over the country, finally
back to U. of Michigan to find out who bought their MIBG product ...and finally
to Duke. David was accepted for treatment, set for 9/13....then 9/11 occured
and it was postponed til late October. David was having trouble walking,
excessive fatigue, could only go a few steps, and that with me holding on.
Duke determined paraganglioma (same as pheo but not originating in the adrenal
glands)... We just awaited the delivery of the isotope...FedEx lost it, so
we had to return to Cleveland and wait a month. Whe we returned in November,
we went through an unbelievable experience - FedEx again lost the MIBG isotope.
Now David was in considerable pain, slept most of the time, moved by wheelchair.
We decided to remain at Duke and await the MIBG delivery a week or so later.
David responded to the treatment, but two weeks afterward his blood levels
dropped dangerously low. For two weeks we went to the hospital at home daily
for transfusions. He has continued to improve, played golf and bowled this
summer, and is back to near normal. He is on no meds except his insulin.
His 24-hr urine numbers continue to decline from the 21,000 reading he began
with, but certainly do not approach normal. We have no prognosis, and Duke
was not able to put us in touch with a support group. We are grateful to
have found you. Pat Sugiuchi
How I found your page: From a search engine
Comments about the web site: I'd like to share with you our experience
with pheo. My husband had a prostate biopsy and bladder check under anaesthesia
a couple years ago. The doctor found a bladder cancer. The nest day David
began to faint periodically, regaining consciousness as soon as he fell.
No one knew the reason, and it stopped in a couple of days. Many months later
David developed some soreness near his collarbone. He thought he had slept
funny. We were headed to Florida for golf, and ignored the stiffness. On
his first club swing David felt a severe pain, as though he broke his collarbone.
His blood sugar (he's diabetic) went up to about 500...xrays showed no break,
but there was a golfball size lump. Pain killers - when we got home we were
sent to a rheumetologist. David lost consciousness on the way into and out
of the MD office. Sent directly to our MD - lost consciousness on the way
in. David was put in the hospital, neurology unit, and the relationship with
being upright and plummeting BP was ascertained. Strokes and stuff were ruled
out, and we went home. Over the next few months he was put on meds for BP
- tilt table test...Then the urologist checkup showed a bulge in the bladder
wall. He was sent to another urologist who recommended an exploratory surgery.
As he would not listen to any history, I insisted on talking to the
anaesthesiologist - who had trouble with keeping David stable during surgery.
Initial diagnosis was a mucent (mucous producing) cyst, benign. Hospital
discussion group determined the pheochromocytomea. David began taking
Dibenzilene. All summer (2001) the oncologist and I searched for treatment,
following a defunct program from U. of Michigan all over the country, finally
back to U. of Michigan to find out who bought their MIBG product ...and finally
to Duke. David was accepted for treatment, set for 9/13....then 9/11 occured
and it was postponed til late October. David was having trouble walking,
excessive fatigue, could only go a few steps, and that with me holding on.
Duke determined paraganglioma (same as pheo but not originating in the adrenal
glands)... We just awaited the delivery of the isotope...FedEx lost it, so
we had to return to Cleveland and wait a month. Whe we returned in November,
we went through an unbelievable experience - FedEx again lost the MIBG isotope.
Now David was in considerable pain, slept most of the time, moved by wheelchair.
We decided to remain at Duke and await the MIBG delivery a week or so later.
David responded to the treatment, but two weeks afterward his blood levels
dropped dangerously low. For two weeks we went to the hospital at home daily
for transfusions. He has continued to improve, played golf and bowled this
summer, and is back to near normal. He is on no meds except his insulin.
His 24-hr urine numbers continue to decline from the 21,000 reading he began
with, but certainly do not approach normal. We have no prognosis, and Duke
was not able to put us in touch with a support group. We are grateful to
have found you. Pat Sugiuchi
How I found your page: Member
Comments about the web site: David and Pat - Welcome to Pheoville.
Not on the top 10 of places to visit, but at least once you're here you're
in good company and have great support. My older son (now 26) has had 2 MIBG
treatments at Duke for metastatic pheo ... Mar'01 and Oct'01. He too got
pretty wiped out after about 3 weeks, and after the 2nd treatment did require
a couple of transfusions, and a number of weeks of Procrit. But he's been
playing soccer and tennis since these treatments and we felt they really
helped. In the last month he's been feeling more fatigued again, but he's
been working a regular schedule, coaching a high school soccer team, and
taking a grad course. He's anxiously awaiting the results of a urine test
to see where his levels now stand. As you look around this site, in addition
to the shared comments you'll find an area on the "blackboard" that has links
to numerous articles about pheos, treatment, etc. Thanks for sharing your
experience, and please keep us posted. Judy
How I found your page: Member
Comments about the web site: David & Pat -- I've got a question
for you. Over the last few years as I've tried to learn more about pheos,
I've seen several references connecting pheos and diabetes. Have any of the
doctors mentioned this? Our family deals with familial pheos, and my grandfather
died at a young age of complications from diabetes, and his mother died at
a young age of "some type of cancer". Not that it will help my sons, but
we've speculated whether this is our past history with pheos. Judy
How I found your page: Member
Comments about the web site: Dear Members, I regret that AOL has informed
us that our space at this board has reached its limits. This board will remain
for archives, but all new posting will have to be continued at the "blackboard"
message board from now on. The link is shown below. Kindest
regards, Mary
Chatroom BlackBoard for Pheochromocytoma Subjects