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Read Posts of Year 1999 || Read Posts of January 2000 - June 2000

Here posts from July and August 2000:

How I found your page: From a search engine
Comments about the web site: I have been taking dibenzyline to treat pheochromocytoma. Recently the price has skyrocketed. Does anyone know why and can anyone suggest a substitute. Thanks

How I found your page: From a search engine
Comments about the web site: Re: Price increase for Dibenzyline - We were also shocked when the price of this medication increased so dramatically. I talked to our pharmacist and then made several phone calls to drug companies. Turns out that there is only one company that manufactures the component needed to produce dibenzyline and they had decided to stop producing it. The pharmaceutical company that had carried dibenzyline was SmithKline Beecham, and they didn't want to bother with the drug so they sold the right to produce dibenzyline to WellSpring Pharmaceutical. When I called WellSpring, I was basically told that we should all be grateful that they 'saved' the day and coerced the company responsible for making the 'special' component to continue making it and that WellSpring would then manufacture Dibenzyline. And that there is nothing they can do about the price increase. There is a Patient Asst. Program that people might qualify for, the number I was given is 1-800-546-0420. There is another drug called Demser, which helps some pheo patients, however I have been told that it also has more side effects, such as possible severe depression. Some people also use calcium channel blockers instead of the alpha blockers.

How I found your page: From a search engine
Comments about the web site: I have been tested for pheo (MIBG)and this this was negative. I have tachycardia, BP spikes, cannot loose weight dispite dieting, elevated metanephrines. I also have Hashimoto (thyroid disease). For the past month I have a quivery feeling inside of me also. I am trying to find out what is wrong with me. I have found some interesting conditions which can also produce simar symptoms 1) Allergies (read The Pulse Test 2) An overgroth of candida albicans (this is hypothetical by most of the medical establishment, 3) an article on the internet said that if a person has abnormally elevated insulin/insulin resistant " the consumption of food in healthy persons causes a temporary disinhibition of neurons that stimulate the sympathetic nervous system: this stimulation can be seen in heart activity. In an insulin-resistant individual, hyperinsulinemia minics the conditions of digestion when the body is not actually consuming food, promoting sympathetic nervous stimulation all of the time. This becomes evident when urine is analyzed for the presence of norephinephrine, a chemical which is secreted during sympathietic nervous activitry. Urinary norepinephrinbe and insulin levels were both related to each other and to hypertension. Insulin suppressiion, on the other hand, has been shown to cause decreases in both norephriephrine levels and blood pressure. The other likely mechanism by which insulin caused hypertension is sodium reabsorption by the kidneys. ...These mechanisms (sodium reabsorption and nervous stimuilation) may both operati at the same time, linking insulin resistance diretly to hypertension. (I just had my insulin and glucose tested- glucose was normal, insulin was 94 (it should be less than 20).

How I found your page: Member
Comments about the web site: Hi to Linda, Jeanne, Scott and Fred. I have written individual private emails to each of you so that I could go into greater detail with my answers. Please check your emails. Sincerely, Mary

How I found your page: Member
Comments about the web site: Dear Robbie: Thanks for this information about SmithKline Dibenzyline which Fred needs. I found a page online, and it lists exactly the same number you gave SmithKline Patient Assistance: (800)546-0420. Here is the page link for future reference, as it has information about Dibenzyline and many other medications. http://www.institute-dc.org/drugbook.txt I am going to continue looking and asking about this matter. It is disgusting that any of us are told that we should consider ourselves lucky that they "care". I could say more about what the drug companies really care about, but I won't..., want to just get some answers at this point. Sincerely, Mary

How I found your page: Member
Comments about the web site: Hi Susan. I wanted to email you but I can't get it to send to that address listed in your post. We have several members who have dealt with Hashimotos and Candida Albicans. We also have had person who discovered they had Gluten Intolerance instead of Candida. Some of the symptoms are very similar. There is also Celiac disease which can be mistaken for some of the symptoms you describe. The main thing is that your doctor find what is the cause of these imbalances. I see you had the MIBG, but I am wondering if you had any other tests for pheo? Let us know how you are with updates? Thanks, Mary

How I found your page: A friend told me
Comments about the web site: Hello Mary. I'll ask you this question in person as well as post it. Maybe others would be interested in your response. I saw a post from a woman who stated that after the death of her son and grandchildren that she began experiencing symptoms of a pheo. Is there a link between pheo's and dramatic emotional stresses? About a year or year and a half after the sudden death of our son my husband started having severe anxiety attacks, heavy sweating, dangerously high BP'S, rapid heart rate, and bone pain. With the family history of this disease, I was sure that is what he had but he has never been diagnosed with this disease mainly because I don't believe the doctors in our area know how to test properly for it, and don't seem very interested in learning the proper testing needed.

How I found your page: Member
Comments about the web site: About Dibenzyline - I received this email from Deb at angldove@twcny.rr.com: (Dear Mary, Yes there is a generic for it called Phenoxybenzamine, and it is very inexpensive. I had to use it before my surgery. Hope this helps. We will be home on Saturday. Love, Deb) Please ask your physician this generic medication called Phenoxybenzamine. Apparently it is much less costly than Dibenzylene. Sincerely, Mary

How I found your page: Link from another web page
Comments about the web site: first of all my name is Lauri and Im writing for my sister Janet. Our father died 23 yrs ago from pheo. My sister has been sick for 2 yrs now with what started out as muscle aches and her bladder , she was constantly going to the bathroom and in horrible pain. they diagnosed her with IC a bladder condition and then fibromialgia (not sure of the spelling) she has been a very sick lady now for 2 yrs. she can hardly walk half the time and her sleep is crazy, she will go for days without sleep , then sleep for 24 hrs. she is on so much med now for pain. Well I started reading these sites for pheo and I got her to go see a endo doctor and her VMA testing came back with such high levels, not sure of all the names. and all her blood work came back crazy too. She and I have been very nervous people all our lives, anxiety is a big problem and we have both been on meds for rapid heart beats and palpations for yrs. blood pressures have been going up and down. sweating has been a major issue, but contributed to the change of life. My sister is 53 , I am 44 Any ways, as i said her VMA was high. The doctor just did a MIBG test on her and found nothing. Now they are sending her to the Univerisity of Michigan. This is where our father died. This is where we are now and trying to learn as much as we can about pheo and what to expect now. If the VMA testing shows such high levels of these hormones, is there for sure a tumor somewhere? If you or any one can help give some answers it would be so helpfull. please e mail me . My name is Lauri and my address is Jean42mi@aol.com looking foward to any and all help warm thanks Lauri

How I found your page: Member
Comments about the web site: Hi Lauri, you and I have already talked, but I sent you another private email regarding testing. Please keep us updated on how both you and your sister are doing. Sincerely, Mary

How I found your page: Member
Comments about the web site: Dear Members: I have some disappointing news about the pricing of Dibenzyline. I received the following note from Debra today - - Dear Mary, I just returned home from vacation. I stopped at the local pharmacy where I got my Dibenzyline three years ago. He told me that there is NOT a generic form available any longer. He said that a 30 day supply of Dibenzyline is over $300.00. This is absolutely absurd to me. I know that I did not pay very much for it three years ago. We need do something to lobby other drug companies to produce generic form of this drug. He told me that it was so expensive because it is not used often. In fact I was the only person who has ever taken it, and they just threw away the remaining supply from three years ago. This is probably the answer to the great expense. The pharmacist told me that it is probably much cheaper if purchased in Canada. I am going to do some research myself and will get back to you. You may post this on the website if you wish. Love, Debra - - Apparently, the manufacturer of the medication has a monopoly on the distribution and pricing.

How I found your page: From a search engine
Comments about the web site: Hello to all. Wow!! It is amazing to read all of the stories and situations that people are in.... in makes me so sad that we have to work so hard to be "heard" - all the while feeling sick!! I too have had a pheo removed. It was an extra-adrenal found on my aorta/spine..... that was 2 years ago.. I am currently suffering from symptoms- sweating, nausia, goosebumps all over, racing heart, etc. Urines continue to come back negative. I am very frustrated about what to do. Tomorrow I have an appointment with my primary care Doctor... I want to have a full body scan (bone) among other tests. I have a lot of pain in my spine and lower back and right hip. What can one see on a bone scan?? If anyone has any advice, insight, experience with this, please write... I will check my email tonight and tomorrow before my appointment. I will let you know the outcome.. Thanks. Peace and much love.

How I found your page: From a search engine
Comments about the web site: Mary, I'm curious about Anne's question regarding a possible link between a pheo and dramatic emotional stress. I read in my Merck Manual that 50% of people high blood pressure is persistent. In the rest, it and other symptoms come and go, sometimes triggered by various things, one of which is emotional trauma or the simple act of urination. Now, the symptoms I have are simply an exorbitant amount of adrenaline being released (sudden surges of fear or panic when there is no need to feel that way); and my remarkably regular 5:00 a.m. wake-up call, that being a need to urinate and a surge of adrenaline all at the same time, often accompanied by a major 10 minutes of heavy sweating. I do not have high blood pressure and all blood and urine tests are negative. And 1 or perhaps 1 1/2 mg. of ativan stops the adrenaline. If one has a "real" pheo, would ativan actually stop the pheo from producing symptoms of a panic attack? Or is one simply having a panic attack? And in my case, where a c-scan showed "a 1 cm soft tissue density arising from the left adrenal with the left adrenal bulky in appearance", can I actually have a pheo but without the "necessary" high blood pressure and positive urine tests? My gp thinks it is a pheo, his summer replacement thinks were both nuts. Am seeing an endo on the 26th, but would sure like to have more info before the appointment. Hope you're feeling better - my problems seem so puny compared to yours. Take care...

How I found your page: From a search engine
Comments about the web site: Hi, Lizzie here. Mary - just so you know.... I registered on this site under another email address about 3 months ago. My email has changed, and so - I will register again - - this one is the correct, long term one. As an update, I went to the Doctor - he was so great! So many times, it is not so much the doctor, as it is that I have difficulty in asking for what I need, and I don't trust my intuition. He knows that my intuition is good, otherwise, I would have never come in the first place (not feeling well, and they found the pheo...) Anyhow, I had tons of blood taken, an EKG (normal), a full physical..... so, I will have a bone scan on Monday. Question: Is there anything that can interfere with the uptake of the radioactive isotope that one takes a few hours prior to the scan? If anyone has any information on this - it would be great to hear. My thought is this - we all need to keep trusting our instincts, and have faith in ourselves. If we come across Doctors that don't listen, and/or don't respect our perspective - MOVE ON!! Don't allow anyone to take your spirit... Yes, it is a major frustration and drag when we are not "heard", and it is a drag that we have to be our own advocate, however, we must always be our own advocate in life. Support groups like this encourage strength and love.... just let all those other people go, know that they, for whatever reason, are struggling on their own path as well.......Wishing everyone Love, peace and light.....

How I found your page: From a search engine
Comments about the web site: My 39 year old sister has had excessively high blood pressure for 5 years. She has lived in 3 communities, and none of her physicians have been able to pinpoint the cause if this problem, nor have they been able to lower her bp to an acceptable level. She is on a lot medication, and they have never found a suitable combination for her. She has spent the last week in Ottawa being tested. They are saying it may have something to do with the adrenal gland, but have not yet provided her with any details. She is travelling back to her home today, in Northern Ontario. She has been asked for a blood sample to be taken there, and sent to Ottawa's Heart Institute, where she's been asked to return in 2 month. It is frightening to think it has taken 5 years and a number of Dr.s to 'get with it' and conduct a wider range of tests...and to think her life has been in the balance...anyway, I would appreciate any information re: adrenal gland-blood pressure. I have done some basic research on the Internet. Thank-You!!! Concerned Sister, Charlene :)

How I found your page: Member
Comments about the web site: Dear Lizzie, I wanted to let you know that there are no known interferences with the uptake of the radioactive isotope. We've been asked this question several times in the past, and I remember asking the medical experts for help in answering. They told us to "Be sure to follow any guidelines and restrictions that are given to you by the radiology department that is scheduling your appointment for the testing. Also, if you have any questions about restrictions, be sure to call the radiology department." When I had that test done, I recall being told not to eat or drink anything after midnight, the standard restriction. I want to thank you for your positive messages on the board. We all appreciate hearing from a thoughtful and courageous person. Sincerely, Mary

How I found your page: Member
Comments about the web site: To Anne and Leslie, regarding the question of stress triggering pheo, I have sent both of you email replies. Your questions were very interesting. For others who are interested in this subject, here is a link to the feedback received from a top pheochromocytoma researcher: Stress Triggering Pheo?

How I found your page: Member
Comments about the web site: Dear Charlene, I have written a personal email to you regarding your sister and what her immediate medical needs might be. Please check your email. Write back, ok? Thanks. Sincerely, Mary

How I found your page: From a search engine
Comments about the web site: I'm looking for the email address for Robin4111. Her web page doesn't seem to have a link. We very similiar diagnosis and history. Would love to hear from her.

How I found your page: From a search engine
Comments about the web site: I have a 19 year old son who is suspected of having Pheochromocytoma. Symptoms include elevated blood pressure, racing irregular heart, sweating, anxiety, etc. The problems seem to be related to eating. After eating or exercise, his pupils dialate & do not respond to light, his right eyelid droops, his blood pressure goes up very significantly, he gets very anxious, and he becomes very tired. He has had scans of the adrenal glands and nothing has shown positive. Has anyone heard of adrenal tissue growth related to the stomach area? We are currently awaiting the 24-hour urine test. He is scheduled for a radio isotope scan this week.

How I found your page: Other
Comments about the web site: Am a regular visitor to this site having had a pheo removed this April. Now know my previously mysterious blood test was for medullary thyroid carcinoma. This has turned out positive and am soon to undergo futher tests. Thought this was all over, but here I go again. My endo did not mention MEN or VHL and I was too scared to ask just before leaving for my holiday. Having returned to face this now, can anyone tell me the name of the tests for MEN etc. and are there any sensible questions you can suggest that I ask when I next see the endo. At least I know I am being looked after by a wonderful team of professionals at King's College Hospital here in the UK - that's half the battle!

How I found your page: Member
Comments about the web site: Hello Gary: I received your data entry, and I wanted to let you know I've written an email to the address you gave. In answer to the question about locations where pheos can be found, there have been numerous places in the body. I went into more detail about symptoms and other concerns in the email. Please keep us updated on what the test results indicate? Sincerely, Mary

How I found your page: Member
Comments about the web site: Hi Kathy (sidelites@sprynet.com) I've written to Robin to see if her most current email is in use. Will let you know what I find. In the meantime, always feel free to write to the rest of us and post all you like. Mary :-)

How I found your page: Member
Comments about the web site: Dear Jo - I have MEN2a, and I have also have dealt with medullary thyroid cancer, and had to have a total thyroidectomy. I will be writing to you with much more details about the illness, symptoms, and surviving all of it. Be sure to check your email. Sincerely, Mary

How I found your page: From a search engine
Comments about the web site: I think this web site is great. so much good information!! i am currently being worked up for a possible pheo. i have had two 24 hour urine tests which were positive. i saw an endo today for the first time. he is not "convinced" because my numbers were not "high enough". i am going to have another 24 hr. urine. he also is rechecking thyroid (for the 3rd time in 2 months), and a blood test for "chromogranan". ever hear of it?? i was convinced by the 2nd 24 hr. urine that pheo was it. any comments??? susie slow

How I found your page: From a search engine
Comments about the web site: My mum was diagnosed with cancer of the Kidney in Dec 1998,however, we have now discovered it was Pheochromocytoma, it has spread to the liver and lungs and also in the area where her Kidney was removed. Is there hope? No one seems to want to tell us anything. I need hope!!!!

How I found your page: Member
Comments about the web site: Dear Susie: Thanks for your thoughtful comments to our board. I notice that you have had two 24 hour urine tests that were positive. I gather that you then went to an endocrinologist, who feels the numbers aren't high enough, and wants you to have a third urine test done. Most of us in this group have been through all the entire range of tests, too. It is not unusual for doctors to order many tests while trying to determine if a person indeed has pheochromocytoma. You asked about "chromogranan" tests. The only one I've personally had done is a chromogranin test, which is for certain levels of "markers" in the blood that can be measured. I don't know if this is the same? Perhaps some of our other readers can help with any more detailed information? What type of thyroid tests are you having done, and do the doctors think it is related in any way to the possible pheochromocytoma? The reason I ask is that there are different types of "pheo". I have written an email to you, with some links that will help. Feel free to write back to me with any questions.

How I found your page: Member
Comments about the web site: Dear Julie: Over the years that I've been webmaster at this site, I've received many letters from persons, asking others here if there is hope with this illness. I personally think that where there is hope, there is survival. Everyone is individual, and it often seems a lonely battle, so I am sure your mother is thankful for your support and love. One of our toughest survivors with malignant pheochromocytoma was not given much hope years ago, and yet she still survives to this day. In fact, she is the one who pointed out to the rest of us that "pheo" also can be rearranged to spell the word "hope". I encourage you to write to me anytime you like, with any questions or concerns. I've been in the same situation as you, and I know it is difficult to deal with uncertainties, especially when doctors aren't telling you anything. Please remember that we are here. Sincerely, Mary

How I found your page: From a search engine
Comments about the web site: I've been diagnosed with MEN 2A. Right now I have bi-lateral Pheo's, 1 at 8cm, and one at 3cm. I have no signs of thyroid or pancreatic pheos or carcinomas. The Doc's say I will eventually get it because my mother had it. I'm only 24 years old and have recently become very interested in alternative medicine. I don't believe in cutting out a part of my body that I believe has the ability to heal itself. Since I've started my own therapy my "episodes" of heart palps, and shaking have gone from 4 times a day to 4 times a month. I've been reading through your letters and comments and i'm wondering, hasn't anyone looked for an alternative answer? I found a sight recommended by my D.O. ralphmoss.com. He's a reasearcher that has all of the latest news on every type of cancer, including Pheo. I plan on ordering it, but I really want to know, hasn't anyone tried anything other than what some guy (who pretends to have your best interest at heart)in a white coat tell you? Dont get me wrong, I know there are some really genuiine docs out there, I'd like to meet one! Thanks for your time!

How I found your page: From a search engine
Comments about the web site: I had one 24hr. urine, which was high. Everything has been on hols due to high amounts of meds taking for my high heart rate. Now I am having tremendous gastrointestinal problems - nausea almost constantly, no appetite, and severe grumbling of my stomach. Could this be anything to do with pheo? Thanks for your help.

How I found your page: From a search engine
Comments about the web site: Does anyone know of a good site/reference for doctors experienced in Pheochromocytoma? My mother has recently been diagnosed with this and is in the Connecticut/NY area. Any info would be appreciated. TIA, Jeff

How I found your page: Member
Comments about the web site: Dear Amy Sue: I have MEN 2A also, so perhaps I can help with what I've learned. I agree it is better not to cut out a part of your body that might have the ability to heal. Yes, many of us have privately sought out alternative answers. Part of living with the illness is finding what works for the individual. I understand your feelings about the "white coat", as I have at times lost confidence in certain doctors and/or medical facilities. That is not a good feeling to have. However, we can't actually recommend alternative products and services, nor can we even recommend physicians without their advance permission. We are currently working on some pages that will have information covering these topics. I do reassure you that the doctors and researchers who do volunteer their time at this site are genuine, and they do care. Please visit our members' site pages, and feel free to post. You are very welcome here. Sincerely, Mary

How I found your page: Member
Comments about the web site: Dear Linda Davis: With your pheochromocytoma test coming out high, and the fact that you are having tremendous gastrointestinal problems - "nausea almost constantly, no appetite, and severe grumbling of my stomach," it is a good idea to make sure your physician follows up on seeing that you get needed medication and treatment. Yes, those symptoms are typical of pheo, but they can also indicate other health problems. Please keep us updated on what your physician says. Thanks, Mary

How I found your page: Member
Comments about the web site: Dear Jeff, I have put in requests to several resources to find a physician experienced in dealing with pheochromocytoma for you, in the area you requested. I will be in touch with you by email as soon as I have news. Sincerely, Mary

How I found your page: From a search engine
Comments about the web site: Well! Finally got to see an endo this week in Vancouver. Asked a million questions, poked and prodded and thumped me and ordered yet more blood and urine tests. The samples will be taken here at our local hospital, but sent to St. Paul's in Vancouver. Finally going to check metanephrines and catecholamines which haven't been done before. And he wants an MRI of my left adrenal but that will take a couple of months the way our poor overworked health system is slogging along. I sort of got the impression he was leaning more towards anxiety and depression rather than a pheo (despite the results of the c-scan). But overall, he was concerned, warm and thoughtful and certainly not the type to pooh-pooh my symptoms as something trivial. Also had a great week in Halifax, Nova Scotia with all the glorious tall ships in port. Hope everone is doing o.k.....take care, Leslie

How I found your page: Other
Comments about the web site: Please give info on the blood tests for Plasma Metanephrines and Catecholamines. My urine studies have been negative but am symptomatic and would appreciate further assistance. Am currently on 4 BP meds and am of low -normal weight and exercise regularly. Thanks.

How I found your page: Member
Comments about the web site: Dear Members, I am in between tests right now, and I wanted to make a quick post to let you know I will be out most of this week. I am scheduled for surgery, and I will try to get back in touch with everyone when I can return. Thanks, Mary

How I found your page: Member
Comments about the web site: G'day to all, it has been a while since I have been here, but there was nothing new. Well finally after 18 months of waiting and numerous tests I am having the Adrenalectomy on Monday. They will remove the alien growth that has been causing so much discomfort. I am positive that after surgery I will be medication free. Will talk again after surgery. Take care Femme

How I found your page: From a search engine
Comments about the web site: G'day again, well it is Tuesday today the 8th August, was supposed to have adrenalectomy yesterday. Correct it did not happen as my blood was to thin and the risk would be to high to operate. Now I am sceduled for the 29th of August. Yes I am disappointed as I had prepared myself for the op. They did heaps of bloodtests including a bleeding test which showed the result. Take care Femme

How I found your page: From a search engine
Comments about the web site: Can someone please give me the name and number of a Dr. who has treated pheochromocytoma. There doesn't seem to be anyone in my area. We are willing to relocate.

How I found your page: Member
Comments about the web site: Hello and Best to All, Just a couple of questions today. Rearding the "nervousness" which we experience: Has anyone been diagnosed with a Neurological Disorder called "Essential Tremor ?" Could tha be a condition which would be "masked" by the severity of our other symptoms, and thus overlooked ? It is a condition which is "alchohol responsive" that is temporary relief can be found therough the use of Alchohol, and that leads to my second question: has Pheochromocytoma been found to be "Alchohol responsive" ? Any thoughts (or answers) would be greatly appreciated. E-mail is welcome at chipsel@theglobe.com Again Best wishes and Thank You to All Gary

How I found your page: From a search engine
Comments about the web site: Dear All, My mum was diagnosed with cancer of the kidney back in Dec 98, they removed her kidney straight away without doing further tests.Mum went back to see the consultant in March 99, the consultant informed my mum that what she had was actually Pheo, they proceded to scan my mum's other kidney and also her bladder, they were clear.The consultant told my mum it could take upto 18 months b4 she felt herself again. For 14 months my mum went through severe pain putting it down to recovery! Eventually the pain got that bad she went back to the Dr's. Scan's were done, blood tests, only to be told again that what she had was Pheo!!Only this time it had spread to her liver and lungs also in the area where the kidney was removed previously. Mum was sent for MIGB scans last Mon and Tues, back to see the Dr on Weds. Mum was not MIGB sensitive, however, the Dr wants to start mum with (opec)? chemo as soon as possible. I asked the Dr why ? His response was that once she starts on chemo she may become MIGB sensitive?What I would like to know is.....How does the Dr know that the tumours in her Liver and Lungs are malignant? I'm very worried!!! Previously, when my mum's kidney was removed she had private healthcare, therefore, mum chose who was going to perform the op, however , now mum is having it done through the NHS here in the UK, so we are unable to pick and choose who performs the op. Please could someone give me some advice. Sincerely Julie

How I found your page: From a search engine
Comments about the web site: First, thank you for the site and to all who share information to help us all. Do any of you have information about City of Hope in Duarte, CA? Any experience with pheo treatment there? I see they are doing a clinical trial with MIBG therapy, but I am wondering if they treat many pheo patients and how they compare to Duke, Michigan and Mayo. Does anyone know of knowledgable doctors and treatment in the western US? Everything seems to be in the East. Best wishes to you all. AJ

How I found your page: From a search engine
Comments about the web site: I just found the site and am a bit amazed- who would have thought it. I have a question (one of many!) - I was diagnosed 13 years ago at, incidentally, age 13. I had surgery, chemo, radiation, and MIBG therapy (blah, blah, blah). Cancer dormant for 6-7 years. Question- I have very shaky hands, and this is getting worse as years go on. No doctor can explain it so I stop asking years ago. Have other people experienced the same thing? Thanks.

How I found your page: Link from another web page
Comments about the web site: I have Pheochromocytoma that has come back after surgery in 1995. My doctors believe that it has spread to my bones.

How I found your page: From a search engine
Comments about the web site: To Jim Walsh: My husband has malignant pheo, which metastisized to bone.(and has been very aggressive) He has NUMEROUS bony lesions throughout his body. If your doctors suspect this, I hope that you have a bone scan scheduled ASAP and an MIBG scan. If bone metastisis is confirmed I would strongly recommend that you look into MIBG therapy as treatment. Good Luck to you!

How I found your page: From a search engine
Comments about the web site: I'm currently going through my second battery of tests in 18 mos. First Dr. ruled out pheo, but new endo. suggests a pheo. Tumor has been biopsied and results being that it "resembled a benighn adeonoma". Have started having "episodes" indicative of a pheo. Has anyone one else experienced such an unusual turn of events concerning their diagnosis? Hope to get new results soon. Prayers to all. Thanks for being here.

How I found your page: From a search engine
Comments about the web site: sandra mentioned ""episodes" indicative of a pheo.". What episodes are indicative of a pheo? my endo is testing me for pheo's, am really new at this, really scared. second question, the "nodules" are located within both adrenals, why can't they simply remove the nodules & leave the adrenals? 3rd & last question (for now): if they remove both adrenals, does this automatically make me addison's? thanks, a scared newbie to your world, jane

How I found your page: From a search engine
Comments about the web site: I have a question for Jim - How did you realize that your Pheo had returned? Did you have symptoms all along, or did you find it through the urine? I ask because I had surgery almost 2 years ago, and I am experiencing symptoms again, and yet, all the tests come back negative. I would love to know what you have and are experiencing now. I am also sorry that you have to go through this again.... Much and love and support to you my friend....to everyone as well....

How I found your page: A friend told me
Comments about the web site: Mar'99 my 12 year old son had a benign pheo surgically removed. His BP has been wonderful and has been on no medications since then. For the past month he has complained about feeling dizzy when he stands up. I've shrugged it off (somehow) and figured it was the heat, or he had eaten in a while. I've started checking his BP when this happens, and find it somewhat low (98/57). Any thoughts? Should I be concerned?

How I found your page: From a search engine
Comments about the web site: To Judy: When you check your son's BP, are you checking it when he lays, sits, and then stands? If it's low upon standing, there is more than a 20pt. difference between sitting and standing, he is orthostatic. My husband, who has very aggressive malignant pheo has recently become orthostatic. Right now the docs aren't sure why. I have heard of others with pheo having this problem, and am currently trying to do some research into this 'new' problem. There may be other references to this on this website(which has been a tremendous source of info for us). Some people also become hypotensive for periods of time with this disease. In any case, if you haven't already, you should be mentioning this to your son's doctor......Robbie

How I found your page: A friend told me
Comments about the web site: Robbie, Thanks for the response. When we've taken my son's BP he had been either sitting or lying down, and upon getting up would be dizzy. He would sit to do the BP. We are VERY familiar with the orthostatic routine as he did this a number of days when hospitalized prior to surgery. As an inquisitive 12 year old he had orthostatic all figured out, knew what meds he was on, and as scarey as it sounds, knew several times when he was brought the wrong dosage! I feel like I worry too much, because after what we went thru a year ago -- every "slight" possibility mentioned by a doctor always seemed to happen. We are now dealing with my 23 year old son -- diagnosed 5/00 with malignant pheos throughout his body--many bone lesions. He just got done radiation, and will be starting a chemo series early Sept. I'd be curious if you have any particular treatment that has worked with your husband. They have starting my son with a combination of 3 chemo drugs which the doctor felt had a pretty good track record for pheos. My aunt and cousin died in the 60s of meta pheos...we are obviously very concerned. Any suggestions would be great. Thanks.

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Comments about the web site: Dear Judy (Furlong), Please check the BLACK Pheo Support internet chat board. I have moved up a topic entitled "Pheos in/on Bones" that I thought might be of interest to you and your family.

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Comments about the web site: Judy, I am so sorry to hear that your sons are so young and have this awful disease. My husband has NUMEROUS bony lesions. Have you considered MIBG therapy as a treatment instead of chemo??? My husband has gone for 2 MIBG therapy treatments, his first last dec. and the most recent was June 9,'00. We opted for this because we hadn't been able to find anyone who had had very positive results with chemo. Even the docs weren't overly encouraging about chemo. We thought it was certainly worth the try with the MIBG. It has helped him some. He has been able to reduce his dosage of dibenzyline and atenolol due to his BP becoming more normal.(and I said before, he has the orthostatic problem, which seems to be getting a little better) In between MIBG treatments, he has had approx. 14 different bony lesions 'zapped' with external radiation. This is done primarily for pain management, and has worked well. You didn't say where you live, but I would strongly encourage you to look into MIBG therapy ASAP before you start chemo. If you need any more info on this I will be glad to share with you how we went about locating a medical facility and getting our docs to refer us......Robbie

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Comments about the web site: Judy, I agree with Robbie. We also have not found anyone who is doing great long term with chemo. I hope you will look into the MIBG therapy. Since our son could not take the MIBG (he is one of the growing many who are not sensitive to MIBG)-he is taking Octreotide therapy, which is very similar. There seems to be so many advancements since the chemo option. Please feel free to email me if I can give you any info that may help. Our son (now 27 and healthier than he has ever been) had metastaic aggressive pheos starting at age 10. It is so hard! God bless.

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Comments about the web site: Robbie, and all... thanks for so much feedback. Our family lives in southern NH and our son is under the care of Dana Farber Cancer Inst. Our initial referral was to Childrens (Boston) as our 12 yr old was first for diagnosis. I have read about the MIBG and mentioned it to his doctor. He seemed to think this was quite experimental still, but has encouraged us to pursue all avenues. The chemo treatment is slated for up to 6 months, and there is no plan yet for after that. I have provided Dr. Pacak's name and tel # at NIH as a great source of info for the Dana Farber docs. When Jeff had the MIBG done as a test, he lit up like a Christmas tree so I think he'd be a good candidate for this treatment.

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Comments about the web site: Judy, since your son 'lit up' on his MIBG scan I would definitely look into MIBG therapy before beginning chemo. MIBG has been used as standard treatment on many other industrialized countries, our FDA here in the good ol' USA has just been very slow in approving it here for general use. My husband had his treatment at Duke University Medical Center. At Duke they use MIBG therapy for pheo, carcinoid syndrome, and will soon begin a protocol on pediatric neuroblastoma. Due to the fact that there aren't many metastatic pheo patients, they haven't treated a great number of patients, I think the number is still under 100. As with any treatment, each individual will respond differently. They have had some who have responded very well. I can certainly give you very specific info on this and give you doctor names, etc. if you would like. Please email me at rcaster1@rochester.rr.com. We live in the rochester, ny area......Robbie

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Comments about the web site: Questions on MIBG. Robbie mentioned doing this BEFORE chemo...any particular need for it to be before any chemo, or just for faster results? 2nd question, I had looked on a web site for a Dr. Paul Fitzgerald in SanFran who is doing MIBGs and his info indicates poor results with bone lesions. Comments?

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Comments about the web site: Hi everyone. I'm back from surgery again. I've written email replies to most of the persons who posted while I was gone. Thank you to those who are helping with responses and information on this board. We truly appreciate it! Sincerely, Mary

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Comments about the web site: OK HELP! I just got back from my ultra sound--and theyfound a 7.5 cm solid mass with 2cm fluid. They suspect adrenal carcinoma. The CT is scheduled for Wed. The other organs looked ok--but I have been web-sufing to find out any info I can. If it is Cancer--what do you guys recommend or advice me? If it isn't? I live in a very small town and wonder if I should get treatment somewhere else--as this whole thing seems to be so rare. I will keep informing myself but any help anyone offers is gratefully accepted. Thanks!

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Comments about the web site: Hi Beverly. I noted on your post that doctors suspect you have adrenal carcinoma. I wanted to tell you that 90% of pheochromocytoma are not malignant. So I am wondering if the doctors have some information already at hand that indicates that the found mass is actually malignant? Before I can help, and know what to recommend as far as doctors and treatment are concerned, I need to know. I've written an email to you explaining further details. Take care, and please write to me. Sincerely, Mary

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Comments about the web site: Dear Judy: I have seen Dr. Fitzgerald's site before, and it is informative as far as definitions and other basic data is concerned. However, I have been told by other physicians that some of the information on that particular site is not the most current at this point in time. I read of other studies of persons with bone lesions, and they have had better results with the MIBG treatments than what Dr. Fitzgerald describes. Also, Robbie and Casey have been a great help to us in providing answers from practical experience. I consider that valuable help! Sincerely, Mary

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Comments about the web site: Hi Gavin. I've written a private email to you about your question, and I hope to help find an answer to your problem. With regard to whether any of us have the shaky hands, the answer is yes. But there are a number of things that can cause that problem, so I wrote to you about some of the details. Take care, and feel free to write to me about this or any other questions. Sincerely, Mary

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Comments about the web site: I had my right adrenal gland removed on 7/20- tumor was benign. I was not told what kind of tumor it was. I didn,t know to ask. Could this just have been a harmless mass or will I have ongoing problems? I still have no energy and my BP still goes up. Any info will be helpful. I'm not sure what guestions I should be asking my doctors.

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Comments about the web site: Hi Jennifer, I am having problems getting email to send to your address. Please let me know what location for the doctor? We will do our best to find one that is experienced. Kindest regards, Mary

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Comments about the web site: Dear Bonnie: I cannot imagine that your physicians and surgeon haven't told you what kind of adrenal tumor you had. It is good to know it was benign, however you have a right to know more information about it and what to expect healthwise in the future. I don't think it matters that you haven't asked them, because you shouldn't have to ask, but it looks as if that will have to be done. With regard to questions to ask doctors, I think you will have to inquire as to what type of benign tumor it was, in other words, spontaneous or inherited, and what followup testing will have to be done. You deserve some better answers than you have been given, in my humble opinion. Feel free to contact us anytime. There are many here who care about you. Sincerely, Mary

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Comments about the web site: I had pheo removed from right adrenal in Jan 2000. I still experience various symptoms episodically as I did before the surgery, especially the sweating. Does anyone else continue to experience sweating and symptoms after removal?

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Comments about the web site: Dear All, Just a few words to let you know how my mums doing!Unfortunately, mum was not MIBG sensitive.However, Casey informed me of the Octreoscan/Octreotide treatment, so I tried my hardest to push for this treatment for my mum,the Dr's seemed to think that my mums pheo was very aggresive and fast growing , so didn't seem to think it would be the best treatment for mum. Mum started on O.P.E.C chemo on Tues of this week, she has the chemo over 3 days , then goes back in 3 wks for another dose, it is an ongoing treatment until they start to see an improvement. Mum is very weak at present, she is suffering with alot of pain ,but we are all staying positive and praying that this will work for her!I am grateful to you all for the support you have shown me , especially to Casey and Mary. I will keep you all informed, sincerely Julie.... Mary, I pray that you feel better very soon.

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Comments about the web site: Thank you, Julie. I am doing better now. Regarding a physician in the UK, we've had several responses from persons in our group. I hope these referrals might help? I am forwarding them to you. Please do keep us updated on what is happening with your mother. Sincerely, Mary

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Comments about the web site: Dear Trish: Several of our members have complained of still experiencing various symptoms episodically after surgery, including the sweating. My aunt was told that hers was "residual" and that it might take several months to get back to normal. I am not sure if what he said is fact, based on study. Has your doctor looked for reasons as to why you are still having those symptoms? Also, I am wondering if the sweats are accompanied by the other symptoms you usually had with episodes?

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Comments about the web site: Hi Ann: I am waiting to hear back from City of Hope staff to find if they are experienced in MIBG therapy for pheochromocytoma patients. Every doctor I have talked with thinks highly of City of Hope. Apparently, they are a part of the National Cancer Institute and have a good deal of funds for doing research right now. Nevertheless, I'd like to hear what they have done for pheo patients. I just wanted to let you know that I am trying to find information. Apparently, no one in this particular group has gone to City of Hope for the MIBG therapy. I expect to hear back from them, you know how hospitals can be. I will write back soon as I know something. Sincerely, Mary Peebels

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Comments about the web site: For Sandra and Jane: Both of you have asked for the general symptoms of Pheochromocytoma. The symptoms vary with each person. The following symptoms are the classic ones that the NCI lists, but they don't mention nausea, which many in our group have also experienced: Rapid heartbeat following exercise, emotional upset or exposure to cold. Tremors and nervousness, can be accompanied by anxiety. Feelings of impending doom. Episodes of flushing. Sweating. Weakness and fatigue. Very high blood-pressure spikes, accompanied by headaches. Unexplained weight loss. Episodes of at least some of these symptoms may occur several times a day or only occasionally (up to 2 months apart).

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Comments about the web site: Specifically to Sandra: I think your new endocrinologist is correct in wanting to run new tests to rule out whether or not your benign tumor was a Pheochromocytoma. Your tumor was biopsied and results showed that it "resembled a benign adeonoma". Since you have started having "episodes" indicative of a pheo, it is important to follow up with more conclusive testing. Most pheos are benign. Regarding whether "Has anyone one else experienced such an unusual turn of events concerning their diagnosis?" We have a few who have thought they had pheo and it was found that they didn't; however, there was always another medical condition which was causing the problems. I am inclined to agree with your new doctor, since it is very important to know what type of adrenal tumor it was, and what type of medicines you might need.

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Comments about the web site: Specifically to Jane: Regarding your 2nd question, "The "nodules" are located within both adrenals, why can't they simply remove the nodules & leave the adrenals?" It may be that only the nodules have to be removed. It depends on what type of pheo you have. In most cases, the tumor or nodule is usually benign and does not spread to other organs. About your 3rd question, "If they remove both adrenals, does this automatically make me have Addison's?" You will need follow up treatment if both adrenals are removed, and we have several members who can share good experiences with you if that becomes the case. Always feel welcome to post any questions you have at our boards. That is why we are here. Sincerely, Mary

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Comments about the web site: Hi to everyone. If any of you have heard back from Jim Walsh, please let us know? He posted earlier about having return of pheo, and his doctors think it has spread to his bones. I wrote to him, and I noted that several others responded on this board. Many of us are concerned about him and what is being done to help him. Sincerely, Mary

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Comments about the web site: mary, thank you for answering my prev posts, have learned alot from this site. do need some further help, i presently have an endo (spec diabeties), am having trouble getting the results from my latest 24hr test. i have been dx'd with bilateral nodular adrenal hyperplasia (2 ct scans), 24 hr tested (on a less than 50 is normal)55, 52, 57, then 32 re: cortisol levels, questioning cushing's. however, next to last test they tested catecholamine levels, metanephrine was 553 with "elevated" norepinephrine. i CAN not get him to tell me the results of my last 24hr, total frustration, it has been 4 weeks now. my endo mentioned my going to mayo's, he suggested a dr who is also a diabetic spec who spec in adrenal probs. i am about to do my own referral & try to get into mayo's, have lots of physical symptoms of pheo & cushing's (they seem to overlap). in your judgement, would this be the thing to do? can you & would you recommend a dr at mayo's? i am one scared newbie to this game & really am not too fond of it! from your posts you're not doing so swell yourself, almost hate to bother you...but thanks, i am feeling lost. jane

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Comments about the web site: dr. ordered blood and urine (24hr) to be done. have blood results and have not recieved urine test back. the only two abnormal readings are white blood count and neutrophils..are these any help trying to diagnose pheo?

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Comments about the web site: hello, i have had relatives to pass away due to men2a. my biological father presently suffers from this syndrome. i know very little about this illness. my father and i have no contact. i do know that we both suffer from mental disorders that have been successfully treated with modern medicine but i do not know if that is a symtom. i've heard that it is very rare and inherited. if possible please send me a list of symptomes. thanks for your time, unome19-juno

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Comments about the web site: mary, i posted a couple of messages back, today i heard from my endo & based on the new tests, he believes it is pheo in both adrenals. tomorrow i get my appointment at mayo's, haven't a clue what they will say or do. one question...can you have both pheo & cushing's? i have most of the pheo symptoms but also have so many cushing's...??? it's a puzzlement. do hope you are doing better, worry about you! thanks for all your help, jane

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Comments about the web site: CAN A PHEO TUMOR BE REMOVED USING A ENDOSCOPIC PROCEDURE?

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Comments about the web site: Dear Jane (Lawrence), I have written a private email to you, as I have some answers but some questions also. Sincerely, Mary

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Comments about the web site: Dear Allie, while those counts are important to be taken into consideration, there are many other levels that have to be analyzed to diagnose pheo. I think your physician should be giving you a copy of your test results for you to see now, and to keep for future reference. Sincerely, Mary

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Comments about the web site: Hi Phil. I don't recall any pheos being removed by endoscopy. I'll have to put the question to other members. If someone here has heard of it, I hope they will discuss the information. I know several members have had "Lap", or laprascopic removal of pheos, which is much smaller incisions than the more involved surgery. Endoscopy generally deals with procedures where an instrument is used for visualizing the interior of a hollow organ, such as an intestine or urethra. I am wondering if you are asking about the "Lap" type?

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Comments about the web site: Hi Roy (Anderson). I also have MEN2a. I will send you the information you are requesting. Let us know how you are doing?

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Comments about the web site: Hi to everyone. I have been watching this board for a sometime now, and I just want to say that this is a great source of information and support. I've been to other support sites, but I was really disappointed to find that when I asked a question, I received an email back saying something like they couldn't give medical advice. It's funny, I didn't really ask for medical advice, all I asked for was information. That was when I found your site through a link. Thank you for giving me the information I wanted.

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Comments about the web site: I have paroxysmal hypertension, often brought on by exercise. Since taking a-blockers and b-blockers the hypertension bouts are not as bad. CT-scan of adrenals shows no growths. When dye was injected I had pain below the ears. I am now getting pressure and ringing in ears. Anyone else had this ?

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Comments about the web site: My mother is about to undergo the clonidine suppression test September 13. She has already had the urine test and they said she had a pheo. Well she went to an endocrinologist who said she needed this test done to make sure. My concern is they are both saying two different things. The surgeon she went to first and now the endo doctor. The surgeon said she couldn't have lapo surgery since the tumor is 6cm, but the endo doctor said she could. She's been getting the run around but everyone's saying she needs to get this tumor out. Has anyone been through the clonidine suppression test? What was involved and how was it? Also what about recovery after the surgery? How long did it take and how did you feel? Thanks.

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Comments about the web site: G'day to all, Here I am again, home with surgery canceled for the second time. I went into hospital on the 29th August for an Adrenalectomy, after numerous bloodtests it was concluded my blood was still to thin for save surgery. I had stopped all medication in relation to thinning the blood 2 weeks prior to surgery as requested by doc. So the question was why, to find the answer to this it was decided by the hemotologist to do a bone marrow biopsy? Not a very procedure, at least they knocked me out completly, so did not feel a thing. now we are just waiting for the results (scary stuff). More so, as in the last 4 weeks my cousin has been diagnosed with breast cancer (age 37) and my aunt ( age 57), her mother with lung cancer, this person never had a cigarette in her life. Well as the saying goes, positive thoughts and prayers go a long way. Will keep you up to date of further development in relation to op. Take care my friends and supporters, may your guardian angel watch over each and every one of you.