Vinnie's Website Pages

Welcome to Vinnie's Website Pages. Vinnie found our group through the Internet, and contacted us to offer kindness and understanding to others in their time of need. Vinnie has now passed away, and we wish to keep her pages up as a tribute to the beautiful person that she was.

Vinnie was particularly concerned about member Robin, also on this group site. Vinnie asked the Webmaster to get in touch with Robin and send a message of support to her. Actually, Vinnie's letter touched us all.

Dear Mary 3: Could you please forward this to Robin? I am trying to reply to her call for people with symptoms like hers. My experience was very similar. I can't get my message to go through. Robin's address is Robin4111@aol.com. Feel free to read it yourself. Many thanks, Vinnie

Dear Robin: You put out a call for people with symptoms and experiences like yours. I believe I can respond.

After years of suffering pain, paroxysms, and spiking BP, I was found to have a 6cm R adrenal pheochromocytoma. In Nov. '92 I underwent adrenalectomy, and the doctors said the tumor was benign and that I didn't need chemo or radiation or any kind of follow-up. Congratulations on your normal life expectancy, they chortled.

WRONG!!!! By Sept. '95 I was deathly ill. All the old pheo symptoms had returned, plus sharp shooting pains in places seemingly unrelated to an endocrine disorder--chiefly, my right leg. I went to dozens of doctors begging for help with the leg pain. The first thing I told these doctors about my medical history was that I had had a R adrenal pheo. Tut, tut--no connection to your leg pain, they all said. But finally I became so crippled that my R leg was dragging. Somebody ordered a bone scan.

And there it was in all its ugly metastasis. The supposedly benign pheo of '92 had, by 1995, spread to my entire R femur, 8 vertebrae, R clavicle, sternum, L humerus, L femur-head, both hip sockets, and several spots in my ribs. I had shrunk almost 2" shorter due to compression fractures in my vertebrae from pheo malignancies. A 16" titanium rod was inserted into my R femur--or what was left of it from the cancer.

I was told my situation was terminal, but that I would be given external radiation and chemo to palliate the pain. The external RT helped the pain a little, but the chemo was totally useless (the regimen I received has since been discredited). The cancer actually grew rapidly during chemo, and the doctors stopped my protocols half-way through and sent me home to die.

A month later, I heard about MIBG therapy. My husband launched into a frenzy of net-working and got 3 doctors (one in U.S., one in Canada, and one in Amsterdam) to agree to try MIBG therapy on me. I went to Duke University in North Carolina because it is the closest to our home.

First I had to take the MIBG uptake test. Fortunately, I passed, which meant I could have MIBG therapy. Only about one in 4 people has the right body chemistry to take MIBG.

When I arrived at Duke in the summer of '96, I had maybe six months left--more likely only three. I was crippled, wracked with pain, and loaded with morphine around the clock. The MIBG uptake test showed that not only did I have pheo in all the afore-mentioned bones, but had it in soft tissues and lymph nodes too. The Duke doctors started MIBG therapy immediately.

Over the past two years, I have had 4 MIBG treatments at Duke. I am out of pain, free of paroxysms, can walk perfectly normally, and have returned to teaching and gardening and the pleasant routine of everyday life with my husband and daughter. Scans show that many of my small freckly mets have completely disappeared with MIBG treatment, and the massive malignancies have shrunk--in some spots to almost nothing.

My status is still considered terminal; there is no cure for malignant pheo. However, MIBG treatment at Duke has given me more than 2-and-a-half wonderful pain-free years. I've been on walking trips to Europe twice, built a new house, and resumed giving dinner parties. Although I can't be cured, my hope is that MIBG can keep my pheo suppressed to a sort of chronic condition--rather like diabetes. It's there, but controllable with MIBG.

Robin, my advice to you is to NEVER NEVER NEVER accept a doctor's word that anything related to pheo is benign--especially with the symptoms of headache, insomnia, and heart-raciness you describe. Get an MIBG scan ASAP!!!!

The insidiousness of pheo is this: the original adrenal tumor is a big nasty brute that appears, to your immune system, to be the sole source of trouble. But adrenal pheos have an sneaky way of micro-seeding the whole body. Your revved-up immune system, at war with your goliath adrenal, keeps the seeds in check, so no one knows they're there. The only test that has a chance of picking up any of these micro-seeds is the MIBG scan, but most doctors have little experience with it. So they slice and dice the big tumor, which they see as "benign" and think their job is done. After the adrenalectomy, the immune system, which was geared up to deal with the big pheo, reads its absence as Hurray!-I-won-now-off-to-Disneyland. And the immune system idles down to a much slower pace. That's when the micro-seeds sprout. And grow. And grow.

Robin, if I could wave a magic wand, I would make it MANDATORY medical procedure that every "benign" adrenalectomy would be followed up with some sort of mop-up treatment, preferably a dose of MIBG if the patient could take it, just to catch and kill any pheo seeds out there.

My original doctors messed up. They misread path reports, ignored my symptoms, didn't follow through with either tests or prophylaxis. They could have avoided or at least minimized the situation I am in now. They trusted the manuals that said 90% of pheos are benign.

Pheochromocytoma is not an easily diagnosed disease. But once it's found, no doctor or patient should ever take anything for granted after that. One renowned endocrinologist at Duke told me that he doesn't believe there is any such thing as a benign pheo--they are all malignant eventually. People who seemingly have no problems after adrenalectomy were, by sheer good luck, caught so early that the tumor didn't have time to plant enough micro-seeds. This Duke endocrinologist also thinks pheo is not as rare as the medical texts say, and that doctors just under-diagnose it.

This letter is long, but I hope it helps, Robin. Get an MIBG scan done immediately. If your body can uptake MIBG for the scan, it can uptake MIBG for treatment.

Only a very few hospitals in the U.S. give MIBG as therapy. It is considered experimental by the FDA, but it is STANDARD treatment for metastatic pheo at Duke University Medical Center and all European cancer centers. Why the US FDA is so slow to accept MIBG therapy when it has been standard practice in Europe for more than a decade, I don't know.

Duke has the most economical MIBG therapy in the country. A hospital in San Francisco charges $50,000 per treatment. My treatments at DUMC cost between $5,000 and $6,000 each, including all hospital and pharmacy costs and air fare and travel expenses to Durham, NC. Insurance pays for almost all my MIBG treatment.

MIBG is radioactive iodine and is the molecular twin of nor-epinephrine. MIBG "binds" to NE-loaded pheo cells and thus auto-irradiates the cancer. MIBG is given IV through a simple butterfly needle in the arm. This 5-minute infusion takes place in a lead-lined isolation room, which the patient may not leave until his Geiger counter readings drop to a safe level. This may take 3-6 days. I experienced a mild nausea during isolation which was controlled by anti-nausea meds. Many MIBG patients have no symptoms at all during isolation except boredom at confinement. MIBG is considered a very gentle treatment compared to chemo and surgery. Crosswords help.

Because MIBG is a systemic, it does whack blood counts, and most patients experience varying degrees of anemia, leukopenia, or low platelets. Sometimes it's no worse than a few days of fatigue. Other times patients get so wiped out they have to have blood transfusions and take shots to energize their bone marrow. I only had a little tiredness after my first two MIBG treatments, but needed transfusions and growth-cell shots after the last two. I learned to give myself the shots. Used insulin needles--it was no big deal.

Robin, if there is anything you want to know about pheo, radiation, chemo, MIBG, isolation, hospitals, contacts with doctors--whatever--I will be glad to help you. Just drop me a line. Good luck--and get an MIBG scan soon.

Sincerely, Vinnie

Vinnie was truly supportive to persons needing any encouragement or information. We are proud to have known this wonderful and inspiring woman.