cleo88
Registered User
Posts: 1
(3/23/04 10:21 am)
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Multipile Endocrine Neoplasia- MEN2
I have MEN 2 and have been looking in vane to find other people with this disorder. I have Medullary Thyroid Cancer which had already spread into the lymph system. I found out about this in 1988. In Feb of 2003 I found out about the MEN 2. I had a Pheochromacytoma and Hyperparathyroidism with adnomas. My adrenaline level was over 4,000 when I found out and my PTH level was 207. When I first found out about the cancer the doctors told me that it was rare to see this type of cancer spread as much as it had in someone at the age of 21. I am now 39 and there are alot more things that are starting to happen to me. My back, legs are just falling apart.
I am just trying to find out what I can about this and what is going to happen to me with it. I haven't done any chemo, but I have had alot of surgeries 2 within the past 4 months and a total of ten sense 88. They are checking me again for another Pheo, I guess they can spread like cancer even thu this type of tumor is usually not cancerous. I also heard that pheo's can spread into the gangilion.(spelling?) What effect will this have on me.
I am looking for the truth about this disease whether it be good or bad. Any info would be great and to hear from someone with it would be even better.
cleo
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