yava Registered User
Posts: 1
(3/17/04 1:05 am) Reply
men2b
Hi all! I'm 19 years old and when I was 12 I was diagnosed with MEN2B. I immediately got a thyroidectomy and they removed 2 parathyroids... as for the other 2, well, 1 was missing and the other was cancer free so they put it back in my neck(since then it's been realized that it did have cancer in it, I'm tickled pink about that). After surgery my calcitonin levels were still extremely high so they knew cancer was still hangin' around somewhere- but it never popped up in any scans... until this past month. Yeap, just my luck that it showed up in my lung and chest cavity. Oh, and in my neck- again. Kinda rough news to handle but eh, at least its still small and supposedly slow growing. In the past year I have also aquired symptoms from various other fun little problems MEN2B causes, its all kind of wearing me down at the moment.
I've never met anyone with MEN2B, the last I heard there are approximately 100 known cases world. I've never felt alone in having cancer, but since I've been diagnosed with these new problems caused by MEN2B and getting told I have cancer for a second time in my young life, I suddenly feel like the only person with MEN2B at least. It's a long shot, but I'd like to get in contact with others who have this disease. Heck, if anyone has ANY info or links to specific MEN2B groups, it would be MUCH appreciated... my email is yava3@hotmail.com Thanks and I hope everyone is feeling well!
cleo88 Registered User
Posts: 1
(3/24/04 8:53 am) Reply
Re: men2b
Hi Yava,
I my self have been looking for someone that has MEN2. I found out about it last February and have had to have 2 surgeries within the past four months for a pheochromacytoma and hyperparathyroidism which also had tumors on them. So your not alone in this and there are a few of us out here. All I see in these web sites are MEN1 and not to many of the MEN2.
Does anyone in your family have it also? I am the only one, they think that my father had it, because he had a heart attack during surgery. He was never tested because he passed on as a direct result of the attack. I also found out about Medullary Thyroid Cancer back in 1988 when I was 21 it had also spread in the surrounding areas. I have had four surgeries on my neck for it so far. Haven't done any chemo nor do i really want too, but if I had to thu, I would.
I hope you are able to find someone that has the same kind of MEN. It is nice to have someone that knows what you are going thru. Much luck!
Cleo
heatherhermstad
Unregistered User
(4/7/04 10:56 pm) Reply
i'm 21 with men 2b also!
I just came across your passage, and have to let you know I'm out here with you. Your story is almost identical to mine, I was 12 also, but unfortunately, all of my parathyroids are gone. My surgeon has never operated on a patient like us, and I think he was just trying to be efficient just in case...good call! I'm 21, and last week my MD called me to let me know he spoke with Dr. Gagel over at MD Anderson in TX, and the spots that showed up on my last CT are concerning to him. There are lesions on my liver, lungs, and a couple in my neck. The ones in my liver are of greatest concern. The next step for now, is to see an oncologist...I've still never seen an adult MD because the pediatric oncologist, who has never really been able to offer much for me, instead has just kept in touch and kept her eyes and ears open just in case something ever comes up that she can offer. That said, an adult oncologist will be the one to ok the trip to send me to again, see Dr. Gagel for possible experimental treatment. Have you seen Dr. Gagel, yet? If not, I encourage you to check him out. Just type Robert Gagel in a search field. Anyway, my name is Heather and I'm in Southern CA. Please write sometime, it'd be nice, for the first time, to have somebody to talk to who understands what we're facing. My email address is heather.hermstad@uhsinc.com Continue to take care!
Re: men2b
Hi Guys.
I'm a single dad to a son (Kenny 17yrs and a daughter 15yrs)My daughter (Amanda) has MEN2B. This is the first time I've gone on the web to search out support. She was diagnosed when she was 10. She immidiately had a thyroidectomy and we have been going to see her Dr. and for blood tests twice a year ever since and everything has been OK. I just heard from her Dr. a few days ago that Amanda's calcitonin levels have been elevating over the past year. I've been a basket case ever since. I told Amanda about the elevated levels and that she will probably have to go for tests but I've really tried to play it down to her. I guess I've tried to push this to the back of my mind the past few years and hoped it would just go away. I know this is unrealistic but it's what I've done. Now it's all coming back to the surface. After Amanda and I have a better handle on what's going on here, I think I'll tell her about this forum.
Anyway....I'm glad I found this place because I think I'm going to need your support and companionship.
I am sorry to hear about your daughter's health problems. I don't have MEN2b, I have MEN2a with problems very similar.
I am curious about how high her calcitonin levels are? My MTC was not caught in time and I have tiny tumors of it spread all over my body, such as my liver, pancreas, lungs, kidney, esophagus, stomach, and so on. I am told that these cancers are tiny, and that they are extremely slow growing. My specialist quite frankly told me that they are so slow growing that I would probably die of causes other than that. If you wish to compare after surgery calcitonin levels and embryonics, here is a list of my levels which have remained status quo for over 5 years: members.aol.com/ThreePeb/...onin1.html
You have probably been told that there is another part of MEN2b which needs to be followed up on, and that is pheochromocytoma. It is a good idea to keep a watch on your daughter's blood pressure if she has any indications of a problem.
I would like to see all of us network with each other and gain the combined experience and knowledge. I post often at another board which involves pheochromocytoma and MENS illness. The link is: b13.ezboard.com/fpheochro...heosupport
Your daughter would probably benefit from visiting with others who have gone through what she has had to deal with, I was about her age when my problems started.
The important thing is that she knows she is not alone, and that she is a suvivor.
Re: MENS
Thanks Mary. I really don't know what Amanda's calcitonin levels are. We live on a small island and I have been corresponding with her doctor about this through email. She is working with a couple of other doctors trying to come up with a testing protocol for this. One of them is the doctor from Montreal Childrens hospital who did the tyroidectomy several years ago. (Dr. LeBerge I think)
As I kind of indicated in my first post, I've been kind of in denial about this syndrome and I'm afraid it's left me pretty ignorant on the subject. Amanda's doctor has always asked if I had any questions when we visit but besides not knowing what to ask, I was afraid to ask because I was afraid of what the answerers might be.
I have to run right now but I have much more to say and ask......
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