Looking for anyone with MEN2B, or just MEN

kendrarajan
kendrarajan Member Posts: 17
edited March 2014 in Rare and Other Cancers #1
I'm 19, and have been a survivor of medullary carcinoma of the thyroid, ie thyroid cancer, for 6 years. i really want to find someone with my disorder. Are you out there? I have Multiple Endocrine Neoplasia type 2B.

Comments

  • mattg
    mattg Member Posts: 3
    #2
    hi, i have men type 2b. i
    hi, i have men type 2b. i discovered it right after i turned 20. i've had thyroid/parathyroid, adrenal and gull bladder removed. not sure if it's all related to men 2b. also have had pancreas problems, but that could be do to kidneys/bladder. they don't work on me either.

    matt
  • dougnatalie
    dougnatalie Member Posts: 2
    #3
    Can I ask you a question?
    I can't find my previous post. My 9 year old has MEN 2B. She was diagnosed with MTC last Fall and they removed her Thyroid and Para-thyroids. She is having bowel problems now, what has your experience been with this if you don't mind me asking? Right now we are trying all kids of Laxitives and Fiber supplements. Any ideas?
    Thanks for your help!
  • kendrarajan
    kendrarajan Member Posts: 17
    #4
    dougnatalie said:

    Can I ask you a question?
    I can't find my previous post. My 9 year old has MEN 2B. She was diagnosed with MTC last Fall and they removed her Thyroid and Para-thyroids. She is having bowel problems now, what has your experience been with this if you don't mind me asking? Right now we are trying all kids of Laxitives and Fiber supplements. Any ideas?
    Thanks for your help!

    Doug, I found your last post around a week ago, and posted this reply. Figuring out these forums can be a bit tricky, but once you get the hang of it it is almost a piece of cake.

    Wow. I can't believe I actually found someone who has MEN2B. And a kid at that. I was diagnosed at 11, and had my thyroid and tumor out 2 days after my 12 bday. and one more surgury a year and a half later folowed by radiation, and I am cancer free for 6 years. im 19 and in college now. just reciently I have been getting to know this rare genetic disorder, and because it is so rare, my docs really didn't know much. As for speacialists, unless you count my parents, i don't know of any. my doc's were forced to do the reasearch when i came along. But I am more then happy to get to know you, and if you want i could ask my parents more about who knows what. I didn't have the bowel problems, but other then that i am a textbook case. Mafanoid body type and all. My email is kendrarajan@yahoo.com, i would love to get to know more about your daughter. Stay strong, Have hope, Kendra
  • kendrarajan
    kendrarajan Member Posts: 17
    #5
    mattg said:

    hi, i have men type 2b. i
    hi, i have men type 2b. i discovered it right after i turned 20. i've had thyroid/parathyroid, adrenal and gull bladder removed. not sure if it's all related to men 2b. also have had pancreas problems, but that could be do to kidneys/bladder. they don't work on me either.

    matt

    Thanks!
    Mind if I ask how old you are now? And do you have the marfanoid body type? I'm finally realizing i am not the only one out there, so thank you. Please stay in touch. Mahalo, Kendra
  • mattg
    mattg Member Posts: 3
    #6
    dougnatalie said:

    Can I ask you a question?
    I can't find my previous post. My 9 year old has MEN 2B. She was diagnosed with MTC last Fall and they removed her Thyroid and Para-thyroids. She is having bowel problems now, what has your experience been with this if you don't mind me asking? Right now we are trying all kids of Laxitives and Fiber supplements. Any ideas?
    Thanks for your help!

    doug
    as i am reading this i
    doug

    as i am reading this i have 15 "fiber capsules" in front of me. i take maybe 45 a day. i like to take 15 at a time. my problem has been diarhea. her's might be different. i have been taking these for a few years along with some diahrea(imodium) pills. i also get shots (sandostatin). i don't think it works and it is priced sky high. if she does have diarhrea you want to get that fixed because it is painful and you can lose water quickly becoming dihydrated and end up in the hospital.

    mtgreenw@yahoo.com is my email. as i just happened to luck on to this page.
  • mosavage
    mosavage Member Posts: 1
    #7
    mattg said:

    doug
    as i am reading this i
    doug

    as i am reading this i have 15 "fiber capsules" in front of me. i take maybe 45 a day. i like to take 15 at a time. my problem has been diarhea. her's might be different. i have been taking these for a few years along with some diahrea(imodium) pills. i also get shots (sandostatin). i don't think it works and it is priced sky high. if she does have diarhrea you want to get that fixed because it is painful and you can lose water quickly becoming dihydrated and end up in the hospital.

    mtgreenw@yahoo.com is my email. as i just happened to luck on to this page.

    trying to figure out how to get diagnosed
    Hi I have a son who I am almost positive has MEN2B they thought he had marfins at first but after genetic testing they said no. Then I started having my own problems with thyroid nodules and I put 2 and 2 together. My mom is one of 11 and 5 of her siblings are dead in their 60's and one living sister has rectal cancer. I have done a lot of research online and the geneticist also agreed it is a good possiblity. Bowl problems also plaque us, my son also has problems with tremors in his hands. I have asked the doctors about this many times and they just shrug it off, now i am convinced it is probably adrenal gland related. I am interested in how you got your diagnosis, I don't want to have to wait until we actually get cancer to convince the doctors that something serious is going on. How do you know all the areas that are affected, do you just get a full body MRI or suffer through a lot of other tests to check each area. Any advice would be welcome.
  • Nms11x
    Nms11x Member Posts: 1
    #8
    mosavage said:

    trying to figure out how to get diagnosed
    Hi I have a son who I am almost positive has MEN2B they thought he had marfins at first but after genetic testing they said no. Then I started having my own problems with thyroid nodules and I put 2 and 2 together. My mom is one of 11 and 5 of her siblings are dead in their 60's and one living sister has rectal cancer. I have done a lot of research online and the geneticist also agreed it is a good possiblity. Bowl problems also plaque us, my son also has problems with tremors in his hands. I have asked the doctors about this many times and they just shrug it off, now i am convinced it is probably adrenal gland related. I am interested in how you got your diagnosis, I don't want to have to wait until we actually get cancer to convince the doctors that something serious is going on. How do you know all the areas that are affected, do you just get a full body MRI or suffer through a lot of other tests to check each area. Any advice would be welcome.

    No not an MRI well that will
    No not an MRI -well that will find masses maybe -but the definitive diagnosis is a genetic test for the RET protooncogene, to detect the mutation it has in men2. Your story is very suspicious for men2 if they had marfans in the differential for your son you very smart to think of this, did any of those deceased relatives die of thyroid cancer, or heart failure or anything suggestive of thyroid issues? What's going on with your thyroid nodules, have they done an FNA or radioactive iodine uptake scan yet? If you do carry the RET mutation and your symptoms are as you describe that would indicate MCT developing in you and pheochromocytoma in your son. They take thyroid and parathyroid glands out before there's even a hint of cancer if someone tests pos for RET. Your thyroid needed to come out yesterday, medullary cancer of the thyroid is bad bad news go see an endocrinologist asap. Your doctor is an idiot if hes just blowing it off. If ur son has a pheo (adrenal tumor) yes it would cause tremors also an elevated heart rate, sweating (profusely), extremely high bp, etc... Does he have any of these signs?

    The diarrhea issue has to do with mucosal neuromas. Tumors in the nerves that are in your gut wall to control contractiity of the smooth muscle. Mucosal neuromas also can appear as bumps on the lips and tongue. The dysfunction in the enteric nervous system is what's causing the Gi distress I'm pretty sure unless there's something else going on like elevated calcium from parathyroid tumors or catecholamines from an adrenal tumor. Those can cause Gi distress also but I'm betting on the direct nerve damage, you'd have to find out if there's something u can take that slows ur gut motiity down more than the fiber. Best of luck with everything, nobody should have to deal with a disease like this
  • lacheln4me
    lacheln4me Member Posts: 1
    #9
    I have MEN IIB
    I was born with MEN IIB. My mother is a tumor registrar and learned all about this syndrome when she was pregnant with my sister and myself. My father had MEN 2B also but his wasn't discovered in time to save his life. I had my thyroid removed in early childhood, my right adrenal gland removed Dec 2001 and now my left adrenal gland removed on July 2 2010. I've never talked with another person with this syndrome other than my sister who had her thyroid removed and one adrenal gland removed now. Feel free to email me at lacheln4me@hotmail.com as I have the next 4-6 weeks off to recover from surgery.
  • mattg
    mattg Member Posts: 3
    #10
    mosavage said:

    trying to figure out how to get diagnosed
    Hi I have a son who I am almost positive has MEN2B they thought he had marfins at first but after genetic testing they said no. Then I started having my own problems with thyroid nodules and I put 2 and 2 together. My mom is one of 11 and 5 of her siblings are dead in their 60's and one living sister has rectal cancer. I have done a lot of research online and the geneticist also agreed it is a good possiblity. Bowl problems also plaque us, my son also has problems with tremors in his hands. I have asked the doctors about this many times and they just shrug it off, now i am convinced it is probably adrenal gland related. I am interested in how you got your diagnosis, I don't want to have to wait until we actually get cancer to convince the doctors that something serious is going on. How do you know all the areas that are affected, do you just get a full body MRI or suffer through a lot of other tests to check each area. Any advice would be welcome.

    i saw a lump in my neck and
    i saw a lump in my neck and went to the school doctor at the univeristy of kansas. he sent me to a someone for a sonogram(sp?) and they showed a lump in my neck. i then went to see and endocronologist and he did a byopsy and i believe at the time thought it was just some benign tumor in my thyroid. he removed the thyroid but during surgury i guess he saw that it wasn't exactly what he believed and had a sample sent to the mayo clinic in rochester. that's where i've been going ever since.

    once thing i can think of is get his calcitonin level checked. it should be sky high if he has men 2b, i think.
  • momo4
    momo4 Member Posts: 1
    #11
    My son has MEN 2B
    My 10 year old son was diagnosed with MEN 2B a week ago after a pathology report for a routine oral surgery revealed a mucosal neuroma. He was born with really big lips and has developed neuromas on his eyelids. He has also had chronic constipation and problems with accidental bowel movements and urination. He has made great progress on that front through a regimen of daily miralax and exlax and working with a voiding clinic at a local pediatric urologist's office. Of course we started that prior to his diagnosis. He will have a thyroidectomy with modified radical central neck dissection in the next couple of weeks. We find out tomorrow after preoperative testing whether he has any tumors other than the two on either side of his thyroid. it's so good to find others with this syndrome.
  • kendrarajan
    kendrarajan Member Posts: 17
    #12
    momo4 said:

    My son has MEN 2B
    My 10 year old son was diagnosed with MEN 2B a week ago after a pathology report for a routine oral surgery revealed a mucosal neuroma. He was born with really big lips and has developed neuromas on his eyelids. He has also had chronic constipation and problems with accidental bowel movements and urination. He has made great progress on that front through a regimen of daily miralax and exlax and working with a voiding clinic at a local pediatric urologist's office. Of course we started that prior to his diagnosis. He will have a thyroidectomy with modified radical central neck dissection in the next couple of weeks. We find out tomorrow after preoperative testing whether he has any tumors other than the two on either side of his thyroid. it's so good to find others with this syndrome.

    2 years later
    Oh wow. I'm slightly overwhelmed now. I created this post almost 2 years ago, and frankly had little hope of finding others like me. I gave up checking here after awhile, and this site just faded away. Then tonight some friends were asking about my disorder, and it got me to thinking about it. I googled 'survivors of MEN type 2B' and to my surprise my own post came up. And with it, all of you. Thank you so much for adding to this thread, and I am going to not let it fade away again. I want to let those who are still in treatment know that I had both my surgeries preformed by Dr. Bobby Baker one of the few doctors in the Kaiser system who had preformed such operations on children, and had high dose radiation treatment as an experimental/precautionary - and successful - way of killing all the leftover cells, by a radiation treatment center based out of Maui. If you would like more information, please feel free to email me at kendrarajan@yahoo.com. We all know that the more information and support we have, the easier this can be.
  • renesmecarlie153
    renesmecarlie153 Member Posts: 1
    #13
    hi i'm a mother who had a
    hi i'm a mother who had a spoused who passed away with this disorder. I have a 6 yr old daughter who have a disorder.
  • kendrarajan
    kendrarajan Member Posts: 17
    #14
    Hey so I started this thread

    Hey so I started this thread like 6 years ago, and just wanted to let you know that there are waaaay more of us out there. Like I'm talking 20-30 ppl. we have a facebook geoup, searched MEN2B and you should be able to find us. I hopw this helps anyone that might be still looking for answers. 

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