I have a disease called multiple endocrine neoplasia 1 (MEN-1)

Posted by haetherann @haetherann, Oct 1, 2011

I have a disease called multiple endocrine neoplasia 1 and I have recently received some upsetting news. I don’t know anyone else who has gone through or is going through tough health issues. I have gotten three pretty major diagnoses in two weeks all stemming from this disease andvi am having a terrible time dealing with it. Im terrified and sad and angry and I feel like noone around me can relate. I desperately need someone who understands.

Interested in more discussions like this? Go to the Diabetes & Endocrine System group.

Sorry to hear about your situation haetherann, what is the plan you and your Dr have to respond to this information.

REPLY

I have men-1 and have had 9 operations . Doctors at university of Pennsylvania are very knowledgeable and have seen many cases.

REPLY

Hi, I do not have this, at least if I do they have not gotten around to laying that one on me yet. I am not making light of your situation at all, just trying to cheer you up and let you know that while I do not understand your physical pain I do understand the mental anguish of being cruelly and suddenly told that you are seriously ill and how devastating that is, “Where have all the doctor’s gone?”. I went in for a sinus infection and terrible sinus headache and nausea, and left with that as well as pnuemonia and MAC. I had not planned on doing any additional shopping for illness at the urgent care. I don’t know if you know what any of those are, but they are serious. I understand not knowing who to talk to or what to say, I have pretty much been hiding, and I cry if you are mean in the least, and also if you are nice to me. I say I’m sorry every ten seconds to someone it seems because I feel like I can’t do what others depend on me for, i can’t concentrate, I can barely even breathe,. It just goes on, but I found a good place here on this forum, and someone I can talk to who listens to me and understands, and I don’t fear who they will tell, or what they will think, I am not ready for the general peeps, they can think I have some mild little pnuemonia for now, until I am ready. But when the world is just about to explode, someone here will reach out to you at just the right time and say exactly the right thing. God bless. Have you a dog? He has understood and gives me so much compassion and appreciates it so much even when what I can do is diminshed, if you have a pet they will know, if you don’t maybe you can borrow one from a friend for a few hours or ask for a care-giver dog to visit, unless of course if your medical condition will not permit being around animals. I have started doing little things that the crushing news took away, maybe something silly would help, I have been too sick to care about makeup, a friend took me to get all new makeup today, I was too tired I let her choose everything, and you know what it was exhausting, but I did actually put it on, and I did feel better, more like old me, and today I bought a beautiful red oriental wine bag cover, the kind that has a drawstring handle, to keep the ever increasing bottles of pills, sprays, etc…. I like it much better than a zillion plastic bags from the pharmacy…just make a little lemon-ade whenever you think it might make you smile even if for only a second. I hope you find a friend with your condition really soon….and also become your own best friend. And….get a really peaceful sleep with very beautiful dreams.

REPLY

I noticed that the original post was from 2011. I wonder how she is doing now? @ijustdontbreathewell, you have such a great attitude about your difficult situation. I know that my kitties seem to know when I am in great pain in my back. My grandson actually noticed first that the kitty who loves me best, jumps up on different pieces of furniture so I can pet him without having to bend over. When I’m feeling better he doesn’t do that unless I indicate that I want him up within reach. Animals are so loving and sweet that its easy to understand how they can help people feel better. Thanks for your post @ijustdontbreathewell. Gail B

REPLY
@kbfan19

I have men-1 and have had 9 operations . Doctors at university of Pennsylvania are very knowledgeable and have seen many cases.

Jump to this post

Hi @kbfan19 and welcome to Connect.
Thank you for re-igniting this discussion. I’d like to bring a few other members into this discussion. Please meet @jmbjar, @jamimen1 and @hopeful33250.

Kbfan, we look forward to getting to know more about you. What other treatment or management do you use besides surgery or are the tumors managed by surgery only? Have you had genetic testing?

REPLY
@kbfan19

I have men-1 and have had 9 operations . Doctors at university of Pennsylvania are very knowledgeable and have seen many cases.

Jump to this post

Hi colleenyoung. Thanks for the welcome. I’m currently taking chemotherapy for liver and pancreatic cancer. What are some of the therapys others are using? There are some chat groups for men1 patients.

REPLY
@kbfan19

I have men-1 and have had 9 operations . Doctors at university of Pennsylvania are very knowledgeable and have seen many cases.

Jump to this post

I am also MEN 1, I am currently on a chemo regimin for Pancreatic Ppomas. At this time the plan is to attempt to shrink some of the tumors to make removal of the pancreas easier. I also have a monthly lanreotide injection.

REPLY
@kbfan19

I have men-1 and have had 9 operations . Doctors at university of Pennsylvania are very knowledgeable and have seen many cases.

Jump to this post

@kbfan19 and @jamimen1–I didn’t understand at first that “men-1” was related to pancreatic cancer and other pancreas problems. My mother died from pancreatic cancer in 1993, and I have been concerned about the possibility that I may get it at some point. She had T2 diabetes, as do I, and I now have possible cysts on my right kidney that showed up on an MRI of my lumbar spine. I’m seeing my Internist about this tomorrow. I would like to understand more about how long you have had your pancreatic issues, how you knew you had a problem, and what your outlooks are if you don’t mind sharing the information. I will very much appreciate your help with my understanding. I’m sorry you are both dealing with these painful problems an I hope the best for you. Gail B

REPLY

Hello @kbfan19, I am sorry to hear of your surgeries. I have had 3 surgeries for neuroendocrine tumors and I understand (to some extent) your concerns.So far, my only treatment has been the surgery. I am also following up with pancreatic cysts but so far that looks OK. I am glad to hear that you have a team of experienced doctors who are working with you. That really does make a difference, doesn’t it? Please keep in touch and let us know how you are doing. Teresa

REPLY
@hopeful33250

Hello @kbfan19, I am sorry to hear of your surgeries. I have had 3 surgeries for neuroendocrine tumors and I understand (to some extent) your concerns.So far, my only treatment has been the surgery. I am also following up with pancreatic cysts but so far that looks OK. I am glad to hear that you have a team of experienced doctors who are working with you. That really does make a difference, doesn’t it? Please keep in touch and let us know how you are doing. Teresa

Jump to this post

Hi Teresa, my doctors are great. They call me at home just to follow up.How long have you had treatment? Thanks for saying hi. Frank

REPLY

I was diagnosed with MEN 1 just over a year ago and I’ve just recently turned 23. Been getting scans done every few months and check ups. But in the last few months my mood has been like a rollarcoaster, up and down. Just wondering if anyone has experienced mood swings (feelings of sadness and irritation) and these feelings aren’t even triggered by anything like a bad memory or anything like that, the only way I can describe it as is a light switch, literally. One minute I’m calm, happy and then I feel like the weight of the world is on my shoulders. If anyone can give feedback on similar symptoms that I feel personally are related to MEN 1 please do reply.

REPLY
Please sign in or register to post a reply.
  Request Appointment