Monoclonal Gammopathy

Almost 3 years ago, my neurologist did blood work and found that I had protein in my blood. My protein is still low enough that they have said I have monoclonal gammopathy. I go to the oncologist every 3 to 4 mos. for blood work.The doctor tells me that I am at risk for developing multiple myeloma. If anyone that reads these message boards started out like I have and now has been diagnosed with MM, would you tell me about your situation. Sometimes I feel like I'm sitting on a time bomb!!! I also have neuropathy. Thank you

Beverly,
I was diagnosed with MM 3 years ago. I am 53 yrs old. I am sure I had protein in my blood long before I was diagnoised but they were more concerned with my multiple sclerosis and It was never addressed. I know the aspects of getting MM are tramatic but they have made remarkable progress in treatments. I was given 6 months because I have resistant Multiple Myeloma and believe me when I tell you that nothing worked. Until that is a year or so ago the FDA approved Velcade. I am 8 months and counting in complete remission with only one treatment of this wonderful new drug. I am feeling better than I have felt in 10 years. I live in Florida now and am enjoying every day as a retired RN and loving it. If you want to talk you can I am here for ya. Best Wishes, Darlene

Darlene,
Thank you so much for your message!!! I have read a lot about the new drug Velcade. It sounds
like you have been through so much!! But you are
willing to help other people. What a sweetheart.
I would like to wish you the best.You deserve it!
I would like to keep in touch with you. Let me know how you are doing from time to time. And I will do the same.
Once again Darlene,thank you.
Beverly

Dear Beverly: My husband had that also and we just went to our local doctor and oncologist. But, he was feeling better and he had neuropathy. My husband's first diagnosis was Amyloidosis and then what you have and in less than a year Multiple Myeloma.
I would go to a center or specialist and also check to see if have the Amyloidosis. It is very very rare. My husband had carpal tunnel surgery on both hands and it did not improve his condition. There is a site that is great for it: AmyloidosisNetwork. I would also get a an opinion from Mayo, Boston, or Sloan in N.Y. My husband's condition is stable at this time. We go to Emory, but I would in hind site have gone to the top three for both conditions are rare.
Colleen L.

Dear Coleen, Thank you so much for your message. I have seriously considered Boston. They have a real good reputation. It sounds like your husband and I have the same situation. How is he doing now? It's so nice to be able to talk to other people that have all this stuff. What a scary thing. How are you doing with everything? My husband doesn't like to talk about it too much. I think he has the idea that if we don't discuss it, it will just go away. I guess it's the way he gets through it. Well Colleen, let me know how you guys are doing. And I'll let you know what's going on here. Thank you so much. I will be looking forward to talking to you again.

Beverly

Stating the obvious here - Just make sure you are getting X-ray's or MRI's regularly to look for bone lesions. I am rare in that I found a bone lesion before anyone ever looked for protein. They got it with raditiaton as it appeared to be solitary. If you can find those early, they can be taken care of with radiation and avoid chemo.

I was found to have a spike in my protein 2 years ago. I just had blood taken last month and it had increased. It is pretty scary to know that you have a 25% chance of developing Multiple Myeloma which is fatal with no cure. I know how you feel about sitting on a time bomb. The good news is there is a 75% that we won't get it.

For those of you who have neuropathy, what are the symptoms?. I have had problems with a burning sensation in my 4th toe of my right foot, followed by incredible pain. These incidents can come on at anytime and can last from minutes to an hour. Is this associated with MGOS? Thanks

Dear Kevin: Please get more tests, and go to an active center such as Boston, Sloan-Kettering, or Mayo.
Your nerves in your foot can be experiencing neuropathy. Also, specific nerves can just feel discomfort.
My spouse has Amyloidosis and was checked and found to have MGUS. Within six months I took him to Emory were the MGUS turned into an early case of Multiple Myeloma.
His condition is stable now. He used high dose steroids(dex) and thalidomide for his oral chemo. He now only takes the thalidomide. When his counts go up, he will then start a more aggessive chemo.
Check out the Amyloidosis Network site on the net, also check with the Lymphoma Society. Under their umbrella of care they cover, myeloma and amyloidosis. Get the best treatment, and keep yourself healthy.
With regards,
Colleen

Hi everyone,

The best forums for MGUS patients that I have found are the discussion groups at choosehope.com. I have attempted to draw together a number of web links that pertain to polyneuropathy, POEMS syndrome, and amyloidosis as they pertain to MGUS, and have posted them on a new "MGUS - helpful links" thread on that site. It is at http://www.choosehope.com/forum/read.php?f=1&i=1997&t=1997

The other MGUS threads there are also very interesting. There are hundreds of posts there, and about 45% of the patients are describing symptoms of polyneuropathy.

I am sorry, but in my opinion the doctor who did carpal tunnel surgery on an MGUS patient, was an uninformed idiot!

Hallie