Multiple Myeloma Member Introductions

#21

55 m had mm 3 yrs had 2 stem cell transplants t mgh boston. take 50 grms thalidomide per day doin well though i have many bone problems from mm

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#22

I have Multiple Myeloma. Tomorrow is my one year anniversary of my second stem cell (auto) transplant.
I want to hear from other courageous people battling this cancer.

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#23

I am a caregiver for my father who has IIIb MM.

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#24

I am 46, and was diagnosed with Multiple Myeloma 7 years ago. It was smoldering for 6 years, but became active last fall. So my doctor started me on Revlimid, which I’ve been taking for 8 months. I am wondering if perhaps I should stop taking Revlimid, despite my doctor’s insistence that I should continue to take it for a few months after it stops reducing from Kappa light chain, increasing the amount of Revlimid as well. I learned from a “Dr. Durie Webcast”, that it may not always be wise to do “chemotherapy maintenance” between stem cell transplants, since it may reduce effectiveness of future use of it. This could mean that I should not “over use” Revelimid now, though I’ve yet to have a stem cell transplant (which is our plan if the light kappa chain rises again after stopping). I plan on getting a second opinion from another doctor, although I’m wondering if anyone else out there has had their doctor insist on the same thing. Also, does anyone have a doctor in Boston they recommend for a second opinion? Any help would greatly appreciated. Also, if I anyone thinks I may be able to help them with any info on anything such as Revlimid, I’d be happy to try.

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#25

My name is mrtrouble. I’ve been dianosed with Smoldering Myeloma in Sept 2005. Today I was notified I now have multiple myeloma stage 1. I have severe leg cramps late at night while sleeping. They do not do much for the sleeping part. They become very intense. I also have become sleepy throughout my day hours at my job. I wake up in the morning, feel like I could sleep all day.

Would enjoy hearing from anyone in this same situation. Please tell my how the chemo, radiation went, and what were the results.

GOD’S Blessings to all of you.

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#26

I have MGUS which can turn into MM

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#27

I am relapsing after several years of remission (autologous stem cell transplant in 2002) I guess I am lucky I got so many years. I do have to say I am not too happy with the news. On thalidomide again and the neuropathy is a drag. Tired all the time. At the moment I am on the East Coast far away from family and friends. I didn’t join any sort of support group before but am wondering if maybe it would be helpful. Anyone here have any tips?

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#28

I was diagnosed with MM in May 2005, have had stem cell transplants & am in complete remission. I like to learn all I can about the disease.

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#29

Hi All,
Thank you for the help in advance. My Father, 83, has had Multiple Myeloma for 3 1/2 years. He was taken off Thalomid in January 2007 and put on Revlimid, now, June 2007, Revlimid appears to not be working and the doctor is taking him off that. His IgA count is 1900, it went as high as 2600, but is now steady at 1900 and not dropping.

He had a Bone Marrow Biopsy last week and the results are 70% Plasma Cells. The Doctor has now ordered a 2 Unit Blood Transfusion to help with his anemia.

I have searched for days but cannot find information on what the prognosis for longevity may be given the above information? Any help is greatly appreciated.
Kind Regards

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#30

I am a friend of jojess4 and want to support her in this community and learn more about multiple myeloma.
Jojess4 is a very special person in my life. She is courageous, considerate and and quite a lady. I am not sure how to use this site but will learn.

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#31

a VERY dear friend of mine is fighting against mulitple myeloma

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#32

My Dad has just recently been diagnosed with this, I wanted to learn more to help him in anyway that I can.

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#33

My mom was just diagnosed about 2 weeks ago. We really don’t know what to expect. She recently started on Thalidomide and steroids, but is experiencing joint and bone pain. Is this normal for multiple myeloma?

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#34

my spouse has MM and is currently in remission and on a 12 month maintenance regimen. What can you tell me about dex psychosis and the impact of this drug and velcade or thalomid on mood and mindset?

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#35

My brother was diagnois with MM3, last fall…he was set up for stem cell transplant and had different things with health come up, as of 03/07 his transplant came thru. The Doctor now wants him to have the 2nd transplant, he says No. I just want to understand ! I know it is his choice, but I want to help him thru it all.

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#36

My husband was diagnosed with MM three years ago.

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#37

Just diagnosed and looking for more information.

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#38

My fiance is facing a possible Multiple Myeloma diagnosis. I’m trying to find out more about it.

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#39

I am in the process of ruling out/in this diagnosis.

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pinned #41
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