I'm looking for multiple myeloma patients with similar symptoms to my own. I was diagnosed Feb '09 at age 51, good physical condition. My symptoms were breathlessness after running up stairs (I thought I had a cardio problem) and fatigue. Diagnosis was eventually multiple myeloma.
Test results showed no elevated calcium, no lesions or bone involvement. No monoclonal peak in 24 hour urine.
IgG kappa monoclonal spike: 4.7 g/dl
Total IgG level: 6841 mg
Serum creatine: 1.3, calcium: 8.4, albumin: 2.6
Total serum protein: 10.7
beta-2 microglobulin: 3.76
free light chain: kappa 58.9mg/dl; k/l ratio 34.6
Bone marrow biopsy: about 60% cellular with 60% plasma cells
24 hour urine: no quantifiable
I had 3.5 cycles of Revlimid Velcade decadron (stopped because of neurapathy) and gained a complete response. Recently, my light chain numbers have begun to climb and I am considering options for further treatment. I'd like to compare notes with patients of similar disease profiles.
Forums
5 posts
• Page 1 of 1
Looking for multiple myeloma patients with similar disease profile
Last edited by BobinMO on Sun Jan 02, 2011 11:43 pm, edited 1 time in total.
-
BobinMO - Name: BobinMO
- When were you/they diagnosed?: Feb 2008
- Age at diagnosis: 51
Re: Looking for multiple myeloma patients with similar disease p
Please share your cytogenetic report. Did you undergo a stem cell transplant? Maintenance?
-
Perseverance - When were you/they diagnosed?: 2010
Re: Looking for multiple myeloma patients with similar disease p
Sorry for the time lapse, I've been on (vacation)--driving/skiing/chaperoning my church youth group to CO.
First, I must correct a typo in the original post: I was diagnosed in Feb '09---not '08.
My cytogenetic reports (at diagnosis and after chemo) : Normal Male Karyotype; 46,XY(20)
I took no maintenance drugs and decided to 'wait and see'. I'm contemplating sct and wanting to compare treatment protocols and results of other patients with my disease profile.
First, I must correct a typo in the original post: I was diagnosed in Feb '09---not '08.
My cytogenetic reports (at diagnosis and after chemo) : Normal Male Karyotype; 46,XY(20)
I took no maintenance drugs and decided to 'wait and see'. I'm contemplating sct and wanting to compare treatment protocols and results of other patients with my disease profile.
-
BobinMO - Name: BobinMO
- When were you/they diagnosed?: Feb 2008
- Age at diagnosis: 51
Re: Looking for multiple myeloma patients with similar disease p
Hi Bob.
I am writing for my partner Jim who has multiple myeloma and has a similar profile to yours. He is 67 and was diagnosed with multiple myeloma May 2010 after feeling exhausted and experiencing weight loss from severe anemia. He, like you had no bone problems. They gave him a blood transfusion which made him feel much better and started treatment with Velcade, Dex, and Revlimid. After 2 rounds, the Velcade caused hypo tension (drops in blood pressure upon standing) which caused near fainting. By the time doctors realized what was causing the hypo tension, he had already had a 3rd cycle. And, this is when the neuropathy set in. After 5 months, it seems finally to be on its way out. Meanwhile, after one more cycle of just Revlimid, he is in complete remission. They stopped the Revlimid last month to see if it might be contributing to the neuropathy which was likely caused by Velcade. Of course, we'll never know for sure since it could just be going away on its own--it is supposed to be reversible when brought on by a toxin such as Velcade. He has used lidocain patches with some success. He tried small doses of neurontin early on, but he didn't seem to tolerate it well.
Jim did not have a stem cell transplant and is currently drug free. They say his complete remission is unusual. He would have continued on just the Revlimid if it had not been for the neuropathy--which is in his feet.
Any how, hope this info was helpful. Good luck to you in your treatment and please feel free to write with any questions etc.
Best, Geri
I am writing for my partner Jim who has multiple myeloma and has a similar profile to yours. He is 67 and was diagnosed with multiple myeloma May 2010 after feeling exhausted and experiencing weight loss from severe anemia. He, like you had no bone problems. They gave him a blood transfusion which made him feel much better and started treatment with Velcade, Dex, and Revlimid. After 2 rounds, the Velcade caused hypo tension (drops in blood pressure upon standing) which caused near fainting. By the time doctors realized what was causing the hypo tension, he had already had a 3rd cycle. And, this is when the neuropathy set in. After 5 months, it seems finally to be on its way out. Meanwhile, after one more cycle of just Revlimid, he is in complete remission. They stopped the Revlimid last month to see if it might be contributing to the neuropathy which was likely caused by Velcade. Of course, we'll never know for sure since it could just be going away on its own--it is supposed to be reversible when brought on by a toxin such as Velcade. He has used lidocain patches with some success. He tried small doses of neurontin early on, but he didn't seem to tolerate it well.
Jim did not have a stem cell transplant and is currently drug free. They say his complete remission is unusual. He would have continued on just the Revlimid if it had not been for the neuropathy--which is in his feet.
Any how, hope this info was helpful. Good luck to you in your treatment and please feel free to write with any questions etc.
Best, Geri
-
gguardino@firstnight.org
Re: Looking for multiple myeloma patients with similar disease p
I'm 49 y/o female. DX in 2004. SCT in 2005. Although close in age, treatment protocol has changed tremendously since my DX. Am in remission w/no meds. HOWEVER, before I was diagnosed, I went into complete renal failure and have permanent kidney damage. Also heart damage along with amylodisis. I, too, am trying to locate someone with similiar details. I wish you well.
-
JustSaySo - Name: JustSaySo
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct. 2004
5 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories