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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Revlimid/Velcade/dexamethasone

by nadia33 on Thu May 19, 2011 2:48 pm

Has anyone started induction period of 3 months on these Revlimid, velcate and dex to follow with a transplant ? This is what the doctor is suggesting for a new diagnosed stage one with 40% plasma cell in bone marrow biopsy. Also what are the most common side effect u r experiencing w these three drug combs ? Also if u r in nyc area, what do u think of Sloan kittering cancer center for myeloma. Thank u. Let me know if u have better suggestions. Thanks.
Nadia

nadia33

Re: Revlimid/Velcade/dexamethasone

by rumnting on Thu May 19, 2011 6:36 pm

That regimen was just prescribed for my huband at the Mayo Clinic. He will start treatment next week at our local cancer center and a stem cell transplant is planned for September, back at Mayo. He is 54, stage II, high risk.

rumnting
Who do you know with myeloma?: husband
When were you/they diagnosed?: 4/9/11
Age at diagnosis: 54

Re: Revlimid/Velcade/dexamethasone

by nadia33 on Thu May 19, 2011 8:49 pm

My sister had a lesion in her lumber spine which led to this diagnosis. She will start treatment next week as well. The doctor never said anything about the risk ... Is that based on the chromosome testing? Is that done on all patients? Good luck and keep me updated how your husband is doing.
Thanks.

nadia33

Re: Revlimid/Velcade/dexamethasone

by rumnting on Fri May 20, 2011 5:54 pm

I am still just learning, but the chromosome studies are one of the things that can be the basis for being labeled "high risk". My husband has a 17p53 deletion.

rumnting
Who do you know with myeloma?: husband
When were you/they diagnosed?: 4/9/11
Age at diagnosis: 54

Re: Revlimid/Velcade/dexamethasone

by mowgli18 on Sat May 21, 2011 9:09 pm

I am doing Revlimid/dex/Velcade for 4-6 cycles and then hopefully transplant. Since I have multiple bone lesions on my spine/chest wall and I think the doc said 85% myeloma in my bone marrow (not sure if this is how I should say this) I guess I would be a stage III. She only put me on 10 mg of Revlimid because my kidney function was only about 50%. I also went from 2 x per week on Velcade (IV) to once per week because I was experiencing some neuropathy (nothing I couldn't deal with although the doc seemed more concerned than I was). Oh yeah, zometa was also added every six weeks for the bones.

That being said I've done really well with the treatment -- very few side effects -- the biggest being a little sleeplessness when I take the dose of dex (40 mg once a week). I take a sleep aid then. Also I am tired with the Revlimid because basically it is like thalidomide which was a tranquilizer/sedative in its day. Taking it before bed should help sleeplessness and may be not as bad. I've had to get used to walking around (and working full time) in remote control. Not much nausea at all. The Velcade did make me feel like someone pored lead in my veins (weird like that) when I first had it. I haven't noticed it much since then.

I have been battling anemia and have had to have two transfusions to get the counts up. But I really feel okay. Good luck on yours. :)

mowgli18
Name: Mowgli18
Who do you know with myeloma?: myself
When were you/they diagnosed?: March 2011
Age at diagnosis: 51

Re: Revlimid/Velcade/dexamethasone

by nadia33 on Sat May 21, 2011 9:36 pm

Thank you so much everyone for your input and sharing your experience. My sister will start this on Monday and I'm anxious/ nervous to see what kind of side effect it will have on her. Hopefully not too much.

nadia33

Re: Revlimid/Velcade/dexamethasone

by Matt on Mon May 23, 2011 2:02 pm

I was diagnosed in April 2009 and underwent three cycles of Rev/Velcade/Dex. I had over 90% myeloma cells in my bone marrow and six compression fractures. I had a complete response -- no residiual myeloma cells in my bone marrow -- after three cycles of the Rev/Vel/Dex. I still had the stem cell transplant.

Rev/Vel/Dex combination has gotten the best results over all, achieving at least a partial response in something like 90% or better. I also read that something like 70 % of newly diagnosed patients achieve a near complete response or better.

I am in the NYC area but do not know much about Sloan Kettering. I went to Hackensack University Medical Center for my transplant. But SK has a very good reputation. It sounds like her doctors are giving her the course of treatment which according to clinical trials is the most effective.

Matt
Name: Matt Linden
Who do you know with myeloma?: Myself
When were you/they diagnosed?: April 2009
Age at diagnosis: 44

Re: Revlimid/Velcade/dexamethasone

by nadia33 on Mon May 23, 2011 11:43 pm

Thank you Matt for your response. Glad it worked for you. She started treatment today and her blood glucose went up to 300. The doctors said it was expected from dex but has to keep it monitored. Did u experience any crazy side effects?

nadia33

Re: Revlimid/Velcade/dexamethasone

by Matt on Tue May 24, 2011 6:18 pm

My side effects were mild. Mostly diahrea and fatigue. I didn't even lose my hair. (I did later when I went for the stem cell transplant.)

Matt
Name: Matt Linden
Who do you know with myeloma?: Myself
When were you/they diagnosed?: April 2009
Age at diagnosis: 44

Re: Revlimid/Velcade/dexamethasone

by nadia33 on Wed May 25, 2011 4:55 am

Hi Matt
So even if you get compelete remission w drugs, they still go ahead with transplant? That's what seems like what is planned for my sister. also, seems like some other docs prefer the wait and watch method when it come to transplant ( not my sisters doctor. Her doc is all the way pro early transplant) What was your doctors view on this?also how was your transplant experience? I have heard some scary stories and some not so scary...
Do u mind sharing who ur doct was? Thank you.

nadia33

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