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

Maintenance therapy post sct

by mso on Fri Jan 25, 2013 12:35 pm

I just started Revlimid maintenance therapy 15mg daily. What dosage and schedule are you on? Anyone experiencing side effects?

mso
Name: Mic
Who do you know with myeloma?: self
When were you/they diagnosed?: Sept 2010
Age at diagnosis: 53

Re: Maintenance therapy post sct

by coop223 on Fri Jan 25, 2013 3:27 pm

I'm on 10mg Revlimid maintenance. Only problems I've encounter are GI tract, tired at times and can't sleep sometimes although I'm tired. Nothing major and they get less severe after time. I've been on the maintenance for 7 months.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Maintenance therapy post sct

by coop223 on Fri Jan 25, 2013 3:28 pm

PS. Three weeks on, one week off.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Maintenance therapy post sct

by Guitarnut on Fri Jan 25, 2013 7:25 pm

Hi Coop!

Those are the exact same side effects I have with the added discomfort of cramping in my feet.. So far I haven't found anything to help with the cramping. The being tired and not being able to sleep drives me crazy!! :x

Scott

Guitarnut
Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47

Re: Maintenance therapy post sct

by tpt on Sat Jan 26, 2013 6:08 am

My dad is about to go for asct this coming feb. Doctor said his maintenance theray would be low dose Velcade twice a month. Doc said his trait of p53del makes Velcade a superior choice than Revlimid. I also read in many articles that rev only delays the progression, but not the overall survival of the patient.

Anybody opted or recommended for Velcade maintenance instead of rev maintenance? What are your typical dosage? Cheers

tpt

Re: Maintenance therapy post sct

by Russ on Mon Jan 28, 2013 11:55 am

For what it's worth, I am on a maintenance regime of Revlimid and Velcade due to some adverse cytogenic factors. Revlimid 2on/1off at 5mg, and Velcade 1.3mg/m2 every other week. (Rev was originally at 10mg, but my white counts were being somewhat obstinate, and my doc and I are not in any hurry to raise the dosage back.) No Dex - I am happy that I won consent to drop that.

I have been blessed with only "nuisance" side-effects - Typical gastro-related issues a couple of days after Velcade (which don't last more than a day or so for me), and random cramping in the calves near the end of my Rev cycle. That being said, the impact of chemo on a person varies with the individual, just like this disease, and it is important to let your doc know what you are feeling in case a dose modification is necessary.

Be well, everyone!

Russ

Russ
Name: Russ
Who do you know with myeloma?: Me, Myself, & I (and a few others)
When were you/they diagnosed?: February 2011
Age at diagnosis: 41

Re: Maintenance therapy post sct

by tpt on Mon Jan 28, 2013 6:34 pm

Isn't 1.3 mg/m2 of Velcade a normal, induction dose? Your doctor does not give you a lower dose for maintenance?

tpt

Re: Maintenance therapy post sct

by Eric Hofacket on Tue Jan 29, 2013 2:55 am

I have been on 10mg for three weeks and one week off for about a year. I can see in my CBC the effects of Revlimid but I cannot say that day to day I feel any side effects that I can attribute directly to Revlimid with normal activity. I feel tired at times but then since I have had myeloma over the last two years I have felt tired a lot when on and off Revlimid. When my hemoglobin and RBC are low I can feel the effect when I exercise. I also get sick more easily because of low WBC. I see that a lot of people have cramps but I cannot say I have had any I can attribute to Revlimid. The last time I had a leg cramp was this last summer after cycling 86 miles and that ride ended in 104 degree heat and I was dehydrated. I can’t blame that on Revlimid. I think overall I an tolerating Revlimid really well so far.

Eric Hofacket
Name: Eric H
When were you/they diagnosed?: 01 April 2011
Age at diagnosis: 44

Re: Maintenance therapy post sct

by Russ on Tue Jan 29, 2013 10:25 am

tpt,

I have seen dosages for folks ranging between 1.0 and 1.5mg/m2, but 1.3 is the recommended starting dose absent any physical issues with the patient. Also bear in mind that dosage frequency also plays a part. When I had my induction almost two years ago (has it been that long now?), it was twice weekly at 1.3mg/m2. Currently I think many docs have moved to once weekly for induction given studies showing similar efficacy but reduced pn concerns. So every other week, in my case, is quite a step down from where I started.

There is a lot more art to the practice of medicine than we realize, I think, and it is a matter of balancing potentially effective treatment against potential toxicities in the hopes of keeping this beast at bay.

I wish your father the best for his upcoming transplant.

Regards,

Russ

Russ
Name: Russ
Who do you know with myeloma?: Me, Myself, & I (and a few others)
When were you/they diagnosed?: February 2011
Age at diagnosis: 41


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