EJ is on his second cycle of Ninlaro, Revlimid and dex. The treatment has proven to be a little harder than he expected. The Revlimid in particular seems to really wear on him. He's currently taking 25 mg once a day.
I'm curious to know how many people actually take the 25 mg per day. As I read through some of the posts, 10 - 15 mg seems more common. If you are on the lower doses, how long did you stay on the 25 mg, and when / why did you go on the lower dose?
EJ would like to stay on the higher dose at least until it knocks the multiple myeloma back. But I think the fatigue is really affecting his quality of life.
Anything you can share would be very helpful!
Lyn
Forums
8 posts
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Revlimid dose
Hi Christa's Mom,
Sorry to hear that 25 mg of Revlimid is causing your husband so much fatigue.
I was on 25 mg Revlimid for about ten weeks and then had the dose reduced to 15 mg a little over a year ago after my M-spike fell from 6.5 g/dl to under 1 g/dl. My only significant problem on the higher dose was occasional muscle spasms. I've not had them, or any other side effects, from the lower dose.
Sorry to hear that 25 mg of Revlimid is causing your husband so much fatigue.
I was on 25 mg Revlimid for about ten weeks and then had the dose reduced to 15 mg a little over a year ago after my M-spike fell from 6.5 g/dl to under 1 g/dl. My only significant problem on the higher dose was occasional muscle spasms. I've not had them, or any other side effects, from the lower dose.
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Ted Kan - Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 75
Re: Revlimid dose
I'm on my 4th cycle of induction therapy with Revlimid, Velcade, and dexamethasone, and take 25 mg Revlimid daily, two weeks on and one week off.
Although my numbers came into line after my first cycle, my myeloma specialist wants me to complete 8 cycles, though did reduce my dex to 20 mg from 40 mg. I'm tolerating Revlimid fairly well except for gastro issues, which come and go. Fatigue is moderate.
Although my numbers came into line after my first cycle, my myeloma specialist wants me to complete 8 cycles, though did reduce my dex to 20 mg from 40 mg. I'm tolerating Revlimid fairly well except for gastro issues, which come and go. Fatigue is moderate.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Revlimid dose
Lyn,
I would just add that, for me, the fatigue actually has passed, and now the Revlimid causes a bit of agitation, so I went from taking it before bed to taking it in the morning.
I was diagnosed March 2014 and just started cycle eleven of 10 mg maintenance.
Best! BN
I would just add that, for me, the fatigue actually has passed, and now the Revlimid causes a bit of agitation, so I went from taking it before bed to taking it in the morning.
I was diagnosed March 2014 and just started cycle eleven of 10 mg maintenance.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Revlimid dose
My husband started out in a clinical trial and the Revlimid dose was 25 mg, but he got a blood clot, so they brought him down to 10 mg. Then he went down to 5 mg since he was stable. He currently remains on 5 mg.
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Revlimid dose
Prior to my stem cell transplant in August 2015, I was on 25 mg Revlimid (two weeks on, one week off ) for 6 cycles with Velcade and dex. Since the stem cell transplant, I have been on 10 mg Revlimid maintenance, daily. However, due to frequent severe muscle cramps, I am now on 21 days, off 7, same dosage.
Re: Revlimid dose
Thank you all so much for your replies. I really appreciate it.
Lyn
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Revlimid dose
I had same fatigue on the 25 mg dose, but not much. What really helped was forcing myself to get out and walk no matter how tired I was - I always felt better after I did. The worst side effect was constipation.
If EJ can continue on the 25 mg, it usually really works to drive the myeloma down.
If EJ can continue on the 25 mg, it usually really works to drive the myeloma down.
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Janet1520
8 posts
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