All, I've been on a 10 mg daily Revlimid maintenance treatment since my autologous stem cell transplant (ASCT). I had a very good partial response (VGPR) and have been told I'll be on this dosage until relapse or I can no longer tolerate it. Herein lies the question.
For the last 3 months, I've had on again / off again diarrhea. I mentioned this to my local oncologist who first recommended Imodium (loperamide). I hate the effects of the constipation it brings due to my 10 cemented vertebrae in my lower back. My last visit, I mentioned it again and he recommended a colonoscopy. I said that perhaps it was caused by my daily Revlimid, to which he said: No, that causes constipation.
I'm being overseen in treatment by a multiple myeloma specialist and asked if my monthly visits are being shared, which he ensured me they were. My platelets have fallen from 225 to 177 and my WBC are consistently low.
Am I tolerating the daily Revlimid dosage?
Kully
Forums
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: What defines tolerance during Revlimid maintenance?
Hi Kully,
I'm been on Revlimid maintenance for almost 2 years. Started on 10 mg and now it's up & down between 10 & 5 mg,
Sometimes I had diarrhea and sometimes I had constipation. I didn't take anything for diarrhea because I know I will get constipation later on. I use stool softener and Miralax on a regular basis.
As for platelets, mine barely went up to 80. That's because I was off the Revlimid for 8 weeks. It's usually around the 50s or 60s. My ANC is around 1.4 or lower.
Good luck
Kaew
I'm been on Revlimid maintenance for almost 2 years. Started on 10 mg and now it's up & down between 10 & 5 mg,
Sometimes I had diarrhea and sometimes I had constipation. I didn't take anything for diarrhea because I know I will get constipation later on. I use stool softener and Miralax on a regular basis.
As for platelets, mine barely went up to 80. That's because I was off the Revlimid for 8 weeks. It's usually around the 50s or 60s. My ANC is around 1.4 or lower.
Good luck
Kaew
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Kaew
Re: What defines tolerance during Revlimid maintenance?
Kully,
This news article from last October may be helpful to you:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 10, 2014
Mikeb from here in the forum has tried one of the types of medications recommended for Revlimid-related diarrhea in the above article, but it hasn't worked so well for him. Others have had better experiences. See this forum thread, which discusses Mikeb's experience.
"Welchol (colesevelam) - any experiences with it?", forum disc started Dec 4, 2014.
You can find a list of most of the discussions related to GI issues here in the forum by going to this link. Many of them have useful tips and, as you'll see, your experience isn't unusual.
In general, you can quickly find previous discussions about specific drugs, drug regimens, and many different side effects by clicking on the links in the "Useful links to existing forum discussions" posting, which appears at the top of the Treatments and Side Effects part of the forum.
This news article from last October may be helpful to you:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 10, 2014
Mikeb from here in the forum has tried one of the types of medications recommended for Revlimid-related diarrhea in the above article, but it hasn't worked so well for him. Others have had better experiences. See this forum thread, which discusses Mikeb's experience.
"Welchol (colesevelam) - any experiences with it?", forum disc started Dec 4, 2014.
You can find a list of most of the discussions related to GI issues here in the forum by going to this link. Many of them have useful tips and, as you'll see, your experience isn't unusual.
In general, you can quickly find previous discussions about specific drugs, drug regimens, and many different side effects by clicking on the links in the "Useful links to existing forum discussions" posting, which appears at the top of the Treatments and Side Effects part of the forum.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: What defines tolerance during Revlimid maintenance?
Thanks for the link! I knew I was not alone with this issue.
Kully
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: What defines tolerance during Revlimid maintenance?
Hi Kully,
Sorry to be a little late to comment on this thread; I've been out of town.
And thanks, Boris, to pointing Kully to the Welchol thread I started.
I think the main thing is that diarrhea is, in fact, a pretty common side effect with Revlimid maintenance. So you are not alone at all, Kully. I've been on Revlimid maintenance at 10 or 15 mg, depending on how things are going, for 17 months now. During the first 6-8 months of that time, I was like Kaew, bouncing between diarrhea and constipation. But, since then, I've been more like you, with off-and-on diarrhea (more on than off, I guess). After the Welchol didn't work out for me, I've just gone back to using Imodium as needed, and that seems to be good enough now.
On the blood counts you mentioned ... That's another not-uncommon problem with Revlimid maintenance. My platelets have been in the range of 56-117 K/mcL (usually in 70's or 80's) over the past year, and ANC ranging between 1.0 and 2.8 K/mcL during that time. February was the 1.0 K/mcL month, so they gave me a Neupogen injection to try to boost things. We'll see how they look when I go in for my monthly visit Wednesday.
On a more philosophical note, your question about what defines tolerance is a really good one. It's something I've asked myself several times. How bad does the diarrhea need to get before I say "No mas!"? Or how low for my platelets or ANC to go before my doctor says the same thing? I don't know. I'm in a clinical trial and the protocol calls for me to be on Revlimid maintenance for 2 years (through this coming September), and I want to complete that if at all possible. But I also realize that each month is a new decision point for us in this journey.
Best wishes to you, Kully. You're definitely not alone.
Mike
Sorry to be a little late to comment on this thread; I've been out of town.
And thanks, Boris, to pointing Kully to the Welchol thread I started.
I think the main thing is that diarrhea is, in fact, a pretty common side effect with Revlimid maintenance. So you are not alone at all, Kully. I've been on Revlimid maintenance at 10 or 15 mg, depending on how things are going, for 17 months now. During the first 6-8 months of that time, I was like Kaew, bouncing between diarrhea and constipation. But, since then, I've been more like you, with off-and-on diarrhea (more on than off, I guess). After the Welchol didn't work out for me, I've just gone back to using Imodium as needed, and that seems to be good enough now.
On the blood counts you mentioned ... That's another not-uncommon problem with Revlimid maintenance. My platelets have been in the range of 56-117 K/mcL (usually in 70's or 80's) over the past year, and ANC ranging between 1.0 and 2.8 K/mcL during that time. February was the 1.0 K/mcL month, so they gave me a Neupogen injection to try to boost things. We'll see how they look when I go in for my monthly visit Wednesday.
On a more philosophical note, your question about what defines tolerance is a really good one. It's something I've asked myself several times. How bad does the diarrhea need to get before I say "No mas!"? Or how low for my platelets or ANC to go before my doctor says the same thing? I don't know. I'm in a clinical trial and the protocol calls for me to be on Revlimid maintenance for 2 years (through this coming September), and I want to complete that if at all possible. But I also realize that each month is a new decision point for us in this journey.
Best wishes to you, Kully. You're definitely not alone.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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