Hello,
Last Spring, my dad was diagnosed with multiple myeloma. I was away at college when he was diagnosed, admitted to the hospital for a week or so, and started treatment. By the time I was home for summer break, he seemed to be doing a lot better. I wasn't given a lot of details about his treatment, and I didn't ask, because he seemed to be doing so well. His cancer eventually moved into remission.
Here's where the problems come in... His doctor has him remaining on Revlimid for maintenance therapy, which is an off-label use according to my research (Revlimid isn't approved for maintenance therapy, just for initial treatment, as I understand it, but I may be wrong, I'm not an expert, only an observer).
That would all be fine if it wasn't for the diarrhea. On Revlimid, my dad suffers from it constantly. For the past several months, he has completely changed his diet to accomodate Revlimid. My dad used to be the beacon of healthy eating -- a big salad every evening, vegetables with every meal, he has his own garden, with a few indulgences here and there... I mean, he wasn't perfect. (The more I read about growth hormone usage in cows, the more I wonder if the contaminated meat/dairy he consumed was responsible...).
These days, however, he can't eat vegetables or most fruit without having to run to the toilet. Since he has a busy life that doesn't permit using the bathroom all day, he has basically cut out vegetables and eats a lot of rice, peanut butter, bread, and meat... and he still eats the ice cream even though I tell him he needs to watch out, that cutting out vegetables is definitely not the route to healing.
I ask him if he's talked to his doctor about all the dietary changes he's had to make to accommodate Revlimid, and if he might be better off taking a holiday from the medicine for awhile. Again, I'm no expert, but I'm really interested in natural remedies and a strong believer that the standard American diet is responsible for most illnesses.
I just thought I'd ask around for some opinions from people who really know their stuff. Is it really a good idea to stay on a medicine if it forces you to cut out important food groups? I suppose when it's your life at stake, it's not an easy question.
I'm just looking for an outlet for all my worries, I can't see how someone can heal on a diet heavy on grains and low quality meats, but my dad won't take my opinion seriously as I'm not an expert on cancer. I suppose he should trust his doctor, but I worry that he isn't telling his doctor about his new diet, cause he's the type who'll never stop to ask for directions, thinks he can take things in his own hands, etc.
I also worry that his relationship with my mom could be hurting him; she loses her temper easily and I feel like I'm walking on eggshells trying not to say the wrong thing around her -- I can't imagine being him because even spending 5 minutes with her is enough to drain my spirits.
Is there any evidence as to mind-body links with cancer? Holding your feelings in constantly is definitely painful enough, if you told me it caused physical illness I wouldn't be surprised.
Well I guess that's all I've got. I don't know anyone else who's struggling with this, so any advice or thoughts from you all would be appreciated.
Best wishes to everyone out there dealing with cancer themselves or feeling powerless with a family member's illness. Our hardships just remind us how important it is to love with all our hearts while we're here on earth.
Forums
Re: Chronic diarrhea while taking Revlimid
Hello,
Has your father told his physician about the diarrhea? Given that he has been in the hospital, he may have acquired C. diff infection which can be very serious if not treated.
My husband has been receiving Revlimid, dex and carfilzomib for over a year and experienced similar symptoms several months ago. He didn't want to tell the doctor and thought it was a normal side effect of the chemos, but lab tests showed it was C diff and needed to be treated with Flagyl.
Your father is lucky to have such a caring daughter. Best wishes to you both.
Has your father told his physician about the diarrhea? Given that he has been in the hospital, he may have acquired C. diff infection which can be very serious if not treated.
My husband has been receiving Revlimid, dex and carfilzomib for over a year and experienced similar symptoms several months ago. He didn't want to tell the doctor and thought it was a normal side effect of the chemos, but lab tests showed it was C diff and needed to be treated with Flagyl.
Your father is lucky to have such a caring daughter. Best wishes to you both.
-
MM wife
Re: Chronic diarrhea while taking Revlimid
Hi Worried Daughter,
I would be worried too, if it were my Dad, and even if they don't show it, your parents are probably really reliant on your support also. Are you able to go to doctors' appointments with them occasionally , to ask questions of the oncologist? Quite often, you will see several people accompany a patient into an appointment. It's not that unusual!
I agree with MMWife that tests would indicate if he has a serious infection such as C. difficile. That would require immediate treatment.
I think that Revlimid is actually approved for 'relapse', not 'initial therapy', but you could check that one out also. It doesn't seem to make much difference though, since lots of patients in these forums take Revlimid as part of initial treatment. The 'politics' and financial considerations behind drug approvals are a whole study unto themselves!!
As far as diet goes, the 'cancer' diet recommends at least six servings of fruit and vegetables per day. Maybe if they were cooked, not raw, they would be easier to digest, and not too hard on the digestive system. There is lots of literature on the subject of diet for cancer patients.
I took Revlimid for a year, in a low dose, and did have some digestive problems, repeated bouts of stomach flu. At the time, I couldn't know if this was due to the drug or due to the fact that my weak immune system was just allowing me to catch any 'bug' out there circulating in the community. Probably a bit of both.
I guess you could also ask the physicians for how long your father is going to remain on the drug, and if he is in a remission, or still needing drugs to contain the myeloma. Lots of considerations there. It's not a simple yes or no usually as to what treatments and for how long to take them.
Hope I haven't thoroughly confused you! Best wishes to you and your family.
I would be worried too, if it were my Dad, and even if they don't show it, your parents are probably really reliant on your support also. Are you able to go to doctors' appointments with them occasionally , to ask questions of the oncologist? Quite often, you will see several people accompany a patient into an appointment. It's not that unusual!
I agree with MMWife that tests would indicate if he has a serious infection such as C. difficile. That would require immediate treatment.
I think that Revlimid is actually approved for 'relapse', not 'initial therapy', but you could check that one out also. It doesn't seem to make much difference though, since lots of patients in these forums take Revlimid as part of initial treatment. The 'politics' and financial considerations behind drug approvals are a whole study unto themselves!!
As far as diet goes, the 'cancer' diet recommends at least six servings of fruit and vegetables per day. Maybe if they were cooked, not raw, they would be easier to digest, and not too hard on the digestive system. There is lots of literature on the subject of diet for cancer patients.
I took Revlimid for a year, in a low dose, and did have some digestive problems, repeated bouts of stomach flu. At the time, I couldn't know if this was due to the drug or due to the fact that my weak immune system was just allowing me to catch any 'bug' out there circulating in the community. Probably a bit of both.
I guess you could also ask the physicians for how long your father is going to remain on the drug, and if he is in a remission, or still needing drugs to contain the myeloma. Lots of considerations there. It's not a simple yes or no usually as to what treatments and for how long to take them.
Hope I haven't thoroughly confused you! Best wishes to you and your family.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Chronic diarrhea while taking Revlimid
I'm taking Revlimid 5mg (lowest dose) as maintenance therapy and have frequent bouts with diarrhea. I also have had a colitis condition since my teen years that fortunately flares up only every 20 years or so.
I've adjusted my diet, pretty much cutting out salads but not vegetables. I also think red meat is a problem, as is alcohol. My doctor said an allergy to dairy products is very common, and I've cut those down..Loperamide, available over the counter, seems to put a quick stop when I have a bout of diarrhea.
Constant diarrhea sounds different, and I'd agree that your dad should be tested for C diff or another infection.
I've adjusted my diet, pretty much cutting out salads but not vegetables. I also think red meat is a problem, as is alcohol. My doctor said an allergy to dairy products is very common, and I've cut those down..Loperamide, available over the counter, seems to put a quick stop when I have a bout of diarrhea.
Constant diarrhea sounds different, and I'd agree that your dad should be tested for C diff or another infection.
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Ron - Name: Ron
- When were you/they diagnosed?: Nov. 2010
- Age at diagnosis: 63
Re: Chronic diarrhea while taking Revlimid
I was just released from the hospital with C diff and viral meningitis. I have been on VRD for 3 1/2 years. The dosages have been reduced, but the constant has been the Revlimid, which has stayed at 10mg on 21 days and off 7.
Since my hospitalization (was in for 4 days), I have been temporarily taken off chemo. I have been in remission for over 3 years. However, the chemo and multiple myeloma keeps my blood counts down slightly below normal (red count around 4 and white count between 3.8 and 4.2). Thus I have slight anemia, which is very common with multiple myeloma. This makes you susceptible to infections like C diff.
C diff is a horrible infection and very contagious. It is an opportunistic infection. In my case, the viral meningitis weakened my system enough to allow the C diff to take hold. I am on the mend now but lost 14 lbs over 3 weeks.
So you need to be conscious of the weakened immune system and never take diarrhea for granted.
Ron Harvot
Since my hospitalization (was in for 4 days), I have been temporarily taken off chemo. I have been in remission for over 3 years. However, the chemo and multiple myeloma keeps my blood counts down slightly below normal (red count around 4 and white count between 3.8 and 4.2). Thus I have slight anemia, which is very common with multiple myeloma. This makes you susceptible to infections like C diff.
C diff is a horrible infection and very contagious. It is an opportunistic infection. In my case, the viral meningitis weakened my system enough to allow the C diff to take hold. I am on the mend now but lost 14 lbs over 3 weeks.
So you need to be conscious of the weakened immune system and never take diarrhea for granted.
Ron Harvot
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Chronic diarrhea while taking Revlimid
Hi
I am not sure if anyone still is interested in this, but I have been on maintenance 15 mg Revlimid for 5 years now. I am 30 and have had issues for a long time with upset stomachs. I am also on routine antiviral (basically Valtrex) and antibiotics to help in case i do get sick while on Relvimid. For years now I have had issues where no matter what I eat, I almost instantly, it seems, I have to use the bathroom.
Recently I found an article about a small UK study of Revlimid patients, diarrhea, and taking Welchol (cholestyramine). About a month ago, Ii asked my doctor about it, and we though we would give it try. It has been great. I feel a lot better. I take it once a day at night, and my issues have gone down significantly.
The first day was almost too good to be true, but it really works, as long as you keep up on it. I have done some self-testing, and it seems that after about the 2nd day of not taking it, my issues come back. So if i am good about taking the medicine, its good to me.
Hope this helps someone else out there.
Moderator's Note:
The study Frank mentions was discussed in this Beacon news article:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, The Myeloma Beacon, Oct 14, 2014.
A related experience shared by one of the Beacon's columnists can be found here:
Gordon, Andrew, "Myeloma Lessons: A Dirty Little Story," The Myeloma Beacon, May 1, 2015
Related Beacon forum discussion:
"Welchol (colesevelam) - any experiences with it?" (started Dec 4, 2014)
The reference for the original study by researchers in the UK is:
Pawlyn, C, et al, "Lenalidomide-induced diarrhea in patients with myeloma is caused by bile acid malabsorption that responds to treatment," Blood, October 9, 2014 (full text of article)
I am not sure if anyone still is interested in this, but I have been on maintenance 15 mg Revlimid for 5 years now. I am 30 and have had issues for a long time with upset stomachs. I am also on routine antiviral (basically Valtrex) and antibiotics to help in case i do get sick while on Relvimid. For years now I have had issues where no matter what I eat, I almost instantly, it seems, I have to use the bathroom.
Recently I found an article about a small UK study of Revlimid patients, diarrhea, and taking Welchol (cholestyramine). About a month ago, Ii asked my doctor about it, and we though we would give it try. It has been great. I feel a lot better. I take it once a day at night, and my issues have gone down significantly.
The first day was almost too good to be true, but it really works, as long as you keep up on it. I have done some self-testing, and it seems that after about the 2nd day of not taking it, my issues come back. So if i am good about taking the medicine, its good to me.
Hope this helps someone else out there.
Moderator's Note:
The study Frank mentions was discussed in this Beacon news article:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, The Myeloma Beacon, Oct 14, 2014.
A related experience shared by one of the Beacon's columnists can be found here:
Gordon, Andrew, "Myeloma Lessons: A Dirty Little Story," The Myeloma Beacon, May 1, 2015
Related Beacon forum discussion:
"Welchol (colesevelam) - any experiences with it?" (started Dec 4, 2014)
The reference for the original study by researchers in the UK is:
Pawlyn, C, et al, "Lenalidomide-induced diarrhea in patients with myeloma is caused by bile acid malabsorption that responds to treatment," Blood, October 9, 2014 (full text of article)
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FrankZ4
Re: Chronic diarrhea while taking Revlimid
I have been on maintenance therapy with Revlimid 10mg daily for three years now as part of clinical trial BMT CTN 0702 and now the follow-on trial BMT CTN 07LT. In January I started using cholestyramine for diarrhea as well. It works quite well and the only annoyance is you have to take it either 1 hour before taking other medication or 4 hours afterward. Since it's a powder you can adjust the dosage to obtain normal bowel movements. It did drop my cholesterol a bit as well, not that I needed my cholesterol lowered.
Bill
Bill
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Bill Babcock - Name: Bill Babcock
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 54
Re: Chronic diarrhea while taking Revlimid
I have had a history of acid reflux and of chronic diarrhea for over 10 years before my myeloma was diagnosed in late 2014. My GI woes were pretty much under control with Protonix (pantoprazole) and ranitidine (Zantac) even during the induction phase (8 months, till about September 2015) of my treatment. However, my diarrhea started getting worse after about a year of the maintenance treatment (towards the end of 2016). It got to be so severe that I had to use suppositories and other means to ease the related pain and soreness.
My PCP wasn't convinced that this was anything unusual even though I never had such severe diarrhea before. I think his GI specialist colleagues must not have been familiar with the Revlimid diarrhea at the time. Thanks to Frank Z4 and also thanks to the moderator's notes, I was able to show the related articles to my PCP. Finally I started the cholestyramine in mid 2017 and it cured my diarrhea almost immediately. I had to lower the dose to avoid constipation, though.
Side effects - I was taking the cholestyramine at least 6 hours before my Revlimid (4-6 hour interval was recommended) to avoid any malabsorption of the Revlimid. However, my kappa and kappa-lambda ratio readings rose by 20% and 30%, respectively, after a month or so of the cholestyramine. (I have kappa light chain multiple myeloma.)
My oncologist recommended and I increased the time interval by 12 hours, skipping the cholestyramine on the evening of the alternate day Revlimid dose. That brought my kappa and kappa-lambda ratio levels down to the pre-cholestyramine levels, and the ratio actually dropped down from the 1.75-1.85 level to below 1.6! My kappa remained in the 45-48 mg/L (normal 3.3-19.4 mg/L) where it had been for almost a year. I do have the Revlimid diarrhea on the morning after I take my (alternate day) Revlimid at night. That is manageable.
My oncologist had indicated that he would recommend Imodium (loperamide) for the Revlimid diarrhea. Therefore, I decided to experiment with Imodium at the end of my November blood test. Imodium did not seem to work well for me, at least for diarrhea prevention. Therefore, I had to take it multiple times a day. It still wasn't as effective as the cholestyramine. The major surprise was my December blood test showed that my kappa shot up by 35% and the kappa-lambda ratio was up by 21%. That was the worst 4-week jump in my readings since I had to stop the weekly dexamethasone per my oncologist's advice. I was certain that the Imodium was causing some interaction with the Revlimid absorption, and I started keeping about 6-hour interval between the two. It seemed to help and my kappa and the kappa-lambda ratio came down by 10%, each.
I got the advice to "Stay the course, don't panic" and that "Such variations are normal". I did not agree. I have been tracking these blood test results for over 3 years and just about every sudden changes in these parameters (up or down) have been caused by specific events; a flu during the induction phase, stopping the dex, stopping all alcohol and resuming it after 3 cycles, the cholestyramine and the Imodium. Therefore, I went back to cholestyramine in mid January and sure enough my kappa dropped by almost 20%, close to the upper limits of the early 2017 readings (before I started taking any cholestyramine or Imodium). The kappa-lambda ratio is also in the range it was in at the time. I am glad that my kappa level and kappa-lambda ratio have been stable for over a year since I went down from a 20 mg alternate day Revlimid to a 15 mg alternate day dose and my diarrhea is tolerable now (with cholestyramine).
Conclusions (in my case):
The Revlimid diarrhea can be controlled by cholestyramine. Cholestyramine (and Imodium, too) interferes with the absorption of the Revlimid and the two must be separated by 12 hours.
I am totally dependent on Revlimid to keep my kappa light chain myeloma under control. Anything that affects the absorption / effectiveness of the Revlimid adversely affects the suppression of the kappa light chain level.
I will know how the cholestyramine has affected my cholesterol in a few months.
Thanks again, Frank Z4, for referring to the UK article and thanks to the Beacon moderator for citing the past Beacon news articles.
My PCP wasn't convinced that this was anything unusual even though I never had such severe diarrhea before. I think his GI specialist colleagues must not have been familiar with the Revlimid diarrhea at the time. Thanks to Frank Z4 and also thanks to the moderator's notes, I was able to show the related articles to my PCP. Finally I started the cholestyramine in mid 2017 and it cured my diarrhea almost immediately. I had to lower the dose to avoid constipation, though.
Side effects - I was taking the cholestyramine at least 6 hours before my Revlimid (4-6 hour interval was recommended) to avoid any malabsorption of the Revlimid. However, my kappa and kappa-lambda ratio readings rose by 20% and 30%, respectively, after a month or so of the cholestyramine. (I have kappa light chain multiple myeloma.)
My oncologist recommended and I increased the time interval by 12 hours, skipping the cholestyramine on the evening of the alternate day Revlimid dose. That brought my kappa and kappa-lambda ratio levels down to the pre-cholestyramine levels, and the ratio actually dropped down from the 1.75-1.85 level to below 1.6! My kappa remained in the 45-48 mg/L (normal 3.3-19.4 mg/L) where it had been for almost a year. I do have the Revlimid diarrhea on the morning after I take my (alternate day) Revlimid at night. That is manageable.
My oncologist had indicated that he would recommend Imodium (loperamide) for the Revlimid diarrhea. Therefore, I decided to experiment with Imodium at the end of my November blood test. Imodium did not seem to work well for me, at least for diarrhea prevention. Therefore, I had to take it multiple times a day. It still wasn't as effective as the cholestyramine. The major surprise was my December blood test showed that my kappa shot up by 35% and the kappa-lambda ratio was up by 21%. That was the worst 4-week jump in my readings since I had to stop the weekly dexamethasone per my oncologist's advice. I was certain that the Imodium was causing some interaction with the Revlimid absorption, and I started keeping about 6-hour interval between the two. It seemed to help and my kappa and the kappa-lambda ratio came down by 10%, each.
I got the advice to "Stay the course, don't panic" and that "Such variations are normal". I did not agree. I have been tracking these blood test results for over 3 years and just about every sudden changes in these parameters (up or down) have been caused by specific events; a flu during the induction phase, stopping the dex, stopping all alcohol and resuming it after 3 cycles, the cholestyramine and the Imodium. Therefore, I went back to cholestyramine in mid January and sure enough my kappa dropped by almost 20%, close to the upper limits of the early 2017 readings (before I started taking any cholestyramine or Imodium). The kappa-lambda ratio is also in the range it was in at the time. I am glad that my kappa level and kappa-lambda ratio have been stable for over a year since I went down from a 20 mg alternate day Revlimid to a 15 mg alternate day dose and my diarrhea is tolerable now (with cholestyramine).
Conclusions (in my case):
The Revlimid diarrhea can be controlled by cholestyramine. Cholestyramine (and Imodium, too) interferes with the absorption of the Revlimid and the two must be separated by 12 hours.
I am totally dependent on Revlimid to keep my kappa light chain myeloma under control. Anything that affects the absorption / effectiveness of the Revlimid adversely affects the suppression of the kappa light chain level.
I will know how the cholestyramine has affected my cholesterol in a few months.
Thanks again, Frank Z4, for referring to the UK article and thanks to the Beacon moderator for citing the past Beacon news articles.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Chronic diarrhea while taking Revlimid
Wow - nicely done, K_Shash! Thanks very much for posting that.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Chronic diarrhea while taking Revlimid
Hi all,
My husband is on Revlimid maintenance (15 mg, 3 weeks on, 1 week off) and has had issues with the Revlimid diarrhea as well. His oncologist suggested cholestyramine, and it has helped a lot. He usually does a 1/2 packet morning and evening. It has not affected the efficacy of Revlimid as far as I can tell. He's been using cholestyramine for several months, and his disease state has been stable.
Hope this helps!
Margie
My husband is on Revlimid maintenance (15 mg, 3 weeks on, 1 week off) and has had issues with the Revlimid diarrhea as well. His oncologist suggested cholestyramine, and it has helped a lot. He usually does a 1/2 packet morning and evening. It has not affected the efficacy of Revlimid as far as I can tell. He's been using cholestyramine for several months, and his disease state has been stable.
Hope this helps!
Margie
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