Myeloma Lessons: A Dirty Little Story
My primary audience for these columns is the myeloma patients and their caregivers who frequent The Myeloma Beacon. But, as I am sure is the case with my fellow columnists, I share my column with friends and relatives by email and by posting links on social media. For that reason, I try to make the subjects – although always myeloma-related – somewhat universal.
At the risk of alienating my non-myeloma audience, this month I write about a very specific myeloma-related issue: diarrhea.
And not just any diarrhea, but diarrhea brought about by the myeloma drug Revlimid (lenalidomide).
My initial three-drug induction regimen was the VRD protocol, with the “R” standing for Revlimid. I was on this treatment for about six months. There were some side effects, but diarrhea was not an issue.
About two months after my stem cell transplant at the end of January 2014, I began Revlimid maintenance. At first, there were no noticeable side effects. But as time went on, I began to have occasional diarrhea episodes (henceforth referred to simply as “episodes”). They were rare at first – maybe once every couple of weeks – and I would just pop a couple of Imodium (loperamide) pills and that would take care of it.
But slowly the problem began to escalate.
I started to have the episodes more frequently. They began to occur once a week. Still, the Imodium seemed to take care of it, so I didn’t seek any further treatment.
After about two months of the once-a-week routine, the episodes came more often. Twice a week was the norm for a while.
Then it became more persistent – every couple of days. And sometimes I needed more than one dose of Imodium to keep it bay.
Worse yet, this was seriously affecting my quality of life. I dreaded going out to a restaurant or someone’s house for a meal since an episode might come on quickly before I could make it home. I took to carrying Imodium with me whenever I went out.
It even began to interfere with my bike rides; twice I had to seek out an emergency bathroom during a ride. I was lucky enough to find one in time on both occasions. It could have been a serious mess!
I knew that it was time to do something about this problem, but I was reluctant to reduce my Revlimid dose below 10 mg per day since my feeling is that this is the lowest efficacious maintenance dose.
I remembered reading an article at The Beacon reporting on a small British study that examined the use of a drug called Welchol (colesevelam, Cholestagel) to treat Revlimid-induced diarrhea. So I dug the article up and read it.
Welchol is a bile acid sequestrant. According to the study as reported in The Beacon, Welchol can be effective in preventing or ameliorating diarrhea caused by Revlimid since that side effect is often caused by bile acid malabsorption. The study also reported that some patients got relief by simply reducing the fat in their diet, but I did not think that was a viable approach for me since my diet does not include a lot of fat.
The Beacon article also pointed out that doctors at the Dana-Farber Cancer Institute in Boston had since 2009 been prescribing a drug call Colestid (colestipol) for Revlimid-related diarrhea. Colestid, like Welchol, is a bile acid sequestrant. The doctors at Dana-Farber prescribe 2 grams of Colestid up to three times a day for their patients.
Some of the comments from Beacon readers posted in response to the article gave me some encouragement that Colestid might work for me.
I did some further research on the drug and found that it provided relief to people suffering from irritable bowel syndrome and other similar conditions. This seemed like a promising approach.
At my next appointment with my myeloma specialist, I asked him if he had ever prescribed these drugs, used primarily to treat high cholesterol, to combat diarrhea caused by Revlimid. He said that he had used Questran (cholestyramine) but had not heard of Colestid. I showed him the Beacon article and highlighted the portion of the article that mentioned the success the Dana-Farber doctors reported.
He supported my request to try Colestid, observing that if it worked for me, he would now have another approach to try with his other patients.
I was hopeful that this drug would work for me, but I was aware that none of the bile acid sequestrants were effective for everyone suffering from diarrhea caused by Revlimid.
I decided to start with the maximum dosage used by the Dana-Farber doctors with the idea that, if it proved effective, I could slowly reduce the dosage.
But this approach was challenging for a reason that I did not appreciate at first.
Because drugs like Colestid and Welchol bind to substances in the stomach other than bile acid, they can interfere with other drugs that the patient may be taking. The guidance is that other drugs should be taken at least one hour before, or four hours after, the bile acid sequestrant. Trying to fit three doses of this stuff into my carefully constructed medication schedule was quite a challenge. On more than one occasion, I fell asleep before the required four hours had expired and had to wake up during the night to take my last dose of the day.
But these challenges were worth it.
I had three episodes in the four days before I starting taking the Colestid. Since then, I have had none!
After two weeks, I reduced the dosage to two grams twice a day. About two and a half weeks after that, I reduced the dosage again to two grams once a day. And still no episodes.
In the interest of full disclosure, I will say that I have had a couple occasions where I thought an episode was imminent, and the result was not entirely normal, but it was not what I would consider diarrhea. I have not had to take a single Imodium since I began the Colestid.
There are several lessons here. Don’t suffer needlessly with medication side effects. The Beacon is a great resource for seeking information to deal with side effects. And don’t be reluctant to help educate your doctor about options for dealing with side effects. No doctor can be aware of every possible option.
The best part of this story is that my quality of life is greatly improved. If you suffer from this troublesome side effect, I highly recommend that you give one of these drugs a try.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: How My Husband Helps Me Deal With My Multiple Myeloma
- Northern Lights: Myeloma Treatments And Tolerability
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
Thank you, Andrew – so timely. I have an appointment this morning with my gastro doctor because of this issue, which you described as getting more imminent after a few months on Revlimid. I will take this article to him because I, too, think my bouts are Revlimid-related. Suzanne
Thank you for this Andrew.
I had it as bad as you for almost a year. I was afraid to go out and eat, since I knew I'd need the bathroom within 30 minutes. Traveling was also difficult. After a short break from Revlimid due to scheduling when I went back on, it seemed the diarrhea issue lessened. Still there, but better. Not sure why.
Now I'm on Pomalyst, and have a few close calls. Not the same as with Revlimid. I'm wondering if this is something I should try too. I take Imodium before work and don't eat while I'm there as I need to be at a desk. So, I'm wondering, even if the diarrhea is intermittent, would this drug be helpful? Do you feel bloated? Do you have now regular BM? Sorry to be so invasive, but this has been such a downer for me and plus it's embarrassing to "need" to go ...
Thanks for bringing up this issue that I'm sure affects a lot of us.
I can relate to this issue completely, Andrew!
I had exactly the same problem as a side effect of Revlimid. I dealt with the issues of chronic diarrhea for 2 years before I decided to do something about it. It was affecting my quality of life and something had to change (possibly even asking my doctors to go off of Revlimid, which was keeping me in a good 5 -ear remission!) Well, I was prescribed cholestyramine by my doctor. I tried half the dose once or sometimes twice a day and had instant relief from the diarrhea issue. I couldn't believe how effective this was in helping me with this problem and totally giving me my quality of life back. My doctor assured me that it is safe to use and doesn't cause any other side effects. I only wish I had started on it sooner.
LindaO
Suzanne - Let us know what your doctor says.
Christina - I think that it could help if the issue is intermittent. I never felt bloated, just the flood coming. Bowel movements are almost entirely normal.
My family doctor prescribed cholestyramine when I told him my diarrhea was very bile-y. About the time he gave it to me, it stopped being so yellow, so I've never taken it.
My diarrhea has been pretty predictable: most days of the week, usually mid-morning. Once or twice a month it might return later in the day. I certainly take it into consideration as I make plans for the day, just as I had to when I had my gallbladder removed. I keep hoping my system will acclimate to everything.
I still haven't taken the cholestyramine, so I don't know how well it works. I've been off Revlimid several weeks due to neutropenia, but the diarrhea persists. At least it's been pretty predictable.
Excellent article Andrew!
This is the kind of real life experience that makes the Beacon super valuable - especially to new patients. It is up to us to take control of our treatment if we are to maximize our results.
After years of treatment, we have the experience to experiment with dosages and to ask our docs to prescribe drugs they might not have thought of or even heard of. Your experience here is a perfect example of that.
Thank-you for sharing.
Aloha
Tom
I've found cholestyramine helpful with revlimid induced diarrhea for over 3 years now; I will also take imodium if I don't want to have a bowel movement. Before a 4 hour round of golf or dinner and a show, etc. I will take an imodium one hour before the activity. I will not have a bowel movement for 5 - 6 hours which is convenient. Imodium does not cause constipation but allows you to plan a head. The 2 drugs have a different function and purpose.
Hi Andrew,
That was some good writing. I just started Revlimid 2 months ago. First time on it. Nothing yet on what you have experienced. It was some good insight long term.
You said in your article about a transplant. I am in the process of having one done in the future, using my own bone marrow. Can you or any one of the Myeloma Survivors give me what they experienced? It would be greatly appreciated.
Keep the good writing up. It has helped me a lot in this journey. I made 9 years before a relapse. You have a good one. Mark
Hi Mark,
You can find a wide range of stem cell transplant experience, tips, and other related discussions in the Beacon's forum by following this link to stem cell transplant discussions in the forum.
Also, if you go to this posting in the forum, which includes a list of treatment-related topics covered in the forum, you'll see near the bottom of the posting a list of forum discussions where a number of forum members have shared details of their stem cell transplants as they were undergoing their transplants.
Good luck!
It's great that you're getting this word out Andrew. I am a hiker and became expert at imitating a bear in the woods while I was on Revlimid. The day that I couldn't make it from my car to the doctor's office was the day that I quit taking Rev. That was about a year before the Beacon published the article on Colestid and Welchol. It's great to know that, if I go back on Revlimid, I won't have to endure the trauma of uncontrollable diarrhea.
I have on revlimid maintenance for over a year. My primary symptom is constipation. Go figure!
Ah Andrew ... such a timely topic for so many of us!
I, too, have sudden volcanic eruptions like you and others have mentioned!
When prepping for my July 2010 auto SCT, I was on such a high dose of dex (40 mg, 4 days on, 4 days off), with Revlimid 10 mg, that I had the opposite effect. I then did Revlimid 5 mg for 18 months of maintenance (no dex), and then had a respite from most all meds during my last year of remission.
But when M M came roaring back summer 2013, and I returned to Revlimid + dex, I began to realize how different my GI system was after SCT and being back on Revlimid, dex.
As I increased from 5 mg, to 10 mg, to now alternating 10 mg with 15 mg, along with dex 20 mg weekly, omg, porcelain-John is my BFF. And it's the sudden, unpredictable volcanic eruptions that have changed my life. I only go into my office in the mid afternoon, once I know I am "safe", and as others have mentioned, I don't eat while away from home.
This has completely changed my work and social life! But since coming out of remission, I have learned what works and what doesn't. I do love various forms of Imodium for sure, and I have learned to eat out on ex day 1 and 2 ... but omg, on my crash days, home is where I stay.
Funny story about trying to attend a car show I entered my classic VW in. Thought I was going to be ok, but about an hour and half there, I realized disaster was brewing, and I'd never make it home. Hilariously ironic, the porta-potties where strategically placed near where I parked.
Sadly M M, GI upset and my "chew and poo" lifestyle does prevent me from doing so many of my previous-life fun events, as I have no interest in finding a bush, or having a public disaster!
GREAT article you wrote Andrew, that's sadly so relevant for so many of us. Eating out drama, sports drama, work drama ... we all could write some tragically hilarious stories of how we deal with our volcanic eruptions.
"Chew and poo". Very funny Julie. This is a wonderful column and comment string as I bet we all thought we were alone.
Andrew - The gastro doctor indeed prescribed Colestid and also said to go off dairy for the next 3 weeks until I see him again. I'm glad I read your article and went to a gastro doctor before too long. One month of discomfort was enough for me! Already better with just a few pills. Suzanne
Thank you for the article Andrew. My experience with the diarrhea didn’t commence until my gall bladder was removed. I had been on Revlimid for about 2 ½ years ending early in 2009, without any problem. In 2010, the gall bladder was removed and Revlimid recommenced. I had normal bowel movements, but also a mid-morning session of diarrhea, without a lot of warning. This put a crimp in my quality of life, so what to do?
My initial solution was a portable toilet, composed of some toilet paper and a plastic grocery sack. This went with me on my morning walks and everywhere. I’ve had to use it a half dozen times. Most notable, in 2012 walking around downtown Juneau, AK with my wife waiting for the Alaska State Museum to open at 10 am. It worked perfectly, the handles allowing it to be held in place, the mess contained, easily disposed of, and we had a delightful museum tour.
A better solution came from my gastro, who prescribed cholestyramine, two 4-gram packets daily. This has worked fine and we have been able to reduce it to one 4-gram packet each evening. My gastro indicates that the diarrhea syndrome occurs with some people after the gall bladder is removed. So, I’m not sure that in my case it was a side effect of Revlimid.
I appreciate the kind comments. The diarrhea really did affect my quality of life. Like some of you have mentioned, going out to dinner or sometimes going out at all seemed like too big a risk. I still take Imodium along sometimes, but I am thankful that I don't have to use it.
The purpose of writing a column on this subject was to share what has been a huge quality of life boost and let others know that this can help them too. I am thankful that some of you can benefit from this experience.
Thank you Andrew for this very practical and necessary article. While my husband doesn't have this problem right now, he did have issues during induction chemotherapy. We will make sure that we remember your article if (when) this becomes an issue again. I truly appreciate the research you performed on those remedies and the complication with scheduling the medication during the day. My husband has also learned through trial and error when to take his Revlimid and the palliative medications. Like you we have learned not to be too far from a restroom when we are out and about.
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