I am a 24 year CLL patient. I have been on 140mg of Ibrutinib daily for the last 8 years.
8 months ago my Dr. added VenClexta to my regimen at 400mg daily. I initially had a hard time with nausea and vomiting daily. I now have that mostly under control with a rare episode of vomitting. However over the past 8 months I have dropped about 25 lbs. Recently it has been the diarrhea that has been persistent and the weight loss seems to be progressive. Has anyone had this issue and conquered it?
As I look at the side affects of VenClexta I seem to have 7 of 11 side affects.
Thank you.
Written by
999990Bruno
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I have very aggressive CLL and am now on second treatment regime of Venclexta & Gazya. I lost 15 pounds before taking V&O, my apprite seems to have returned after first month of V&O. I have regained 5 pounds. I have had couple bouts of nausea and vomiting in 3 months I have been on Venclexta. I did have mild fever for 3-4 days at start of Venclexta, otherwise not a lot of side effects I cannot live with. I chose not to take Ibrutinib because I wanted time limited drugs where I did not have to live with side effects for the rest of my life, so I chose B+R for my first treatment. Blessings.
Thank you for reaching out and sharing. I am not sure your exact journey. When I started Ibrutinib it was a new phenomenon with very few known side effects, so I went with it. Now of course there are so many. I had gone through Chemo 5 times and just couldn’t think of that.
The VenClexta was introduced in addition to take the CLL into permanent remission in 2 years. So so took it.
Briefly i was offered ibrutinib in 2018 shortly after it was approved first line treatment. I had been following trials and etc on ibrutinib and showed 86% success rate for CLL with about 12% of patients suffered bleeding and a-fib. After deciding on B+R over ibrutinib I attended a CLL webinar from MD Anderson which had about 23%-24% bleeding and a-fib. I suspect that as ibrutinib was prescribed to general CLL population that the bleeding and a-fib increased as trial patients were selected based on lack of secondary medical issues. It does not mean it was not effective, I choose B+R because I wanted to get treatment over with, without living with adverse side effects for rest of my life. The B+R did that for me. I had very aggressive CLL, doubling every 2.5 months, cleared WBC from 197K+ to 18K in 10 days after first treatment. There is not any wrong treatment choice we each have different needs. Blessings.
I have had to adjust my diet a bit. On the ibrutinib, nothing really worked well in terms of the diarrhea, but I was able to eat enough to keep my weight. I ate a lot of youghurt with blueberries on top of a daily protein shake with ground golden flaxseed. On Venclexta, I eat more steel cut oatmeal and mild to medium chili beans (I like pinto best) plus mixed vegetables with carrot, green bean, corn, peas. I find on the Venclexta I need more fiber. Since I am eating more carbs, I am not losing weight. Sugary stuff makes me ill, as does white flour. I seem to tolerate a sourdough bread or cracker, but not regular cracker. Too many nuts has my herpes flaring. And frozen packed dinners, even if organic, has my body saying No. So I eat very simply, and definately don't follow the "food pyramid" because I don't seem to tolerate white flour stuff like pasta or breads At All. My feces are more formed when I avoid sugar and flour. So maybe vary your foods a bit and see. It seemed odd at first to have a couple cups of buttered vegetables sprinkled with maybe a tablespoon of Parmesan cheese for dinner, but I find taking fat about 1/2 hour before the Venclexta calmed my GI tract a lot. Since Venclexta is more thoroughly and completely absorbed with a fatty meal, there is less drug to irritate the GI tract, if that is even partially responsible for some of your GI distress.
Others have commented on changing the type of food and time of day helps. I needed to switch to a fatty meal and late in the day, when I am not as active.
I prayed for you being 24 and dealing with CLL. I prayed you handle your treatment and get well. I consider myself lucky not to get it until 56. Haven’t had treatment. Wait and watch. Hang in there. BRAT diet for diarrhea bananas, rice, apple sauce and toast have always heard. God bless you.
I lost about 15 pounds on Venclexta due to diarrhea. I worked with a nutritionist/dietician who really helped me. I stopped eating anything with skins and seeds (tomatoes were a big problem for me), limited my vegetables to sweet potatoes, carrots, parsnips, green beans, and broccoli (some people have trouble with broccoli).
I took my pills with dinner and ate a lot of unhealthy carbs like pasta and bread and aged cheeses because chicken, fish, and other proteins were unappealing.
The biggest thing that helped me was adding Metamucil once a day to help bulk up the stool. It didn’t completely stop the diarrhea, but it improved enough to slow the weight loss. Hope this info helps.
ps - I am still uMRD going on 14 months after my last V pills.
I lost 20 lbs before I started treatment and then another 10 after starting treatment. I had trouble the whole time I was on the Ibrutinib/Venetoclax combo. And also while on full dosage of just Ibrutinib. I lived on plain bagels, crackers and ginger ale for months. Anti diarrhea drugs did not work for me nor did adding Metamucil. My gastroenterologist finally prescribed Cholestyramine which is a drug for high cholesterol which has a side effect of constipation. It is in powder form so you can adjust the amount to that which helps you without causing constipation. I am now on a maintenance dose of 140 mg of Ibrutinib and no longer have any GI issues at all. I have gained the last 10 lbs back, but the first 20 have stayed off.
It's interesting to read about the weight loss people experience from taking Venclexta. For me it's the opposite. I've put on ten to fifteen pounds (4.5 to 6.8 kg) and no matter how hard I exercise or healthy I eat, I can't seem to drop any weight.
My doctor was thinking about ordering an ultrasound to see what's going on (I think he said something about water build up?).
I have had the same issue since starting Venetoclax with my V&O combo. I am up about 25lbs and it doesn't matter what I do, it just keeps going up. It has leveled off a little bit it is still slowly going up.
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