CLL treatment

[helpisonitsway]

Hi there. I'm new to the forum. I was wondering if anyone is on Venetoclax and infusions of Obinutuzumab.my Venetoclax has been increased to 400mg a day. White cell count is low and I'm having lots of diarrhoea and tummy pain.

[BigHT]

hi and welcome. I’m in cycle 9 of VnO treatments. Only issue I’m having and it’s pretty severe, is diarrhea. Went to my GI Dr and getting another colonoscopy just to be safe but he is 95 pct sore it’s from the V

[Jujy in reply to BigHT]

My husband is starting cycle four of V/O and is thinking he wants a colonoscopy to rule out other causes of GI pain. Good luck - please post about your results - hoping your doctor is correct.

[patagozon in reply to Jujy]

I'm due for a colonoscopy, but haven't had one due to my low neutrophils. I'm currently at cycle five of V/O and my neutrophils have been recovering over the last month (0.95 -> 1.06 -> 1.11 -> 1.19). I think once they reach 1.5, my oncologist will give the go ahead for a colonoscopy. If necessary, he'll stop my Venetoclax for a week prior and after the procedure.

I'm curious if others have had this concern regarding colonoscopies and what precautions your doctors took. Thanks

[Jujy in reply to patagozon]

So the concern is solely because of neutrophils?

[patagozon in reply to Jujy]

Yes. I think if any polyps are removed, there's a risk of bacterial infection.

[storert in reply to patagozon]

I have been on O and V but can't get past week 2 in the ramp up phase due to Neutropenia. In fact, I've been in the hospital for the week fighting a sinus infection from hell. I won't be released until my numbers improve. That said, even before this hospital stay, my hematologist warned me against scheduling any colonoscopy during treatment. As mentioned, infections can start when polyps are removed and I now speak from experience warning that ANY infection becomes a big deal with low neutrophils and WBC, in general. I won't risk one with my colon. It can wait.

[peghip]

I'm on venetoclax and diarrhoea is one of the side effects. It not consistent and is definitely related to what I have eaten. Fat a grease appears to be something that brings on diarrhoea, there doesn't seem to be any effect from cereals, so bread rice pasta and potatoes are good. This is how my body reacts yours will be different. Try changing your diet, try to relate the extent of your diarrhoea to what you've eaten in the past 6 hours and try to adjust what you eat or don't eat on that to see if it improves it. Keep a diary of what you eat and incidence and severity of diarrhoea. I have also noticed sometimes it is the combination of food, which is why it can be inconsistent.

[carnvellan]

O+V has given me constipation not diarrhea! But it has given me joint pains and low neutrophils which was fixed by reducing the V to 300mg. I'm fine on that and my haematologist is happy that it will be effective. My bloods are good.

[Flute117]

I had ongoing issues with diarrhea while on Venetoclax and lost 10 lbs. I worked with a dietician at the cancer center and was able to control it at least to the point where I stopped losing weight.

I ate mostly oatmeal, applesauce, hard/aged cheese, plainly prepared chicken and salmon, eggs, sweet potatoes, green beans, butterhead or iceberg lettuce, peeled apples or pears. The key was to avoid a lot of insoluble fiber. And I found adding a glass of Metamucil dissolved in water helped a lot by bulking up the stool.

Most of the issue resolved a couple of weeks after finishing treatment, but it does return from time to time. Fortunately it is now just a sporadic occurrence - not a daily one. I just revert to that diet to help get through a rough patch.

[jillybird13]

Am on the same treatment and swing between not going at all to running to the bathroom. I have been prescribed Movicol for one and Lopermide for the other. Quite a juggling act to decide which one is needed.

[Big_Dee]

Hello helpisonitsway

I am at 5 months in on V&O treatment. I take full 400 mg Venetoclax and will finish Obinutuzumab at end of this month. The V&O has stopped a lot of my gastrointestinal issues like acid reflux and etc. On the other hand, I do have what I term mild diarrhea about once a week or so. I any case I feel the diarrhea is easy to live with considering my bloods are almost all in normal range. Blessings.

[lisakc1]

My Husband is halfway through his V+O treatment, we have heard that taking the V with the evening meal helps. He is getting through his first bought of Neutropenia and will hopefully receive his last O infusion tomorrow. I would add more fiber to your diet, drink tons of water and take the V in the evenings and see if that helps, it takes several months for your body to adjust to this new cocktail of drugs. Wishing you all the best on your journey to remission!

[Rovering_Rose]

I was on o & v. I had diarrhea from time to time. There was no logic to it. Once I finished treatment, the diarrhea stopped

[Iupiter]

I went through a 15 month clinical in 2020 and 2021 with Ibrutinib, O and V. I had diarrhea for a few days about every 2 or 3 weeks. I found that taking my pills with a full meal helped a lot in reducing the diarrhea. It didn't completely eliminate the problem, but it definitely helped in making it more bearable. It was important that I take them not just with some food but with a full meal. In the end, the treatment worked. I have been uMRD since the end of 2021. All the best.