cll and diarrhea

[Cll12]

any suggestions how to mitigate the diarrhea. I’ve been on Venteclaxta 400 mg for 2/12 months and I cannot get a handle on this . All suggestions welcome

[AussieNeil Partner Administrator]

Welcome to our community, though we would wish it were under better circumstances that you found us!

This post, which popped up in the Related Posts section, includes plenty of suggestions; hopefully you'll find something that helps you in answers there; healthunlocked.com/cllsuppo...

I found this side effect the most annoying one, because of never knowing when it would strike. I also found out that I was not alone in finding that it continued for about 3 months after finishing treatment. My clinical trial nurse said that it was usual for side effects to take a while to resolve after treatment, but the good news is that I'm still enjoying a drug holiday, three and a half years later. Venetoclax has turned out to be a very effective fixed term combination treatment.

Neil

PS I expect you would have received more and earlier replies if you had posted locked to this community. This post and the replies healthunlocked.com/cllsuppo... the pros and cons of locked vs unlocked posts and how to lock your post if you wish to do so. I expect you probably found us through an unlocked post

[Cll12 in reply to AussieNeil]

How long were u on venteclaxta

[AussieNeil Partner Administrator in reply to Cll12]

I was on an AVO (acalabrutinib+obinutuzumab and venetoclax) trial, where the A + O is given before the V to reduce the risk of tumour lysis syndrome. The trial lasted 14 x 4 week cycles, with venetoclax introduced in the third cycle, so I had 12 cycles on venetoclax and reached uMRD (undetectable minimal residual disease).

There are a number of different protocols with venetoclax, including use as a monotherapy. You'll get more helpful answers if you provide some background to your CLL progress and treatment in your posts, or even better, by populating your bio through this shortcut: healthunlocked.com/profile/...

Neil

[SeymourB in reply to AussieNeil]

AussieNeil

12 weeks or 12 months (28 day months) on Venclexta?

=seymour=

[Cll12 in reply to SeymourB]

Not sure if you r asking this. 21/2 months on 400 mg

[SeymourB in reply to Cll12]

Cll12 -

Sorry, I meant to ask Neil.

=seymour=

[AussieNeil Partner Administrator in reply to SeymourB]

Well spotted. 12 cycles of 4 weeks on venetoclax. Total time on acalabrutinib was 14 cycles or 13 months.

[ViPOR]

Imam in a present 4;year CR. From my NHL but am suffering from a chronic Norovirus s a result of being immune compromised. That led to a 45 lb weight loss and massive water diarrhea..these viral infections treatable with rehydration But not cureable..I had en on everything to get rid of it ,including oil of opium as prescribed. It has been awful..there are various treatment so follow your docs orders and try one ata time

[thb4747]

My experience is that after a time your system will adjust. It might then reverse — I now take Laxsol for constipation!

[Flute117]

I worked with a dietician at the cancer institute to get my diarrhea from Venetoclax under control. What helped me the most was daily Metamucil (generally thought of as a constipation aid) that bulks up stool and made the diarrhea less frequent. It really helped stop the unintentional weight loss.

My digestive system was mostly back to normal within a couple of weeks after completing treatment.

[Cll12 in reply to Flute117]

Interesting. I thought it would have the opposite effect. Will definitely look into it . Thank you

[Flute117 in reply to Cll12]

I was able to find the unflavored kind and had no issue drinking it. It dissolved completely in cold water.

[Zigster49 in reply to Cll12]

I also was told to take psyllium. The NP said that at low doses it helps with diarrhea, so I continue to take one capsule a day.

[Cll12 in reply to Zigster49]

What is considered a low dose and what time of day do you take it. Thank you

[Zigster49 in reply to Cll12]

I take one capsule a day although I did increase it to two capsules during bouts of C. Diff and Norovirus. I buy a store brand and it doesn’t have an indication of the amount of psyllium in each capsule. It claims to have the same fiber content as Metamucil capsules. Except for diarrhea during a course of amoxicillin, it has worked for me.

I hope you find the answer to your problem soon.

[Cll12 in reply to Zigster49]

Thank you. One more question. Is it important what time of day you take it?

[Zigster49 in reply to Cll12]

I take it in the morning, but I don’t know if the time is important. I do know that it took a few days to start working and I rarely ever miss taking it. I started taking psyllium at least a year before I went on Ventoclax.

[MIMama in reply to Cll12]

Years ago my mother had bad diarrhea. The doctor put ther on Metamucil. Worked. Today, I take Metamucl gummies. and cinnamon bars. It works. Look for the gummies.

[Cll12 in reply to MIMama]

What time of day do I take them

[SeymourB]

Cll12 -

I did 13 cycles of Venclexta, and had diarrhea once a week for the first 6 cycles or so. So, not that bad, really. I did have one embarassing accident, though.

I took a single tablet of Imodium A-D (Loperimide) after a diarrhea BM. I didn't want to take a second pill for the second consecutive watery BM, because I also fear constipation. That seemed to work for me.

At M.D. Anderson, they gave me a stool collection kit to take home in if it went on for days, in case it was some gut infection instead of a side effect of the Venclexta. I never did use it.

=seymour=

[Cll12]

thanks that was helpful

[Golfista]

I changed the time I took Venetoclax from early in the day to immediately after the evening meal and the diarrhea went away. I was told that the digestive system quiets down over night, and it worked for me.

[Cll12 in reply to Golfista]

I was thinking of doing that . We have an 8 hour window. How did you or how long did it take to get to the evening hour. Thank you

[Golfista]

I did it over two days.

[bingbang]

My husband suffered terrible abdominal distress and diarrhea when he started his treatment and a PA at Mayo Clinic prescribed Welchol. He would mix and drink it about a half hour before taking his pills and it worked wonders. You may want to ask your doctor/specialist about this.

[Cll12 in reply to bingbang]

Thank you

[bingbang in reply to Cll12]

You're welcome and good luck to you!