I am presently finishing up cycle 8 of my treatments and all is great except my bathroom issues. There are days when I go 15 times to the bathroom in 1 day. Never less then 5 and for the most part it’s very loose and watery. At times it comes on very very quickly with very little warning. Went to my GI Dr who ran a stool sample but is thinking it might be colitis.
Anyone having these kinds of issues ?
if the venetoclax is responsible, you might find shifting to taking your venetoclax tablets in the evening might cut the invisible tether to your bathroom, because your digestive system (usually) slows when you sleep. You can shift tablet taking time over a couple of days in say 4 hour steps. You could do it with one intermediate step as you are allowed up to 8 hours slip, but I'd err on the side of caution: venclexta.com/previously-un...
I don't miss the very little warning issue (pun not intended) when I was on the AVO trial, but it wasn't as bad/frequent as you are experiencing, Don't be surprised it if takes a few months for your digestive system to settled down after you finish venetoclax if that's what's responsible. You've taken the right step in having this investigated. If the colitis check is negative, talk to your CLL specialist about what else to try.
Neil
hello there , just a update. My cal protection numbers are at 400 and should be around 400. Going for colonoscopy on the 18th but he is thinking colitis from the meds. He mentioned treatments just forgot what he said. Put a call out to my CLL Dr and waiting on a response
Also, are you eating a fat containing meal/food before taking the V? It is more completely absorbed with fats. So if by chance, your particular body doesn't like the V touching the lower GI tissue, getting the maximum amount may help stop any GI irritation.
I had nausea and loose stools early into the V treatment when I had to take it in the morning. I had to adjust my diet to much more fiber, like steel cut oats in the AM and beans/fibrous veggies at lunch. Breads or starchy stuff was a no no.
I stopped the Venetoclax about 10 months in because of the side effects, the runs being one of them but more importantly heart issues with valve leakage. I did continue and finish a year of O or should I say 13 months. The other noticeable side effects were weight gain, itching, bone and joint pain and bone growth on the spine. For the runs the dr gave me cholestyromine powder.
Jack
Yes I have those issues. Especially the sudden onset. I had many stool samples checked to ensure nothing else was going on, ordered by my Cll specialist. The test raised no other issues so it was put down to the venetoclax. My specialist managed it from that point and although still having issues they’re much improved. I finish the treatment in February.
Thank you Neil as I have taken onboard the note that it can continue for a while after treatment is ended.
glad to hear that’s it’s over. Even though my blood looks good I tend to have a low grade fever in the evening. Another scan for me in February.
Hi, I have similar issues and yes it is the venetoclax. I now take it before bed with a slice of bread with peanut butter. I might have one bathroom run but my GI system has made adjustments once it became used to the meds. I am just about finished with treatment and I totally get what you are going through as it was somewhat similar for me. Also, try some yogurt. I think it helped with the active cultures. It really is worth putting up with but I can tell you that I don't feel that way when having to visit the bathroom. Good luck and Happy New Year!
My wife's GI doctor prescribed Metamucil to bulk up her digestive tract. The doctor also recommended stopping several foods that may trigger the run:
Food and drinks with chocolate, alcohol, caffeine, fructose, or sorbitol
Carbonated drinks
Large meals
Fried and fatty foods
Dairy products
Taking V at dinner time - immediately after eating - worked best for me. I worked with a dietician to relieve the digestive issues I experienced on V. I was also told to add Metamucil to bulk up stool which helped immensely. I also cut out nuts, seeds, and skins. Tomatoes, strawberries, and blueberries were a big problem for me. I peeled other fruits like apples and pears. I lost about 15 lbs during this time between running to the bathroom and just not feeling hungry. I had to start counting calories to make sure I ate enough each day to stop the weight loss. Everything returned to normal within two weeks of stopping Venetoclax.
Hello BigHT
Works for me. I give up, reply keeps getting removed each time I type period at end of a s
Something has changed in the HU software recently. I can't even see posts, on my iPad mini, using a browser, I get an "oops, look like that post doesn't exist" and am unable to access Help to report it. The "Help" link just spins on. I don't like apps on my devices and avoid them, except for bank, health insurance, utilities, and the like. If my main iPad ever "ages out", I won't be participating much anymore. Not going to sit in front of a computer unless I have to!
SofiaDeo, I've been getting similar messages on my phone. It's certainly frustrating but, you simply can't give up participating! You've helped me so much. Your input is precious. You're a valued fellow Cller 😊
I agree with Stamphappy. Your input and knowledge is invaluable.
Hello SofiaDeo
Looks like HU Support has been working on issues, mine now works
I'll check again, earlier this AM I still got the error message.
Nope, still getting an error. Sigh.
Is your iPad mini still supported by Apple? What version of Safari browser is used by your iPad mini?
I am on software version 13.2. Safari hasn't been updated in awhile, and that is on Apple. I suspect it has more to do with the fact I like high security on devices. I "prevent cross site tracking" and "block pop ups" except for certain sites. I won't use Goggle Chrome because of how they sell all the data. It's funny how I can enable maximum security stuff on a PC and not have problems, but when I do it on a tablet I do. I refuse to replace devices every few years, and think it's ridiculous that the phone and other device makers are trying to make us buy new stuff every few years. So I will just not use websites/places that won't allow an older device. At some point I assume I will have just a few banking, insurance, alarm, utility, and other apps on my devices, and won't be online so much.
I totally agree with you about the planned obsolescence of smartphones, particularly now that it's expensive, if not impossible to replace the battery.
Seems like you are onto something with respect to your observation about website security differences between tablet and PC. I suspect your tablet problem might be due to delays introduced due to the processing load on an older device. I've found the HU website tends to be quite sensitive to network delays. These can result in a red banner reporting a network related error, but often another incorrect error report occurs. See what happens when you stop what apps you can on your tablet, only have your router supporting your tablet and try accessing HU with your tablet at a time when the local demand on your internet service provider is low. If it works then, that would indicate your problem is due to difficulties rendering the page in an acceptable time. HU have been working on speeding up rendering times on different pages, but then they've used the time saved to introduce additional features, such as the far more consistent way that font styles, notifications and images are managed for both writing a post and writing a reply.
Neil
IMO it's more the newer HU software not supporting the older browser, along with my security. I can't use the iPad mini but the iPad (with one of the 15's software) still works. I can get logged in to HU fine on the mini, just, get the error message when trying to open a link. I am sure there is some kind of tracker put in to see what link I am going to, and that is probably triggering the error/unable to let me go to the link. Because if I shut that device off and just use the iPad Air, I can still get on.
HU do indeed do security checks on links.
I do sympathise as I had the same issues starting at month 8. I had stool tests followed by a CT colonoscopy after finishing the treatment, which was clear. Symptoms stopped 4 months after treatment finished but was never attributed to a specific drug. You are on the home straight - good luck.
Hi, I had the same problem with 400mgs Ventoclax a day taken daily for nearly a year. I am pleased to say it passed after I finished the drugs. I did have anti-diarrhoea medication but I did not use it as there was no doubt I was better off emptying my bowels rather than taking the medication after each bout and thus retaining this! The consultant encouraged me to take the drugs but I went with. I always took the meds mid late morning after having eaten a meal.
The reason your consultant encouraged you to take the anti-diarrhoea medication, is that if you have severe enough diarrhoea, you risk electrolyte imbalances and you also lose out on the nutrition needed by your body to heal as the CLL is removed. I was told that any more than 5 loose bowel movements daily needed to be reported, so that this could be managed.
Hi BigHT! My chronic diarrhea lasted 2 years after beginning a 3-drug trial (18 months after it ended): zanubrutinib, obin, and venetoclax. Both GI doc and infectious disease doc thought it was norovirus that my suppressed immune system could not fight. If not that then it was just how insulted my gut was by the trial meds. That was until a colonoscopy discovered some well-established nasty bacteria. Both docs thought it worth switching the blame to bacteria and gave me a walloping course of azithromycin. Et voila: a miracle. I have not had diarrhea for 4 months. It really helped that I was pushy and that these 2 docs would actually collaborate. I cannot tell you how wonderful it is to live without the diarrhea. Be pushy and good luck with this!
I see my CLL dr on the 12 so I will see what she says. I will see my GI dr again this week. He put me on a week of steroids to see if that helps until all the still samples come back. Thank you to all for the responses much appreciated
Try eating five bananas a day. It helps regulate your bowels. Eat non inflammatory foods, vegetables, fruit, and small amounts of protein for a couple days to see if it helps. Do not eat sugar or flour (bread etc) or dairy for a couple days, it may help. My pharmacist told me this and it has helped my lesser problems. I am not on VnO, so I haven’t experienced your situation
Hello & Happy New Years Everyone. I am a 13yr CLL Survivor & probably stg 4 since 12/20 when my intestinal pain began & I had to push for a Pet Scan. PET Scan showed Diverticulosis. That left sided pain every morning, like a baseball just sitting there. I increased my fluid intake & fiber but the pain progressed, demanded another scan & the Ultrasound showed Spleen enlargement with a strange gas pattern obscuring the view of the pancreas. By Sept 2022 I fought for a Cat Scan & that showed enlarged water balloons throughout my body. My new Oncologist was ready to start me on a slew of Targeted Therapy drugs without discussing anything with me & that was a complete turn off. He also mentioned that the $500,000 therapy would be covered by Federal Aetna Insurance.
I left there & went completely RAW Organic Plantbased Wholefoods & Juicing with Herbal Supplements. My inflammation was the first noticeable change which translated to weight loss (275-257 now). Then the 2hrs on the toilet has been reduced from small balls to formed stool. I still feel slight pain on the left side from time to time when my food is trying to digest. Now I feel so much more energy & can do more stuff for myself & exercise. I still struggle with 1 gal of water & 8hrs of sleep but I see real progress & my blood showed it too. Hemo/Plts up & WBC down. The new Oncologist wrote that he agrees with my W&W status after I took him to school as an old school RN of 30yrs. I am confident that he will do his job properly as long as I can advocate for myself. I choose this Purist Path because of my SDA Health Message Roots & I have seen GOD do miracles for my Mom as a 30yr Survivor of Malignant Stg 2 Breast Cancer with just a radical mastectomy & no chemo, radiation or tamifoxen. My faith is growing stronger everyday just like my body Amen🙏🏾
Hi CoachVera55 , that is so wonderful that you are seeing positive results from a more natural approach to your CLL and your determination to be more healthy in spite of your CLL and that you have an oncologist that will work with you using whatever methods work best for you ---.. what a great way to start off the new year with an encouraging report ----- keep it up and keep us posted on your progress ... ------ blessings , james Romans 8:38-39
My husband had a problem when he was on Venetoclax. It was pretty bad and he had to stop taking walks because he was running out of underwear. He was on a clinical trial at the time and they recommended him taking Imodium, which helped a lot.
As always, check with your doctor first to make sure any additional OTC medications are suitable for you.
so it looks like my cal protection numbers are slitly elevated. Should be around 200 , mine are 400. Next stem is colonoscopy in 2 weeks to confirm but he is thinking colitis.
Nail issues
Sinus Issues
CLL and sleep issues
Imbruvica and Food Issues 
Sinus issues
