I'm happy with the positive results of the Gazyva/Venetoclax treatment I started last spring. I am less happy with the increase in the severity of side effects in the past few months. Nothing intolerable, but it is challenging. I don't have the strength or stamina for my regular exercise. I can't do much of anything past noon, and when I push it for a full day it puts me out for the next 2.
I do get sick a lot, and I am accustomed to rebuilding strength and stamina through daily walks or water walking at the rec center pool. But now, rather than giving me energy and building up my strength I just have to turn around and drag myself home half way through.
The nausea has worsened and like others I've read here I choose daily whether I want the nausea or the side effects of the anti-nausea meds that also sap my strength.
I did ask my doctor if a decreased dose was a possibility, and he asked if I can tolerate the full dose for another 3 months in hopes of a good result with the MRD testing in June. I agreed, and the treatment so far feels like an investment that I don't want to gamble with by reducing the dose. Still. I'd really appreciate hearing from others who may have experienced increased side effects well into treatment with Venetoclax. Does it continue to get worse?
Thanks for sharing your experience and/or words of encouragement.
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DMary
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Hi DMary, I'm sorry you are struggling. I finished the same treatment in June last year. I did have lots of side effects and probably like you, I could cope with them and live with them but sometimes it wasn't easy. My GI issues and stomach cramps were really bad, I had really sore gums for about 2-3 moths, heartburn that would stop me from sleeping, severe neutropenia, I was sick a lot, a cold a month, flu, gastroenteritis 2x, sinusitis, this would effect my energy levels ...You are almost there. Keep going. It's only 3 more cycles left. My side effects did start to get better towards the end of the treatment and cycle 12 was a breeze. I remember my consultant joking about it as I had to endure 11 cycles of struggles to finally feel like it was all fine in the last cycle. It will be over soon. It isn't easy but it will be worth it. I'm wishing you all the best.
Hi,Everything you have written is true for me as well. My last bottle of Ven for April was delivered a few days ago. Tested a few weeks ago for MRD and it came back negative. So that info motivated me to not cut back or stop Ven.
I remember during the first couple weeks of O and V. Wondering and praying, how in the world am I going to make it through a year. All the side effects were really no fun.
I did not want to waste a treatment by quitting it, yet I was misserable. I hoped and prayed the side effects would wane! I can say that over the last couple months the side effects have lessened.
All the best to you, your not alone in your struggle. The treatment does come to an end. The good news is that it is quite effective. Giving many here years of treatment free living.
Keep your eyes on the prize. I keep my side effect drug remedies close by.
I am on a reduced dose of Venetoclax since ramp up because I experienced a serious reaction going from 100 to 200. I have been on 200 mg and my doctor is not worried that I will not achieve UMRD. My latest Clonoseq test came back with excellent results. Neither did I finish all the infusions. My doctor said the Murano trial showed no significant difference in outcome he said.
Dose reduction occurred in 45 of 194 (23.2%) of patients in the MURANO study and had no statistically significant effect on PFS or OS. The number of patients requiring dose reductions in MURANO is similar to the 29% reported in the Roeker et al. real-world study of venetoclax.30 Furthermore, the real-world studies of venetoclax support the findings from MURANO that dose reduction does not result in inferior PFS
My question is … if dose reduction had no statistically significant effect on PFS - then why do onc strive for 400 mg daily of V? Why can’t we just do 200 mg and call it a day?
When I asked if this would prevent me from reaching uMRD, my doctor told me that it might mean a shorter remission but even that is not a given because the data is not available yet. I think because this still a relatively new medication they adhere to the guidelines for best outcomes according the manufacturer.
Horses for courses I think. The practice here in New Zealand is to fund the full dosage (400mg) for 2 yrs only. Most people achieve remission in that time.
In my case, I started a clinical trial of Venetoclax monotherapy in April 2018. I had such severe neutropenia during the first 6 months (neutrophils down to 0.3 at one stage) that my dosage was reduced — initially to 300 and, then in November; to 200mg At this point I was in remission but I’ve continued to take 200mg daily ever since. I’m about to start year 7! I’ve just returned from 2 weeks in Japan where I walked a total of 160kms. I saw my haematologist today and he remains very pleased with rge state of my health
hi I finished Oand V last September and have had good results the various blips along the way seem to be something lots of people have experience being tired, nausea, stomache issues all hard to cope with but hang on in there you are almost at the end there are so many reports of excellent outcomes . I tried all sorts of things with the nausea I tried when I took the medication after or before meals I even resorted to sea sick bands ( not sure if they worked but I felt I was being pro active 😂) start the countdown like many on here I wrote on my calendar in big letters LAST TABLETS YEAH !!! Good luck keep at it it will be worth it
I am in month 7 and side effects are increasing. Like you trying to put a brave face on it and carry on but its hard. However, last week Dr said if my ANC tanks again (I now inject once a week G-CSF)) then he is moving me to 300 as and I quote 'You are now in remission...' Who knew? Those words were cheering tbh. I am not sure if this reduction would help all the other issues I am facing but maybe. Anyway the upshot is he feels it would not affect the efficacy or the final outcome.
Steffi, I was neutropenic the whole year while on this treatment. I was on GCSF shots weekly, sometimes 5x a week, sometimes 1-2x a week but I was never able to stop. As long as you are not getting repeated infections, there might not be any need to lower the dosage. Worth discussing it with your doctor? I never understood why some doctors stop and pause the V and even lower the dose and why others just keep going with the support of GCSF but both ways work...
I don't think the course of any of these treatments are one size fits all - and I have had faith in my oncologist through the first tx and I trust him this time as well. (He's never been dismissive.)
Agree, very true. It's interesting to read about the different ways the specialists deal with this issue. I never questioned my doctor either, she never mentioned lowering/pausing the dose and was in support of maintaining a safe/safer neutrophil count by using the GCSF injections, I just went with it as she has my absolute trust. There's no one fit for all.
Hello DMary. I have just started Cycle 8 so was very interested in your post. I am finding now that I have fatigue now and having to acknowledge that I cannot do as much as I used to in a day. It is very much a case of the spirit is willing but the flesh is weak. I do one thing and lack motivation to do anything else. Psychologically, I find this difficult to accept. I think it is exacerbated by having had Covid for the first time in February. I have been told that I am not resting enough and I am now making sure that I do. I have unfavourable markers so will go the entire course and am just hoping I will achieve MRD. I have been lucky in that I have tolerated the treatment well apart from occasional Neutropenia and it is only since Covid that I have felt so tired and lacking in motivation and feeling that I have lost my va va voom!
Thank you for responding. This sounds familiar. This increase in symptoms followed what seemed like a mild case of covid. (I'm fully vaccinated and careful but spent the week of Christmas with my mother in her memory care room at an assisted living center as she passed with hospice support.) I just never regained strength and the digestive, and stamina symptoms got worse. The doc says there's just so much they don't know yet about the longer term effects of covid in even healthy patients. Sympathetic but unhelpful.
I am fully vaccinated too, very careful and was shocked when I got it. I had the antivirals and felt very buoyant when I was on them. Although like you, it was mild ish, I had strong positives for a month. I was beginning to think I as never going to test negative!
I am so sorry for your loss. My mum died in 1998 and I still miss her.
I’m sorry about the side effects and hope you are able to hang in there for the next three months. Hopefully, the side effects can be managed in the interim.
I do want to say it’s nice to see you posting again. Just wish it was under more agreeable circumstances.
Thanks, it's good to be back. The responses have been supportive and helpful and it's good to see familiar names like yours! I have been inactive for quite a while, but never stopped "lurking".
😊 many times it is a good sign because there are not pressing questions to be answered and people are just living their lives. Always good to know where to come for support when you need it!
hi, I’m using the last of my V tablets this month. I started V and O in April 2023. I’ve been lucky, little nausea and fatigue. My main issue has been body aches, back and hips hurt and upper abdomen as well. I had my first bout of Covid (vaxxed many times) in December and my feeling is my pain and bowel issues haven’t recovered from that. My hope is to be better when V is done. What I always remind myself of is….if I had a to choose a cancer, this one is way better than others…my husband had pancreatic, friend has uterine, brother bladder….and I’m 76 so also remember all those very young people in the chemo lab and am grateful! Good luck, stay positive….this too will end!
Thank you. This is so true. I belong to an in person support group for women with cancer and so much of what many women there endure puts my CLL journey in perspective. I'll take semi toxic meds, discomfort and moderate distress over chemo, radiation and repeated surgeries any day.
Have you tried adjusting the time of day for dosing and a diet relative consideration?
By stating diet I do not mean weight loss, rather I am referring to a more agreeable G.I and nutrition managed diet. Are you familiar with CY3AP inhibitor influence in the diet. CY3AP can cause a pseudo overdose with venclexta.
If you can sleep through the height of the nausea cycle it may improve not only the nausea experience during the day, but you may seem less fatigued if you can get a consistent rest cycle established.
And, on occasion reward yourself with a 1 hour massage and listen to Vivaldi "The Four Seasons".
I experiment with taking it with different foods and times of day. First thing in the morning is the worst regardless of what I eat. I'm an early riser, so I've given this lots of experimenting. What seems to be best is consistent midmorning with bland food but success with avoiding nausea and distress is hit or miss. I'm going to try the cream of wheat suggested earlier as oatmeal is sometimes helpful. I follow a flexible FODMAP diet for other issues and that seems to cover eliminating problem foods. And you're right, music helps everything!
I had to take it at the end of the day, 1/2 hour after finishing my last meal, and not eat anything else the rest of the evening. And I needed some fat in that meal. A cup of buttered/olive oiled mixed vegetables was my go-to that seemed to help me personally.
My experience was similar to SofiaDeo. I took the V in the late evening after dinner. Light meals for breakfast and lunch, and replaced the daytime trans fat/salty, and high sugar snacks with fresh fruit and vegetable. No soda pop, mostly water 70-80 oz daily, and some fruit juice/tea/coffee in moderation. I got as much cardio exercise that I could considering how I was feeling each day.
The heavier meal was the evening meal, yet a balanced meal and a good two hours before bedtime (7:30PM - 8:30PM). Bedtime around 10:00PM.
The first few days of switching things up usually give me false positives. This effort took me a few weeks to notice a considerable measure, yet once I worked it out, it kept my nausea/energy level acceptable.
Remember, the CY3AP can cause the medication releases to be higher than intended and the side affect experience more intense.
My diarrhea, nausea and vomiting did increase as I proceeded though V&O treatment, but I toughed it out to the finish and glad I did. My doctor felt it was important to do full 400 mg dose, so I never discussed dosage reduction. Blessings.
Your description of the fatigue from Ventoclax was spot on, I wish you the best getting through the next three months. I have another 15 months, but keep hoping my body will adjust to it.
My doctor decreased my V dosage to 200mg a few months after I started V as my numbers were so good by that point. She stated V is a very strong drug . I'm almost 3 years after treatment and still my numbers are good. I started feeling really good about 2 months after I was done with treatment. I hope that helps.
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