Has anyone gained weight on Ven?
When starting Ven I had diarrhea and lost literally 15 lbs.
After a month, I became and remained constipated and have not only regained the 15 lbs.
but also an aditional 10 lbs. despite increased exercise and no change in calorie count.
Any suggestions or ideas would be most welcome.
Thx
skipro
Hi skipro,
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When I search on Weight gain, I get 251 past postings, healthunlocked.com/cllsuppo...
most seem to refer to Calquence, but a few mention Venetoclax - I haven't scanned more than the first few, but you may want to peruse more:
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
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Len
I lost a lot of weight on O+V in the first two months. Had diarrhoea too. From about cycle 4 I started to put on weight, put it all back on plus additional 4kg. Not sure if it is due to the medication or just not moving as much as I would if I weren't on a sick leave? I've been off V for 3 weeks, next check up next week. I will let you know what my weight is doing 🙂
My husband didn't gain weight taking venetoclax however he golf's all day and drinks 3 liter of water daily. Question- have you changed your diet?
It's not necessarily the calorie count, especially as we age. IDK how many "processed" foods you eat, or how many fried ones, but cutting those, calorie for calorie, should result in some weight loss. 400cal of chicken or meat or whole veggies/fruits have a different effect than 400cal of French fries, pastries, or ice cream. I did gain back the weight lost before starting Venclexta. I ate more melons and berries, lower carb vegetables except my chili beans, and increased my protein a bit. My bare bone nitrogen needs are about 35gm (0.28 gm complete protein per pound of targeted body weight) and I eat double that. Things like certain veggies and nuts have "protein" but they don't contain all the essential amino acids, in the correct ratios, to build muscle. Animal proteins and quinoa are the only foods that are closest to "complete".
Frances Moore Lappé's "Diet for a Small Planet" and related gives examples and recipes illustrating this concept. So seeking out to match your amino acids can help build more calorie burning muscle while ingesting less. I understand this concept has been further refined; researchers noted that certain amino acids ingested may not make it into the bloodstream. Newer recommendations are coming out improving on the currently recommended "Protein Digestability Corrected Score" of many foods(second link). As of 2013, some are advocating for using "Digestible Indispensable Amino Acid Score". I am not protein restricted, so haven't been overly concerned about "how much of what I am eating makes it into my bloodstream". You may want to check out the foods on Link 3, and try to get most of your protein from foods high on the list. As well as making sure you are eating more variety of "colors" in your foods.
I am confident the reason some of my relatives are overweight and have Type 2 diabetes is because they think a meal without bread isn't a meal, pastry is a part of breakfast routinely, and snack foods are processed stuff instead of things like a piece of cheese, a handful of nuts, a piece of fruit, or some crunchy veggies.
en.m.wikipedia.org/wiki/Net...
en.m.wikipedia.org/wiki/Pro...
en.m.wikipedia.org/wiki/Dig...
That is all very helpful.
I have been adding either plant based protein powder or grass fed whey protein powder to the water I drink. Firstly because I was told to stop diet sodas and secondly I was told to drink a lot more water with the Ven. I am not sure which amino acids are in the stuff and didn't really think about it until I read this post.
So I'm intrigued about building muscle mass and getting rid of my belly fat.
I do lift weights and do ab exercise and well as hike. I used to be able to scale 2500 vertical feet but in the months leading up to treatment and the first month of treatment I could barely make it around a 1 hour loop on snow shoes with little or no elevation gain then had to sit in the car at home for 20-30 minutes to be able to make it up the stairs.
Now I've been able to hike 500 vertical feet at about 8-9K feet of elevation but last night I was really dragging to make 400 feet after doing hikes 4 of 5 days in a row and weights on the other. So today and tomorrow I'm not doing either.
Interestingly, my kidney doc told me to eat no more than 30 gm of protein back in 2017 as I had grade 3 CDK. After FCR chemo in 2018 my GFR improved from mid 50's to mid 90's then deteriorated again after relapse to mid 60's. So I am left wondering if eating the 80 gms of protein my oncologist recommended is too much for my kidney function??
Thx again
skipro
PS there is a lot in these articles some of which I learned in med school but as an orthopedic surgeon have long forgotten other than we recommend high protein diets for surgical healing. Do you know of a quick and easy way to determine how much of what I should eat as far as optimal amino acid intake?
RDA for protein: 0.8 g/kg x _____kg = _____g
Or, you can figure out your daily Acceptable Macronutrient Distribution Range (AMDR) of protein = 10-35% of the total calories you consume per 24 hours.
You can figure out your basic metabolic rate to see your daily calorie needs to maintain your weight using an online calculator at myfitnesspal.com/tools/bmr-...
skipro -
I've gained a couple of pounds since ramping up to Venetoclax 400mg in Cycle 3. I'm also on Obinutuzumab and Pirtobrutinib. I'm in Cycle 5 now. Venetoclax ramp up started in Cycle 2.
Since the 400mg dose in Cycle 3, I've had much more fatigue, and really need to push myself. I think I eat a little more to fight the fatigue. It's also been so hot outside, I don't get a longer walk like I used to.
=seymour=
Awe I hate the hot weather. That's why I am living in our condo instead of our home down south so I can get up in the mountains in less than 15 minutes and hike or walk in the forests in the cool of the evenings!
I'm at 400 mg and the thought of doing it for 2 full years is overwhelming. I like you have had a lot of fatigue and have to go to heroic self-motivation to get out.
Has your doc ever talked about reducing Ven dose for side effects? I ask for 2 reasons.
1. A few weeks ago I could barely get out of bed for 3 straight days, then skipped the Ven and the next day felt so amazing I skied very hard for 3 hours. Once I restarted, the same fatigue hit the very next day and I had to put the treadmill flat instead of uphill and cut the speed and could barely make 1/2 hour instead of 1 full hour.
2. I'm also a physician and have talked to several others who have just dropped their Ven to 200-300mg and felt a lot better. They also say that 400 mg's dose recommendation was determined sort of randomly and more research is needed to determine the optimum dose.
I'm curious to see if the fatigue improves over time other wise I am going to ask to cut the dose or switch to Acala. because for me, physical activity in the mountains is critical to my psychy and happiness.
God bless and good luck
skipro
I'm not sure who they are who "also say that 400 mg's dose recommendation was determined sort of randomly and more research is needed to determine the optimum dose."
Per the FDA approval of Venetoxclax for 17p del CLL from 7 years ago; fda.gov/news-events/press-a...
"The efficacy of Venclexta was tested in a single-arm clinical trial of 106 patients with CLL who have a 17p deletion and who had received at least one prior therapy. Trial participants took Venclexta orally every day, beginning with 20 mg and increasing over a five-week period to 400 mg. Results showed that 80 percent of trial participants experienced a complete or partial remission of their cancer." If you check clinicaltrials.gov, for ABT-199 (venetoclax) there are 10 phase 1 trials and a further 10 phase 2 trials, evaluating dose effectiveness alone or in combination with other drugs for CLL treatment. Prior to the development of the more selective ABT-199 BCL-2 inhibitor, experience was gained with a less selective BCL-2 inhibitor Navitoclax - ABT-263) that had a significant off-target impact on platelets. pubmed.ncbi.nlm.nih.gov/232...
BCL-2 inhibitors are currently our strongest targeted therapy for CLL, but still require 1 to 2 years of treatment to achieve similar MRD responses to what's achieved in 6 months on chemo-immunotherapy. Even so, sadly three deaths from Tumour Lysis Syndrome from brave volunteers in an early venetoclax clinical trial threatened the continued clinical trial research of what's become the backbone of combination fixed term targeted therapy treatments. That trial was put on hold until the FDA approved the monitored ramp-up process up to the maximum 400mg dose used today. Even so, you'll note that it's not uncommon for people to stall during the venetoclax dose ramp-up and stay on a lesser dose than the full 400mg, due to a trade off between effective management of CLL with acceptable bone marrow toxicity.
Neil
thx for the info
I'm a doc and was at a zoom meeting with a group of docs that discussed the dosing as having been more of a random estimate than exact science
Apparently there are a lot of folks who end up on a lower dose for the entirety of their treatment
It's not a matter that the decided "dosing as having been more of a random estimate than exact science", but arguably the need for a paradigm shift of how dosing needs to be determined with novel targeted therapies that need to be used over longer periods. (I was aware that higher doses of venetoclax than 400mg were assessed in early clinical trials and my co-administrator has just reminded me that up to 1,200mg dose were tested.) So, further to my mention in my previous reply about the slower action of targeted therapies, arguably there may be a need to look for "treatment emergent toxicities (which) may appear later in the treatment course", as I've highlighted in this quote from a review article Determining drug dose in the era of targeted therapies: playing it (un)safe?
nature.com/articles/s41408-...
"In the traditional 3 + 3 phase I trial design [3], initially used to study cytotoxic agents, dose-limiting toxicity (DLT), rather than pharmacodynamic biomarkers, is used to guide dose escalation (Fig. 1). Three patients are first enrolled to a specified dose cohort. In the absence of any DLT, three additional patients are enrolled to a higher dose cohort. If one patient in the cohort develops a DLT, three more patients are enrolled to the same dose cohort. If no additional patients develop a DLT, that dose is defined as the maximum tolerated dose (MTD). If two or more of the six patients develop DLT, the MTD has been exceeded (Fig. 1). Notably, the MTD is determined already in the first cycle of therapy. Molecularly targeted therapies require longer treatment regimens than cytotoxic agents, and treatment emergent toxicities may appear later in the treatment course. While alternative phase I designs have been proposed for novel agents (Box 1) [4,5,6], the 3 + 3 design is still commonly used in chronic lymphocytic leukemia (CLL) trials (Table 1)."
Hence the need for long term studies from clinical trials, which we report on as they become available.
(With thanks to CLLerinOz for the reference)
Neil
thank you
Fun to learn about our disease and all the details that give us the best outcome with fewest adverse effects
skipro -
We have not discussed a dosage reduction. I'm on a fairly short term trial - 9 cycles (was 7 cycles, but the protocol changed) or Pirtobrutinib, 6 of Obinutuzumab. 7 of the 9 cycles are at 400mg of Venetoclax - standard 28 day cycles. I'm also curious to see if the fatigue changes once I finish Obinutuzumab.
Maybe I'm greedy. Maybe I have excellent support from my wife. But I'm inclined to stick with the full dose to get maximum effect. I'm retired.
I'll be posting an end of Cycle 4 results update in a moment. I'm really, really pleased with results so far.
=seymour=
Hi SkiPro I figured out finally whats works for my bowels. As I had horrible constipation. Metameucil did not work!!! Made things worse!
So what I do now and its worked consistently for the last two weeks.
1. I take two Senna -S stool softeners in the morning with breakfast. From Walgreens...(50mg Docusate Sodium with8.6mg sennosides laxative.)
2. Late afternoon to early evening I drink one glass of mirrolax.(1 cap full)
Works perfectly!!!!!!
Prior to that I tried metamucil, what a disaster.
Almost had to go to the ER for impacted rear end. Pharmacist at Walgreens said take the Senna S. Then I added the Mirrolax after I talked to my CLL team.
I started with double does of Senna s, 2 morning and 2 night. Double dose of mirrolax morning and night 1 cap full.
Then once I became unplugged and regular. I adjusted it down to each once a day as mentioned above.
Hope this helps.
John
john
Thx
I've been doing all 3, Metamucil for decades due to hemerrhoids
And the other 2 you mentioned
I'm unplugged and have so far lost 14 lbs.
I may cut out the Metamucil
Thx
Starting Ibrutinib plus Venetoclax Trial at MDA
venclexta cost 
Venclexta Question
acalabrutinib stopped working. Can switching to venclexta help?
