i have just finished my sixth week on Venetoclax. My initial bloodwork results are astoundingly good, seems it has taken us 8 years to find the right drug. Rituxan over six months starts this week, which I have had three times before, but never in combo, always as a single agent treatment.
My question is weight gain on Venetoclax. I am sensitive to this, I am down 51 pounds and I rather like the new me. My weight the first few weeks was down a pound or two. But it has taken an odd shift since I got to 400 mg and I seem to be up about 4 pounds. Wondering what others long term results have been. I am 65, male, disease discovered in 2012, treated constantly with one thing or another since except for much of 2015, 16 and 17 I was quiet.
Have you seen a weight shift? Positive (down) or Negative (up). If you can suggest pounds up or down and % of your weight when you started would be great. Make it an informal survey please. I’d be happy to aggregate results and give a group number average.
Kevin
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KevinCLLITP
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I noticed a tendecy to gain weight when I first started Venetoclax.
I (have been dieting for 60 years and) told my CLL expert doctor that I had to cut my calorie intake by 20-30% to keep from going over 200 lbs.
Now in my 5th year of Venetoclax, I suspect that I am consuming 10% less calories than while I was on Idelalisib, but it has become my new normal.
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I've had weight control problems since I reached 200 lbs at 13 years old. For University Crew in college, I was down to one meal on alternate days to maintain a 190 lb rowing weight. I gained weight in US Marine Corps basic training, after the rowing season. I became a "Lifetime Weight Watcher" twice after slipping into bad habits (eating normal 3 meals per day) and gaining 40-50 lbs as an adult.
I topped at 302 in high school and dropped to 212 in college and then about 238 when I got married 39 years ago, which is about where I am now. After 12 years of being on the road as a Management Consultant I was nearing 290 and 75 inches tall. I’ve lost a couple of inches and 51 pounds or so, but I am not relishing getting back above 250.
I lost weight on a month in China ! I only ate things I recognised which ended up as lots of asparagus and aubergines. I don’t consider myself a fussy eater, but when live snakes are brought in for the guest I suddenly became very suspicious of every meal. Chinese wine is also an acquired taste 🤔
I have also never had an issue with weight gain and as I near the end of my year of Venclexta, I’ve gained 15 pounds. My activity level remains good and I watch my portions. It’s troubling and I’m trying to focus on the positives of the treatment, but the weight gain is significant to me.
I experienced a slight weight gain during my O+V treatment. About a month into venetoclax I started to notice the increase, and at about 5 months I had gained 10 lbs. I also experienced mild bloating and abdominal pressure. I discontinued treatment 8 months ago, and I am now starting to see a return to my normal weight. I have lost 5b lbs over the last two months.
I attribute the gain mainly to having to eat differently in order to minimize nausea, and the increase in hydration.. I had to take venetoclax in the evening just before bedtime, and this meant eating dinner late. It is medically documented that eating large meals before bedtime can slow metabolism.
In addition, I am being more active now that I feel better. I can also regulate the hydration more effectively without the drugs choking my kidneys.
I want to stress that these conditions were manageable for me. Compared to what I have viewed with others on chemo treatment, I have no complaint.
My initial results on Venetoclax are honestly stellar, better than anything I have taken over the 8 years that I have had CLL and this would be the 9th time I have had some sort of chemotherapy. I am attuned to the weight gain but glad my system allows me to take the drug in the morning. I get a nice bowl of MultiGrain Cheerios with Whole Milk and eat that and take my drugs and it has seemed to go well. My white blood count has dropped from 183 to a normal 8, and my Abs Lympocytes are down to 4 from 140, and I have just gotten to full 400 mg dose. As of this morning, I am up maybe three pounds since I started. During ramp up I did go up two down three but it has been up, up and up the last couple of weeks. Maybe I need to reduce the size of my bowl of Cheeerios!!
I have had Rituxan 3x (4x each) as a single agent and never had weight gain, had a few other minor issues but never weight gain. This will be my first time having Rituxan in a combination therapy, and it will be 6x over 6 months I guess.
I am nearly 64, have been treated on and off for 12 years with FCR, BR, Ibrutinib and recently with Venetoclax and Gazyva (a newer form Rituxin). I lost 80 lbs during my treatment of V. I had a very difficult time with the V. After I finished the ramp up to 400 mg, ended up in the hospital with sepsis and severe pneumonia. But once I started the Gazyva, and a 25% dosage of V, everything turned around. After the 12 month treatment, I am happy to say, I am now MRD Negative and have been for the past seven months. So yes I did loose weight but it was temporary. I hope your ultimate results are excellent.
Once a month for 6 months. Immediately after the infusion I had the jitters and horrible memory. The next morning i was normal (unless you ask my wife) and had no side or after affects. My wife drove me to and from the infusion. I really didn’t have any issue with the Gazyva. I had a lot of issues with the Venetoclax during the ramp up.
i have had Rituxan multiple times and have had really good results and not much interaction from it. The worst was a clinical trial with Idealisib and Ofatumumab, which I have written much about and nearly died from, and my most recent foray with Ibrutinib and Acalabrutitnib, which gave me serious cardiac issues. My ramp up to Venetoclax has a been great, I am feeling really good but I was coming off of Hemoloytic Anemia when I started it up so I was pretty low. My blood counts have to be described as stellar, as my WBC has come from 183 to 7 in six weeks into normal range. My lymphocytes are 3.7 after coming from about 140, just a little high. I start Rituxan infusions on Tuesday, so we will see where we go from here, but after 8 years I finally feel like we found something that is going to work and isn’t going to cause me to have all sorts of side effects.
I had lost close to 20 pounds during the 45 days I was on Ibrutinib and the 3 months in between ending Ibrutinib and starting Venetoclax. (I went from 160 pounds down to 142 pounds.) I had on going diarrhea which did not end when I stopped taking Ibruitinib. I came to the conclusion that nothing stayed in my digestive tract long enough to absorb many of the calories, so to keep from dropping lower, I started eating higher calorie foods.
When I began taking Venetoclax, the diarrhea continued for about 2 more months, but then it stopped (hurray), and my digestive system pretty much returned to normal. Unfortunately, I did not adjust my eating habits, and my weight started climbing. I have gained back all of the 20 pounds plus a few more. (Ugh!) Obviously my high caloric intake didn't help, but I felt that my body was telling me that Venetoclax was a better fit for me and not wreaking so much havoc on my system.
Hi Kevin.... I have been on Venetoclax for 15 months now. I have gained about 6 lb. and have uncomfortable abdominal bloating. But my blood work has normalized, my enlarged abdominal, retroperitoneal and perivascular lymph nodes have melted to half their previous size and I have just recovered from COVID-19. So, in spite of these temporary side effects, I feel lucky to have this treatment available.
Hi yes approx 6lb and it hasn’t gone ( although you could say I don’t try ) Just glad to be here ! 5ft8”and 12.5 st ! I will hopefully sort myself out when I’m off the drugs 🤞
I am new to Venetoclax. It's my first treatment. I was diagnosed in 2017 with CLL/SLL since it started in my bone marrow/blood and spread to some of my Lymphnodes during the 6yrs I went undiagnosed.
When my Lymphnodes noticibly increased and were causing problems...mainly in my abdomen and on the side of my left breast (making me more vulnerable to breast cancer), they started me on Venetoclax in the beginning of May ... Spending the day of increase and overnight at the Hospital for monitoring for TLS.
I noticed that my belly was starting to bloat at the 100mg dose and uncomfortably so at the current 200mg dose. I've been having high uric acid levels and prescribed a med to help reduce the uric acid. At first I lost 6lbs from nausea but have gained 8lbs since starting the 100 and 200 doses. I will be starting 400mg tomorrow morning. I see the Oncologist Tuesday and will discuss water gain in belly and now left breast. They are moving up the start of Gazyva and will be weekly treatments vs the previous every 28days. Glad I'm not alone in the water gain.
I’ve been on Venetoclax for 11 months now after failing with Imbruvica and its derivatives as well as Zydelig. I couldn’t be happier, to look at my CBC scores, I look like a normal person. My platelet count last week was 139, yes 139, as compared to single and low double digits for almost 7 years. It has come with weight gain of about 8 pounds, which I think is pretty typical, and maybe its a tad more located in the gut, its pretty much an all over thing.
I am also having high uric acid levels and now I am on 200 mg of allopurinol and probably going to 400 mg. I had a problem which started while I was on Imbruvica in late 2018 and 2019, which was originally diagnosed in the left foot, then left ankle and then right foot as cellulitis. It gave me problem after problem until we found a mass in the right foot which finally had to be surgically removed because it was almost 4x3x2 cm between two toes. It turned up as tophaceous gout which is also apparent on my left ear.
Makes me a bit mad that after dealing with everything, we weren’t really managing my uric acid levels at all, and now I have had to have surgery, and finally, I have got to take 400 mg of allopurinol as soon as I can tolerate it.
I can understand your frustration. I was having excruciating pain in my lower left leg and ankle for a couple years and my Oncologist dismissed it as degenerative.... Which I have never known to start suddenly.
I didn't find out it was Gout due to high uric acid levels until after the Venetoclax increased the uric acid further and increasing the gout pain.
They have me off and on the Allopurinol... According to my uric acid levels.
Besides some bothersome.. but mostly manageable sideaffects, I agree that Venetoclax is definitely a miraculous game changer.
I gained about 10 pounds in the final six months of Venetoclax treatment, but I also broke my foot during that time and was under lockdown (thus not the usual level of exercise) so I can't discern how much of it is the medicine and how much of it is just me
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