Weight loss

[1reb]

I was diagnosed with sll and after biopsy was told stage 3a with swollen nodes above and below diaphragm. I have been taking acalabrutinib for little over 3 weeks now with minimal side effect. It seems that all of a sudden i have to try to eat as much as possible to keep from loosing weight. Normally i am 200 plus and for some time have been trying to get to 190 without sucess. Low 190s occasionally if really avoiding sweets, sodas and cutting back on meal sizes. Now I am 186 which isnt terrible but is lighter than i have been in 30 years and my wife is feeding me constantly. Big breakfast, reasonable lunch and big supper at night as well as regular deserts and snacks. Seems i cant get back to normal weight no matter how much i eat. My question is does the cancer cause weight loss or the acalabrutinib. Weight started dropping right after started taking the med.

[lindalou5]

When I started the BTKI, I lost 80 pounds in two months.. It was crazy. Never did know why that happened. Soon after tho, I gained it all back and have a hard time losing any of it now. I do not recall feeling sick, but I also do not remember a whole lot at that point. My white count was sky high, so maybe because of that time when the cells were being killed off and leaving the body, it does something with our degestive system...at least to some of us. I haven't seen too much on this subject and am also curious as to what causes that.

[Poodle2 in reply to lindalou5]

Similar experience here although I was on a different treatment. Lost a lot of weight in the first two months. I looked like a skeleton but I put everything back on very quickly afterwards.

[1reb in reply to Poodle2]

When you were losing weight were you still eating large meals. Did your doc say lost was from cancer or from the meds. I have a slender frame but if not careful i go to about 210. If i really work at it i can stay low to mid 190s. Since treatment started three and a half weeks ago i have now dropped to 184 and wife is constantly shoving food at me and just yesterday ordered some high calorie nutrition drink. Seems i am already putting in a lot of calories but slowly loosing

[Poodle2 in reply to 1reb]

I was eating the same amount of food, nothing changed in my diet. My mum was staying with us so I also had lovely home made meals. My doctor wasn't concerned and I had quite a hard time to begin with (treatment wise) so weight loss wasn't my priority at that time. I started to put the weight back on about two months in so didn't really have time to start worrying about it and before I knew it, I was putting weight back on. Have you spoken to your doctor? I think it will settle 🙏🏻

[1reb in reply to Poodle2]

Good to hear weight loss might be temporary. My wife has been getting a little bit panicked

[Bobby9toes]

I was diagnosed with SLL in January of this year. I dropped weight quickly from 125 to 113. I’m also on Acalabrutinib. Everything from that time seems a blur, but I remember I had no appetite and had a hard time eating. I have gained it all back and it’s a struggle to not gain more than I should. I feel back to my old self now and love to eat. I don’t know if the weight loss was because of the Calquence or the cancer. My doctor tells me I am in remission now, but will need to continue with the Calquence to keep it from coming back.

[Mahunny]

@everyone, same here and I was actually elated with the weight loss, however...it came back and added a little and now, hard to get it back off. I think that the early STRESS of our bodies being 'out of whack' and getting the diagnosis that we have the condition and all the searching for answers, seeing doctors, researching specialists, etc. etc. is (at least partially) behind the weight loss. Once we get on correct medication and start to get it (and maybe our brains) under better control, our bodies regulate and we gain it back. That's MY theory and I'm stickin' with it! Although I still wish I could be at that lower weight, I wouldn't go back to that point in history 😆