I have been on Calquence for over a year and my Cll had advanced so was put on hold Rituxan for 6 months treatment once a month and Venetoclax for 2 years. Starting having swelling in my lymph nodes again. So now getting referred for a possible bone marrow transplant. Was diagnosed in 2018 with the bloodwork results I have the fast growing.
I am not a medical person but I would think that if you are taking a medication and something is abnormal then this is an "ill affect." Last February I developed a strange cough with non of my doctors could help me with to solve. After 7 months I stopped taking my Brukinsa medication and a month later the cough stopped. When I got my next bottle of pills I read the paperwork and cough was now listed as an ill affect? I know my doctors did not do their homework to solve my problem. I am now taking my medication at 50% due and no cough. We know that with leukemia the immune system is affected. Something is going on inside your body and they better take samples to find out the problems? I never took those drugs but I would guess your body has reached it's limit and you are getting some good ill affects. Whether it is a listed ill affect or something new medical people have to use their sample results to find out what is wrong? I just learned that other medicines can affect other medicines and if you are getting prescriptions from two different pharmacies they may not know about the other drugs which may be causing an ill affect? Our body's may become weak and the strange affects can happen easier or more intense? Please get answers from medical people who "share and care" not "watch and wait" people. Celebrating Long life (CLL)
Yep .. that watch and wait is pure BS. They wait too long. You know your body. Speak up loud and clear
I’m definitely telling the transplant Dr when I have my consultation with him next week. It’s very frustrating not being heard by your own Specialist. Every appointment I tell him that I’m exhausted and been nauseous he never puts it in his notes
Are your symptoms related to CLL treatment or menopause?
Night sweats, nausea, and exhaustion can all be related to both CLL itself and its treatments, not just menopause. Given your situation—swelling lymph nodes returning and advancing CLL—it's worth having a deeper conversation with your oncologist about whether these Show Full Answer