I have CLL

You certainly aren't alone in that! We have other members who live with CLL and share their highs and lows: https://blood-cancer.com/stories/immunotherapy this is a good place to start. Hopefully it will make you feel less alone. I'm not sure how many take Brukinsa but you can ask and definitely get some responses. If there's anything else we can do to help, let us know! Keep on keepin' on, DPM

Thank you for sharing that you take Brukinsa. I have CLL/ SLL & will start soon. I am interested in what are your experiences with it & I truly hope you’re making out well.

I have not had any treatment for my CLL, I also have Scleroderma and RA are a both autoimmune disease. Some people don't know what Scleroderma is. It is an incurable autoimmune disease. When I was diagnosed with CLL in 2022, I decided not to take the chemo pills I was offered due to having two autoimmune diseases I believe that's a chemo could kill me before the disease itself. Unfortunately it has progressed fast. I have been on home hospice since November 2025. The pain that I'm in is excruciating not only from the scleroderma in the ra but also the CLL. I have severe nerve pain in my arms and hands and fingers that feels like want a part of your body falls asleep and you have that feeling of pins and needles. It's 24/7. It never stops and all. It's starting in my left arm and hand just like you did on the right side. The main doctor from the hospice that I am on is coming out. Just see me today. I've had four falls since being on hospice last November before I had only had a couple falls in my life. And I'm also going to have a home health aide coming out to help me bathe three times a week up until knowledge and you feel like I needed the help but obviously I do because I fell Friday night after getting out of the tub. It's hard to determine my pain due to the scleroderma and the ra, but I believe that this nerve pain that I'm experiencing is due to the leukemia. I will find out tomorrow today when I speak with the head doctor of the hospice program that I'm on. God bless you all that are dealing with any kind of cancer. This is the fourth time in my life I've had cancerI'm going to be 66 this month. I've had cervical cancer at 22. I've had two lung cancers and now CLL. My brother passed at 53 years old of lung. My father had multiple myeloma and his two sisters one had lung cancer and his other sister's cancer started in a tumor on the side of her face. So there's a lot of cancer on my dad's side of the family. My mother was adopted and she passed of a stroke so I'm not sure what the history is on my mom's side.
I do my best to stay as positive. Everyday is possible. Some days are better than others but I really think that's key. And I also have a very strong faith and that really helps and I belong to a scleroderma group of wonderful people I have made so many new friends and that really helps because when you have scleroderma that is the systemic that is inside your body and with the CLL you can't tell that I'm sick. You look at me and you think oh that woman is not sick but let me tell you I'm very sick. But keeping a positive attitude Even on the darkest of days helps a lot. It's not easy and I've had to work very hard at it. I still have some dark days but I don't let it go on like you did in the past.
Again God bless you. All good are dealing with any kind of cancer. And thank you so much for reading and listening to me ramble on here.