Is anyone dealing with CLL, Chronic Lymphoma Leukemia?

That’s great to hear. I was diagnosed in June 2024. I have chosen to enter a clinical trial where treatment is started before symptoms. I just had my 3rd obi infusion with no reaction or side effects. I start Venetaclax in 2 weeks. Feeling great and hoping for a long remission.

@johnwhitley how come your GP hasn’t referred you to a hematologist/ Oncologist. You should. Be seeing a specialist. I have AML now. 9 years ago I was diagnosed with MDS. I was a watch a see. My hematologist checked me every 6 minthe them every 3 months then gradually it progressed to
AML. I had a bone marrow biopsy several
Times over the years but the last one came back border line AML but still my counts were unusual but she started me on treatment called the 7+3. You go for chemo infusions in your belly 2 a day for 5 days and weekends off then Monday and Tuesday. I also take a chemo pill every day and the rest of the week when my infusions are done. I was put on vidaza and ventoclax. This is a new treatment for seniors who can’t have a bone Marrow transplant which is the only cure. The treatments are not bad. I mean my stomach is sore by the end of the week. But no nausea snd I eat well. It is not a cure but as long as the treatments work you can live longer. Also they can give you more time in between treatments from 4 weeks out to 6 weeks. They can also cut back on the infusions from 7 to 5. The idea is to put it in remission. After my first cycle I had a bone marrow biopsy and I was in remission. But I will always be im treatments. They have to find what they call the sweet spot where you do less treatments and more time in between and you stay in remission. I have the best care in oncology. They take Beth good care of me and we laugh a lot. I call it going to my new job. Good luck.

@jacklyn I go see her once a year. I have blood test twice a year.

I've also been diagnosed with CLL since February 2025. They first picked up that I had a problem was back in 2015 but it wasn't severe back then so they kept an eye on my bloods every 6mths up until February this year when I found out that it was stage 4 and I needed medication I'm 67yrs old now.. I went on to have a CT Scan more blood tests then I had to have 2 blood transfusions and 2 bone marrow biopsies in June this year and blood tests every 2wks. The first blood test was ok but after the 2nd I had to have a further blood transfusion in July, and the same in August then in September I had to have a further 2 blood transfusions. I still have blood tests every 2wks but since September I've not needed any further blood transfusions thank goodness. Im still getting my bloods tested every 2wks for now until they're satisfied that the medication is working. The only downside is that I was told that it can't be cured but is treatable which is why I'm taking Brukinsa, Allopurinol everyday and Co-Trimoxazole 2tablets daily on Mondays and Thursdays, as of yet the only side effects I've had are unexplained bruising and my hair thinning (not to the extreme where it's noticeable) and dry mouth. I don't know if there are any other side effects I can expect as ive only been on the medication since June. I don't have to pay for my medication as prescriptions are free where I live in Mid Glamorgan, South Wales United Kingdom so I'm lucky. If anyone knows of any other side effects that could arise with this medication could you please let me know. Thanking everyone in advance 😓😞🤔

@tezy15plus5 My husband started Brukinsa this month after 3 years W&W, he takes Allopurinol once a day and Brukinsa twice a day. Tomorrow is his first CBC test, hope his WBC is getting down after been 201 at the beginning of the 2026. He ended up in the hospital for a week with WBC 237 at the time of admitting. On top of it his CLL» found its way” in to his brain:(
So far no side effects but it’s been only 9 days since he started medicine, we have a big hope for this targeted treatment.

@sveta25. I have found Brukinsa to be amazingly helpful, as I was recovering also from radiation from throat and neck cancer. My CLL was slow in coming - might have had it for a couple of years. I was slowing down from a very active life, but considering my age expected that to happen. The blood test told the story.
My next oncologist apt. is the end of this week, after 2+ months of Brukinsa - I feel normal and have reinstated all my activities and exercise. We are praying for a much improved report from my blood tests, possibly normal. Be positive, keep faith, and talk with God.

My partner has been taking Brukinsa for two years with few to no side effects. It has stabilized his blood count and requires only monthly blood draws and a subsequent appointment with his oncologist /hematologist. He pays a hefty copay at the first of the year ( which has been going down) and then no other payments through the year. Hope this helps.