Is anyone dealing with CLL, Chronic Lymphoma Leukemia?

@panevills Having read the various comments here, my first question is to inquire if you are seeing a true CLL expert. Since you question if you even have CLL, have you had the various tests (FISH, flow cytometry, etc.) performed? I was diagnosed with CLL nearly 20 years ago and treat with CLL experts at Mayo. Over 8 years ago I went on Zanubrutinib (now FDA approved as Brukinsa) in a clinical trial. I remain on the drug today with very few side effects. "Watch and wait" is a standard procedure for many CLL patients, depending on various markers. Make sure you are getting the best advice before starting any treatment. Check out the list of doctors at cllsociety.org and at least get a second opinion before starting anything.

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 😓😞🤔

Your story is important and so very helpful. I was treated for cancer in my throat and neck by radiation. I am now recovering from all that and wanting to be able to eat and taste, again. My mouth is continually dry, already. The doctor wants me on Brukinsa, but I'm feeling so much healing and lift in energy, I'm wanting to see what this 83 year old body can do. I've never had a medical condition before and take no medication. Throat cancer showed up after severe infections from a tooth implant and then root canal. I question the CLL diagnosis. In a couple of weeks I'll have more blood work and a PET scan. At that time I'll decide if medication is needed. My doctor does not approve of my decision. But, all has been decided through prayer.

@minnesotajim
I have taken Brukinsa for 15 mos & bruise extremely easily, have dry mouth, dry nails & my hair breaks off. Also, I have swelling & Purpura on one foot & calf. It has really worked to bring down my white blood cell count & lymph lumps.

Hi. I'm 51 & was diagnosed with CLL in 2019 (although I'm pretty sure I've had it longer than that), I'm currently on wait & watch with blood tests every three months. The CLL has made me lactose intolerant & my lymph nodes are massive ( they are very visible). Apparently CLL can make you prone to other types of cancer & in the last year I've had 5 skin cancers cut out. I'm not on any treatment because my doctor says my blood numbers aren't bad enough to warrant it. Is this normal or is it bad management of my condition? I want to start some sort of treatment to reduce the size of my nodes as it's really starting to bother me. Should I stick with my current cancer GP or go private to get things moving? Any advice would be greatly appreciated.

I was diagnosed with CLL, then had a bad reaction to dental work and developed cancer of the throat and neck. I had 15 radiation treatments and after much pain and discomfort have a quieted mouth, dry mouth, a sore tongue and a very little sense of taste. My doctor prescribed that immediately go on Brukinsa as the radiation completed. I have not started the medication. First, I needed to contend with THE MOUTH. Second my energy level is returning and I do not have the light headedness and slowing energy I had previously. I have one swollen lymph node under each arm. I stopped 3 months ago my one plus glass of wine each evening (lots of research about alcohol and cancer.) I'm hoping for two more weeks, then I'll request a blood test and most likely the drs will want a PET scan. I'm trusting in God right now for healing.

@johnwhitley the “CLL SOCIETY” has a program for expert second opinions. If you haven’t already seen it, you may want to check it out. Good luck and God Bless

@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.

Hey there, so sorry to hear. I was diagnosed with CLL back in March of 2023. I drink green tea and use green tea capsuls, grape seed capsules, Berberine, Reishi mushroom and vitamin D3 for far my numbers are stable. I’ll be praying for you. I pray you find Gods peace and comfort. He has given me much peace!

@johnwhitley Hi, I was dx'd May2024 with CLL stage 4 - I had high WBCs in my blood and bone marrow, (barely) enlarged lymph nodes, and a slightly enlarged spleen. They started me on a BTKi drug called Zanubrutinib (pills twice a day) & it has worked well with no side effects.

There are SO MANY treatment options to consider - which one will depend on your specific situation. A second opinion is a great idea. As noted by @ftmolloy , the CLL society offers them for free – I'd strongly suggest you try that route as a next step.