Is anyone dealing with CLL, Chronic Lymphoma Leukemia?

@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!

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!

@gramma62
I was diagnosed with it in Sept of 22 and do absolutely nothing special. Yet, my numbers remain stable. So much depends on the stage when it was diagnosed and the type of mutation we have.

@gramma62

So good to hear from someone who is approaching this cancer with nature's way and God's blessing. Thank you for giving this information. I pray for your continued health and God's continued presence in your life.

Hi Panevills

I am being treated for CLL and decided on Obinituzamab and venetoclax. There have been very few side effects and i am more than half way through treatment. While the first few infusions of Obin didn’t go well, the team quickly saw my reactions, hard to breath they stopped the treatment and restarted it slowly, after giving steroids.
Venetoclax gave me some nausea which was taken care of with Olanzapine.For the most part i have sailed into remission and am done infusions and just taking venetoclax to finish up.
The reason I decided to go with this treatment is because it can be retaken if I go out of remission which on average is supposed to be 7 years…Abbvie care looked after the cost of my treatments which i am so greatful for.

I was diagnosed January of 2024. I knew I had something wrong for at least 6 years before that. I've started drinking different types of teas to help with the fatigue and epedeama that has been sparatic. The CLL has caused my lymphatic system to not work properly. I think if I can manage my fatigue and epedeama, my life would be so much better.

Just started Brukinsa but I have followed it for years. I can't tell that I am taking it. It is widely prescribed and most people tolerate it well. Easy bruising is the most common complaint. Yes, it is very expensive but the company has plans that people can get that lower the price.