Joining the Group

[tleachhsv]

Hi, Folks.

I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva.

So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues.

I honestly feel very confident that these new treatments and the clinical trial studies are going to keep SLL at bay for the rest of my normal life. The first few weeks after my diagnosis (PET and biopsy of lymph node), I dusted off my old chemistry and anatomy and read every clinical trial I could find online. I am very blessed that the old FSR chemo treatments, prior to 2014 or so, are no longer needed to keep SLL in check. My anchor point is the study where 87% of CLL/SLL patients are still in remission on Calquence after six years.

I have a family experience with cancer. Our son had osteosarcoma at 7 years and I was with him as he had just about every chemo available, and ending with a curative stem cell transplant for secondary AML, at the age of 14. He is 30 now and doing fine, but he was slammed very hard with every chemo agent out there from the age of 7 -14. So, by comparison, although SLL is serious and some people have complications that become dangerous, I feel blessed and confident.

Having said that, I am still worried about getting an infection, RSV, Covid, Flu, etc. and sure don't want to end up on a repirator in a hospital. I read the story of actor Jeff Bridges, who also has SLL. He almost died from Covid, spending weeks on a respirator and finally toting an oxygen bottle around until he finally recovered. I wonder if maybe he was never vaccinated for Covid? I had Covid in June of 22, just three months prior to my SLL diagnosis. Even in June, I had swollen lymph nodes on the back of my head (the occipitals) My family Dr. thought they were due to stress. But he changed his opinion in August, when my neck (throat area) nodes were swelling so much that my iPhone face recongnition no longer worked! Dr. sent me for a CT scan and then after the scan results showed a spot in my lungs, referred me to a local cancer center for PET and biopsy. By the time I got my diagnosis, I was pretty sure that I had some kind of Lymphoma. I was sure it was Large B cell or something that would require heavy duty chemo. I was actually so relieved to learn that what I have is controllable with an oral pill and a short term of infusions. So far, after three months of Calquence and 4 Gazyva treatments, I am suffering very few side effects (headaches, diarrhea, fatigue, mild itching in various places).

Hoping that the effects are not cumulative and hoping to avoid any infections. I am looking forward to learn and to share in this group.

Best Regards,

Tom

[SofiaDeo]

This community is not active, please join the active one.

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[FloridaGal2 in reply to SofiaDeo]

With CLL forum being shut down wonder why this one for US patients is not active..