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Had CLL for about 2 years, Dr is now thinking of treatment

Posted by twodogmom @twodogmom, Aug 2, 2023

I was diagnosed August of 2021 with CLL, IGHV mutated, 13q14 deletion, no other chromosomal abnormalities. I'm now 64, female. I had an enlarged lymph node by my shoulder so they did a scan and found a larger one (45mm at largest dimension) so biopsied both. Came back as CLL/SLL not Richter's transformation. The original lymph node has shrunk to smaller than a pea and the other larger one is deep in armpit/breast margin and can't be felt, only shows when imaged. My doctor today asked if I wanted to start some treatment. I nap every day due to tiredness but no night sweats, weight loss. palpable large lymph nodes or change in lymphocytes, I bounce in between about 18,000 and 22, 000, today at 19,200 so they haven't doubled. LDH is 184 IU/L, within the normal range. The treatment she is suggesting is Acalabrutinib, a BTK inhibitor. Anyone have thoughts on whether if I have the choice I should start or not? I think I'd rather not if I have the choice. We decided to do a PET-CT scan next Thursday and if I have large lymph nodes in my abdomen, I would start treatment. Anyone else have this situation? Thanks!

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artymarty | @artymarty | Aug 9, 2023
In reply to @loribmt "I know from experience how puzzling these blood cancers can be. Similar to you, I’ve lived..." + (show)
@loribmt

I know from experience how puzzling these blood cancers can be. Similar to you, I’ve lived a very active, healthy lifestyle and still ended up with a shock of a very aggressive form of leukemia. However, I was told repeatedly by my medical teams that it is because of that lifestyle and positive attitude that I recovered so quickly!
Cell mutations are beyond our control. The older we become, the more we’re exposed to a zillion factors that can cause a change. And some just happen randomly. It’s how we cope with the changes that keep up moving forward. HA, we didn’t get to be wise ‘women of age’ by being sissies! ☺️ So keep up your positivity and take this all one day at a time.
I have to ask…Arty Marty…what’s the story behind your name?

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Ha, thanks. When I retired from full time work over 20 years ago, I started taking art courses and have had a very lovely second career as an artist. You can see my work at marthanixonartist.org. I have a show coming up in September, so when time permits, I am working on some new pieces. Love doing encaustics when the weather is good- have to work on my back porch due to toxic fumes when you heat the encaustic ( wax) paint. Also volunteer with a palliative care day program where art is a lovely thing to share with folks who are facing life threatening illnesses.

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Lori, Volunteer Mentor | @loribmt | Aug 9, 2023
In reply to @artymarty "Ha, thanks. When I retired from full time work over 20 years ago, I started taking..." + (show)
@artymarty

Ha, thanks. When I retired from full time work over 20 years ago, I started taking art courses and have had a very lovely second career as an artist. You can see my work at marthanixonartist.org. I have a show coming up in September, so when time permits, I am working on some new pieces. Love doing encaustics when the weather is good- have to work on my back porch due to toxic fumes when you heat the encaustic ( wax) paint. Also volunteer with a palliative care day program where art is a lovely thing to share with folks who are facing life threatening illnesses.

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How wonderful to find a second career that speaks to the senses!! I had to take a peek at your website and love your work! So many beautiful pieces and gorgeous colors!
A few decades ago I taught both encaustic and batik classes. Hah, the old hippie in me teaching the next generations…Such an interesting medium to work with. It’s really enjoyable to see your pieces and hope you get all your work ready for a good showing in September!! I’d say ‘break a brush’…but don’t! 😅
Was this creativity anything you felt was in you before retirement and was left untapped?

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