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@lisa47
Hi I have Primary Plasma Cell Leukemia .
Jim /Alaska
One in 3 million you are also. I was diagnosed April 28 2025.
30 weeks CyBOR D
I’m off chemo since March. Taking a break from side effects .

Let me know if I can help
you with any knowledge I have . Stay Strong .

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Replies to "@lisa47 Hi I have Primary Plasma Cell Leukemia . Jim /Alaska One in 3 million you..."

@knikriverstudios; lisa47

I was diagnosed with primary cell leukemia in May 2026. (what a shock!) Oncologist immediately started me on weekly immunotherary. The plan is to have auto transplant between 4 and 6 cycles. Also take Revlimid (daily for 21 days, off 7 days). I'm 61. For months I knew something was wrong (tired all the time) and kept going to my doctor but whatever test they were doing did not pick up on cancer. Although both parents passed from cancer (colon and rectal), I did not ask doctor to specifically check for cancer, even with my history, I did not expect it at 61.
I agree doctors are not very forthcoming and don't give you the full story. I am yet to find anyone who has survived this dreaded disease more than 5 years. Does anyone know of long term survivors of PCL? Please share. Thank you