joseph2 how much turkeytail did you take? For only 12 weeks or are you still taking it?

Hi there, I have Waldenstrom’s and love and trust my oncologist (MD Anderson). I never had a PET scan. Like you, platelets dropped very low (mine lower than yours) IgM 1027. Bone marrow biopsy showed I have MYD88 mutation. I believe this info should be available from you having had the biopsy? If you have the mutation (90% of WMers do) you have Waldenstrom’s Macroglobulinemia. My infiltration into bone marrow was less than .9% which is very early stage. Another question to ask. If you haven’t already gotten these answers I’d get a second opinion. Make sure you’re completely comfortable with and completely trust your oncologist. My best to you!

Hi Joseph2, thanks for sharing that. It's an interesting story. My platelet count are staying in the 20s and 30s over the last couple of years. They did do a Hepatitis C Antibody which was negative but I did have covid just a month before the really bad blood tests started. Do you think the turkey tail helped you?

Get a viral load test. I had Hep C that caused my stage 4 lymphoma. Other viruses can cause cancer. My platelet count drop from 167 to 107 from one month to another back in 2018. Had high liver enzymes. No Doctor said anything about that. Always said blood work was good. Don't think they even look at it that good. This past April my doctor wanted to see how my liver was. Results showed liver slightly fatty .
They did find a 10.7 cm turmor on my spleen which is a secondary effect of lymphoma. Had biopsy confirm cancerous.
Bone marrow biopsy said stage 4. Started taking turkey tail mushroom extracts in may. Had to get meds to get rid of Hep C first before getting chemo or radiation if I wanted. It was a 12 week medication
In September had ultrasound and the turmor had shrunk to 6.7 cm without taking chemo or radiation. Feeling great have pet scan scheduled for January 15. So see if you have any viruses first

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