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Anyone diagnosed with both myelofibrosis and Waldenstroms lymphoma?

Posted by dunewalker @dunewalker, Mar 2 8:27am

I was diagnosed with myelofibrosis two years ago and started Hydrea 250 mg daily with no adverse results.
Now Waldenstroms lymphoma has been added to the mix.
I have PET scan and Bone Marrow Biopsy scheduled for this week.
I’m 84, very active, not worried but wonder what I might expect to learn from these diagnostics?
Has anyone had both diagnoses?

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catherine52 | @catherine52 | Mar 3 8:55am

I am 73 and am positive for Waldenstrom’s Macroglobulinemia, MYD88 positive, CXCR4 negative.
In addition, I have polycythemia Vera, JAK2 V617F positive. For PV, I take Hydroxyurea 500mg twice weekly and have therapeutic phlebotomy twice monthly, 500 ml each appointment.
For WM, we are going to start BR Bendamustine-Rituximab treatment for 6 cycles. I have had both conditions for about 7 years. The bone marrow biopsy was important in my exact diagnosis.

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dunewalker | @dunewalker | Mar 3 9:00am
In reply to @catherine52 "I am 73 and am positive for Waldenstrom’s Macroglobulinemia, MYD88 positive, CXCR4 negative. In addition, I..." + (show)
Profile picture for catherine52 @catherine52

I am 73 and am positive for Waldenstrom’s Macroglobulinemia, MYD88 positive, CXCR4 negative.
In addition, I have polycythemia Vera, JAK2 V617F positive. For PV, I take Hydroxyurea 500mg twice weekly and have therapeutic phlebotomy twice monthly, 500 ml each appointment.
For WM, we are going to start BR Bendamustine-Rituximab treatment for 6 cycles. I have had both conditions for about 7 years. The bone marrow biopsy was important in my exact diagnosis.

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@catherine52
Thanks for your response. It’s always good to know you’re not alone when going through stuff like this.

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catherine52 | @catherine52 | Mar 3 9:11am

Just wanted to share that you are not alone. I have met so many caring individuals since my dual diagnosis. Wish I didn’t have to meet everyone under such circumstances, but they are the wind beneath my wings. Good luck with the bone marrow biopsy. It went quickly for me because the doctor told me how long it would last and I imagined myself lying on a beach in Hawaii.

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dunewalker | @dunewalker | Mar 3 4:18pm
In reply to @catherine52 "Just wanted to share that you are not alone. I have met so many caring individuals..." + (show)
Profile picture for catherine52 @catherine52

Just wanted to share that you are not alone. I have met so many caring individuals since my dual diagnosis. Wish I didn’t have to meet everyone under such circumstances, but they are the wind beneath my wings. Good luck with the bone marrow biopsy. It went quickly for me because the doctor told me how long it would last and I imagined myself lying on a beach in Hawaii.

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@catherine52
I love your positive attitude, Catherine.
That helps so much. Thanks. 👍🏼🤗

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