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jfinlay (@jfinlay)

Myelofibrosis

Blood Cancers & Disorders | Last Active: Feb 23, 2020 | Replies (8)

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@cathyd

Hi John…my husband carries this diagnosis along with myelodysplastic syndrome. This has all been pretty recently discovered and all very confusing getting different answers everywhere we go. I am wondering how you are and your symptoms and treatments. Thank you..

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Replies to "Hi John...my husband carries this diagnosis along with myelodysplastic syndrome. This has all been pretty recently..."

Hello Cathy.
Sorry to hear of your husbands’s diagnosis. I was diagnosed 11 months ago and it’s been a roller coaster ride. Some good days, then bad days. I took hydroxurea for a while due to an enlarged spleen, but it didn’t help so last October I had a splenectomy. Then in February of this year I went to the Mayo Clinic in Minnesota. I saw Dr. Tefferi. I really liked him, and he was encouraging. He put me on an oral chemo (Revlimid). It brought all my blood counts down, which was expected. My local doctor had to take me off due to the white cell count getting too low. I took the chemo for 28 days (5 mg) and I’ve been off for 7 weeks. My counts had started coming up, but last week the platelets went back down. So, with all that being said, I’ve decided to try an alternative treatment, hopefully in early July. Rather than me try to explain this treatment, I’ll give you several word to google and a website to go check. I’m skeptical, but I’ve got to try it. Here’s the website and words:
Healingcreatively.com
Biophotons
Johan Boswinkel
I’ll be going to California to get this treatmen, and I’ll let you know what happens.
I’ll also be praying for your husband and you.
You can reach me at jofinlay44@gmail.com if you like.
God bless.
John

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