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I would deeply appreciate some feedback on patients dgnosed with CMML
Dear friends in the group, I would deeply appreciate receiving some feedback on patients diagnosed with CMML.
Thanks
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Hi @ismatjahan007, A few weeks ago we had a conversation about your sister who was diagnosed with CML. Has her situation changed?
I was diagnosed with CMML ten years ago. What would you like to know?
They tryed a lot of things here in Martinville but got to where nothing worked. I heard about md Anderson in Houston they have helped greatly it is a great hospital and they know what they are doing. I am getting better
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1 ReactionHow are you doing now I have been two years now at MD Anderson I am getting better
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1 ReactionDear Lori
It was my mistake. It is CMML. My sister was on hydroxy urea now the oncologist advises intravenous chemotherapy alongwith hydroxy .
I would like inspiration from stories of others who have gone through this..
It is always a big strength to learn from others..Deep gratitude!
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1 ReactionI was on hydroxides for several years but it reached a point where it wasn’t working very well (also had a sore on my ankle that concerned the doctor) so switched to Jakafi. There are several drugs that work for CMML, my doctors tell me. I hope your sister is seeing a hematologist at a teaching hospital. I have been taking Jakafi for several years and my doctors say if it becomes ineffective there are others to try. Second opinions are always a good idea. Travel to another state if you have to.
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2 ReactionsI was diagnosed back in May at 78 but my low platelets and anemia go back about 2 years. My bmb showed no blasts do supposedly I'm in stage 0. On my last CBC my monocytes were 850x3.
I go to Mayo in Phoenix. Super happy.
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2 ReactionsDear Lori,
It was mistakenly mentioned by me as CML .In fact my sister has CMML.
She had been on hydroxy urea since May 2025. As her WBC and platelet counts have been fluctuating. Doctor now suggests intravenous chemo additionally.
So far,she is generally speaking,fine except for some itching and body ache.
I just wanted to hear experiences of those who have gone or going through CMML.
I remain in deep appreciation and gratitude.
Ismat
Thank you for sharing your experience and your valued suggestion.
Wish you the very best .