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Getting nowhere with current Hematologist
Blood Cancers & Disorders | Last Active: Jun 18 4:34pm | Replies (57)Comment receiving replies
Such nice comment about progression, you don't know my labs. I am under the care of a very good oncologist and he knows what I went through with HU and I think he knows what HE is talking about when he said he is researching a med not in the chemo class for possibly down the way. I am on a baby aspirin and the dietary changes I made and I am happy for now with my platelets staying stable and will continue to do as I am as long as it lasts. You seem very angry with your comments or by what is going on with your treatment and had to try and rain on me. I am constantly on line checking on ET and know what I am reading. I was in the medical field working in the lab for years. I know this could end or not with my platelets staying stable but for now I am happy and enjoying it.
Replies to "Such nice comment about progression, you don't know my labs. I am under the care of..."
Glad you are in a good place now and feeling well. I have had ET x 17 years. My dad also had it. Just sharing my experiences and info in hopes it helps someone else. Not trying to scare people about progression, but it's part of the landscape for many of us. I do try to restrict my comments to others whose treatment goals and experiences on here are similar to mine. I'll certainly try do better with that. Best of luck to you.
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Hi @jello13577 ,
I eat healthy and was happy when my platelets went down without meds, but then my O/H sent me a memo saying I “might be transitioning” to worse condition. My red cells and hemoglobin were down that one time too. Strangely, my red cells, hemoglobin, and platelets went up again without me taking meds so I am basically the same as when I started with the new insurance I chose. I am blessed to feel fine and have no symptoms. I do take 81 mg aspirin qd now and have no clot history and normal BP except in doctor’s office. I take my BP each morning at home and the highest in many months at home with new approved monitor is 124/76, but it is usually less. It was 110/60 last time I checked it. My primary doc is fine with my BP and me taking it each morning at home. He says I have a White Coat syndrome. He also said platelets can vary with stress levels. He does not treat blood cancer so I am stuck with my O/H.
I am very interested to hear what your O/H shares with you for non-chemo options possibly down the road for you. I have CALR1 mutation.
Have a pleasant rest of your weekend and stay positive.