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Getting nowhere with current Hematologist
Blood Cancers & Disorders | Last Active: Jun 18 4:34pm | Replies (57)Comment receiving replies
They have differentiated treatment for CALR's slightly, and I'm hoping that all of us who were diagnosed with CALR right out of the gate will be studied and help refine treatment further. My clinic used to send my records to Mayo for study. However, last year it became part of the University of Michigan health system, which has caused major disruptions.
Docs also tend to let platelets run a bit higher in CALRs before starting HU, depending on age. CALR puts you in a low to moderate. If a hemo understands the difference between CALR and JAK2 patients, it's one way to tell if he's well-informed about MPNs.
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Hi again nohrt4me,
Yes, it would be wonderful if patients like you with CALR doing very well and for so many years would be studied. I know there are much fewer CALR patients than a JAK2 patients as CALR only being discovered a little over ten years ago, so I am assuming it will take time, even if somehow your data was shared from your new health system.
As always, thank you sharing your wisdom.
Hope you are having a very enjoyable Memorial Day!
P.S. I really do not think my O/H knows much about the difference between CALR and JAK2 patients and she does not like me asking her questions. 😒 I am hoping for a better experience in August when I see at least a bone marrow transplant specialist as I would assume he knows more about it. I researched my choices through Kaiser in Los Angeles. He seemed the best of what I was offered.