Hi guys, I am 28F recently diagnosed with CALR (not type 1 or 2) after finding my platelets were 1,500,000 after an unrelated ER visit. Every single thing in my blood panel is normal except for my very high platelets . My hematologist wants to start me on Hydrea right now but I have yet to take it. I am a very “holistic” I guess you could say person medicine wise. I’m a healthy person otherwise and this whole thing has been a shock. Anywho, I was wondering if anyone has had any experience with taking supplements as opposed to hydrea or other prescriptions? I am aware that this is a chemo pill and I do NOT want to take it. I’m very reluctant and would love to know if there are any other mpn ~natural route~ peeps in this group. Please don’t come for me if not as I am not bashing anyone who does take these prescriptions, I just have a personal preference and that is all. Any input of anyone’s experience in general helps rn as I am in a very confused state still!
u/Mysterious_Image_579
Hi all, I am a 28y/o female and wound up in an oncologists office after and injury on the job. I was injured while working and went to the ER later that day, in the ER they found I had platelet levels of 1,500,000. Everything else in my blood results is perfectly normal. Follow up at oncology, they send me for a BMB. BMB says no jak2, leukemia, lymphoma, etc. The only thing they found was positive CALR and they cannot detect type 1 or type 2. Blood tests still perfectly normal. I’ve read that the life expectancy for those with CALR is 20-30 years. I’m not sure what to feel. My husband and I want children and this changes everything. It changes everything in general as, how does one plan accordingly for this new “ETA” for death? I’ve also read that if you’re diagnosed at a younger age, the life expectancy timeline doesn’t apply. All of this is very new and confusing to me so, if you kind people have any input it would be very appreciated at this time. Thank you so much!