This group/site, members' input, and the webinars have helped me more than my hematologist oncologist! I have also done some individual research/reading.
Support groups like this one and healthunlocked.com. I was not 100% happy with my hematologist/oncologist. It was out of the concern of support group members that I found an MPN specialist. I literally went from no care to being professionally cared for. I trust those “in the trenches” with me. I continue to learn from them everyday.
I like all the information. Just took some to my eye doctor on the eye issues who is scheduling me for Cataract Surgery. The Article on Conditions Related is going to my new Primary. In addition: I never ever saw an MPS Specialist I just recently went to Moffitt in Tampa to see an MPS Specialist, just for a review of my symptoms and the protocol. My local, fairly new oncologist, was happy that I went. I think she is just too busy to look into new information and protocol. My HCT was at 50.5 so I have had 3 phlebotomies a week apart, at 250 CC and I am feeling much better, it was an interesting 3 weeks to see how my symptoms have changed. Moffitt recommended 500CC which said would reduce counts by 3, but my Doctor wasn't in agreement with that so we decided to stay with the 250, but do it 3 weeks in a row. Asking to be checked again next week to be sure I am below 45. Might be in line for a trial this fall for Rusfertide if I can tolerate a 3 hour trip to Tampa every couple of month. Would like to get in the study just to see if it eliminates the phlebotomies. If you haven't seen an MPN Specialist, I would highly recommend one just for a second opinion and protocol.
My oncologist and WebMD. New diagnosis and still feeling a little bit at sea.
We never share your personal information with anyone.