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Getting nowhere with current Hematologist
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (43)Comment receiving replies
Thank you for your kind words. It's so comforting to know there are others out there like me (having my condition listed on rare diseases.org was kind of daunting 🙂 ). My only symptom was unexplained weight loss. I had occasional night sweats but have had them on and off since menopause so didn't attach any significance to them. When I had my annual physical with my PCP she did some follow-up tests because of the weight loss (thyroid, A1C and CBC) and my platelets were sky high and the only thing out of whack. I've lost 25 pounds in the last 4 months (I knew the extra weight I've been carrying for the last 15 years would come in handy 🙂 ).
I had a bone marrow biopsy with genetic analysis done at Mayo and I have the CALR and DNMT3A mutations and I'm currently on 1000 mg of hydroxyurea. I have an appointment on June 16th with the 2nd hematologist and will talk with him at that time about a possible consult with Mayo Clinic (I live in north central Wisconsin, about 200 miles from Rochester so not too bad a drive.)
BTW Thank you for the link to the PMF group. I re-posted my original comment there.
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Hi Ruth, I had to smile with your comment about the extra weight you’d been carrying the last 15 years coming in handy! Raised my hand in commaraderie with you on that…same for me. The weight loss was my first symptoms of my cancer though I was naive enough to think it was because my efforts were finally paying off! 😂
I’m also in north central Wisconsin and found it absolutely worthwhile to seek care at Mayo-Rochester, in case your hematologist #2 isn’t living up to your expectations. We don’t need to be best friends with our doctors but we should be able to expect a certain level of communication, empathy and guidance. The right practitioner is out there for you! Are you near a Marshfield Clinic?