So, I got lucky the other day when my hematology nurse called and said they had an opening yesterday to review my results. I met with my doctor and she said that my bone marrow had not changed, which was, of course, great news! However, she referred me to another specialist for a second opinion (her idea) and she also wants me to make an appointment with the transplant specialist. We’re trying to figure out why I have persistent fatigue, muscle weakness and brain fog and if an SCT is warranted to improve my quality of life. We’re also going to reduce my hydroxyurea from 1000 mg a day to 500 mg a day and continue taking my Fedratinib. My platelets have consistently been in the 700’s to 800’s, and my hemoglobin has been in the 10’s this year, so the medication is working.
So that’s about it for now. The saga continues!
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Cja1956
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Sounds like good news on the BMB. Glad to hear you are going to get a second opinion.
I expect you already know that at least some of the symptoms you are experiencing may be adverse effects from the meds. Perhaps a different combination would help.
Hi, Hunter, thanks so much for your input and for the links. I was able to open the first one but then they asked me to log in for the second one. There certainly are a lot of side effects to the Fedratinib. So, I guess it’s good that I’m getting a second opinion. Be well.
Th ePocrates only lets you check one drug at a time unless you have an account (which is free). You can usually log back in later and see the other link, but ePocrates is a great tool so worth having an account.
Overall good news then Cindy and perhaps much better than feared. They seem to have all the bases covered and not rushing things towards SCT but taking a measured approach. Would be good if they could identify the root cause (s) of your debilitating symptoms. As you say the saga goes on but hopefully towards a positive outcome sooner rather than later.
So thrilled for you regarding the diagnosis, so far, and lowering the HU…may your platelets remain in that stable range!Best wishes, Cindy, and I look forward with hope to a favourable 2nd opinion and no need for an SCT. x
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