Hi @winniegirl It’s really encouraging that your CML responded so well to the Dasatinib to get you into remission. So I can understand your hesitation at jumping into a rather large dosage of Jakafi for your initial treatments of the myelofibrosis portion of your diagnoses.
From my understanding, the dosage can be related to the platelet level at the time of initial treatment. I found a dosage table for Jakafi that delineates the parameters.
https://www.drugs.com/dosage/jakafi.html
From what the table shows, if a patient’s platelet level is greater than 200 the dosage is 20 mg orally twice daily. Which is what your doctor is suggesting for your latest level of 556. (556,000) Normal platelet levels usually runs between 150 and 450.
But that doesn’t mean you can’t have a chat with your doctor. Share with him your concerns about side effects and ask if maybe you can start at a smaller dose initially to see if you get results or to see if you have any side effects. I did similarly with one of my strong meds and my doctor was fine with that. I had leukemia, months of chemo and lost over 40 pounds (weighed less than 100 at that point) so it mentally bothered me to be taking the same dosage as that of a 300 pound man. The lower dosage of my med was found to be effective and I had minimal side effects.
You might even ask, if, for the first week you can start at one pill per day and work up to the total 4 pills instead of taking them all on the first day. That may give you more confidence to start your treatment. It looks like you can take Jakafi on a full stomach too. Food doesn’t impact the absorption of the drug.
You can certainly respect the fact that your hematologist is a specialist but that doesn’t mean you can’t have questions for him. Most doctors welcome interaction with their patients! My husband and I always had a list of questions! That’s how I learned so much about blood cancers. Ask away!
Since the MF specialist, whom you saw for you MF recommended the Jakafi, which now your local hematologist is ordering, was this the dosage she recommended?
@loribmt Hi thank you for responding, I feel so alone. My platelets are up to 750 right now. My Hematologist is is out of the office working in the hospital this week, but his nurse called to see if I had received the Jakafi (which I haven’t) apparently he sent the script to my regular pharmacy not the specialty pharmacy, but the nurse corrected it so I should be getting the medication soon, but there is always the prior authorization. Thank you for the links very helpful! 🙏