Chronic Myeloid Leukemia now Myelofibrosis: Anyone had both?

Posted by winniegirl @winniegirl, Feb 19 6:59pm

Does anyone else have both? I was diagnosed August 2025 with CML, treated with Dasatinib 100 MG BCR ABLE down to 0.02 in 6 months but white count still between 19,000 23,000 and platelets 556, so another bone marrow biopsy and now also diagnosed with Myelofibrosis. My Hematologist said he is going to write a paper on me as this is very rare. Anyone else or am I alone?

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winniegirl | @winniegirl | May 21 5:26pm

In reply to @loribmt "Hi @winniegirl It’s really encouraging that your CML responded so well to the Dasatinib to get..." + (show)

@loribmt

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?

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@loribmt the specialist wanted to put me in a trial but they would not accept me because I had CML. The trial was with Jakafi and another drug if the Jakafi did not work. Glad to hear you had leukemia and not have it now!

Lori, Volunteer Mentor | @loribmt | May 22 8:52am

In reply to @winniegirl "@loribmt Hi thank you for responding, I feel so alone. My platelets are up to 750..." + (show)

Hi @winniegirl You’re never alone here in Connect. We may be miles apart, sitting behind our computers instead of at a kitchen table together sipping tea and sorting through life’s trials. But it helps to know someone is nearby to toss out a lifeline for you. ☺️
I know from my own experience, starting a new medication can be filled with uncertainty. With your diagnosis of myelofibrosis (and the CML being in remission) your doctor is recommending that you take the drug Jakafi. This can be a very effective drug for helping to get your MF under control and to help keep it from progressing. This larger dosage of Jakafi that has been prescribed may not be long term once your platelet levels drop to a more normal level. Often medications like that can be adjusted to the lowest effective dosage after a certain level of treatment has been reached.

The first pill is always the hardest to swallow with fear, and trepidation. But usually as the day goes on, you forget you’ve even taken it and realize nothing happened! You’re waiting for the ‘worst’ but not having any idea what that might entail. Usually, it’s nothing because our imaginations can be stronger than logic.
You’ve got this, gurl!! What’s the old saying from childhood?? Through the teeth, over the gums, watch out stomach, here it comes… 😂
This medication can make a big improvement for a healthy future ahead.

donirankin | @donirankin | May 22 8:02pm

In reply to @winniegirl "@hanya Thank you for all your information! My hematologist was great for my CML, but I..." + (show)

@winniegirl My husband has MDS overlapping Myelofibrosis. His hemoglobin is always below 8, so he has to have blood transfusion. Before the blood transfusion he feels really tired and weak.

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