Chronic Myeloid Leukemia now Myelofibrosis: Anyone had both?

Hi @winniegirl Welcome to Mayo Clinic Connect. It can feel pretty lonely with an uncommon diagnosis. So I’m very happy you joined Connect. This is a great place to come for support!

Both CML and MF belong to a group of blood cancers/conditons called myeloproliferative neoplasms (MPNs). There are several conditions associated with MPNs and sometimes, from my understanding, they can run concurrently. But they may require different forms of treatment.
Has your doctor discussed a potential treatment plan for you?

@loribmt He just said you are likely to live 10 years. I then saw a Myelofibrosis specialist and she wanted to put me in a trial but they did not accept me because of the CML. She suggested Jakafi and my hematologist is putting me on it, he issued the prescription for prior approval and said to give it about a week. My CML is now in remission.

Hi @winniegirl It sounds like your meeting with a myelofibrosis specialist was really beneficial for getting the treatment you need with your combination of having MF and CML. Jakafi is a very common medication for MF. If you’d like to check out discussions with other members who are also taking Jakafi for MF, here is a link for you. Feel free to tap into any conversation!
https://connect.mayoclinic.org/search/
I have to ask about your CML. Did that just go into remission with no treatment whatsoever? What does your hematologist think of this?

@loribmt Hi, I am on Dasatinib 100 mg. I started taking this August 5th 2025 so in 9 months I achieved remission, but the white count and platelets never went down and are now increasing. My hematologist wants to start me on 20 2 times a day, but from what I have read I think I should start on a lower dose, my hematologist says he is a specialist too, I have the option to switch hematologists one time but am hesitant to switch right now, the Myelofibrosis specialist I saw was very informative, and companionate, I am just frightened and don’t know what to do.

Compassionate!

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?

@winniegirl
HELLO WINNIE AND OTHER FRIENDS
I READ SLMOST EVERY POST TO LEARN AND TO SHARE FROM PERSONAL EXPERIENCES!
I was on JAKAFI FOR LITTLE OVER A YEAR , memory not sharp any longer 🥵
MY ONCOLOGIST HEMOTOLOGIST PRESCRIBED JAKAFI!
IT QUICKLY REDUCED ALL MY BLOOD NUMBERS BELOW LOWEST , I COULD TELL BECAUSE THE FATIGUE WAS SEVERE , I REDUCED DOSE BY HALF ! On my own! Went to HEM/ONC WHOME I JUST TOTALLY
Trusted and LOVED 🥰
I ASKED TO BE SENT TO MPN SPECIALIST , I had seen him once for consultations!
THE MDS MPN DOC
TOOK ME OFF JAKAFI BECAUSE AMM MY BLOOD NUMBERS WERE EXTREMELY LOW !
My opinion is that JAKAFI IS A GOOD DRUG ! However BLOOD LEVELS MUST BE CLOSELY MONITORED!
I AM NOW BEING TREATED FOR MF MYELOFIBROSIS BY THE MPN/ SPECIOLIST !
I would SUGGEST THAT YOU GO GET TREASON BY THE MPN SPECIALIST!
HE OR SHE SPECIALIZE IN BLOOD DISORDERS OR BLOOD CANCERS !
Make A FIRM DECISION AND TELL THE MPN DOC YOU WOULD LIKE HIM TO TREAT YOU GOING FORWARD!
The HEM/ONC SHOULD UNDERSTAND YOUR DECISION!
Good 👍 LUCK 🍀 HANYA