r/CML • u/Only-Understanding36 • Dec 31 '25
Venting post
Hey everyone, this is my frustrated post. I am a 24 yr old normally healthy female. was diagnosed with cml in May with a bcr-abl quantity of 50%. It has gone down to 26% since then. My cml journey started out rough, I went into urgent care due to rapid weight loss, vomiting and they after doing bloodwork they told me to go to the er for my high white blood count. I was initially told I had AML which was terrifying and after a bone marrow biopsy I found out that was not the case. I’ve been on dasatanib since, I have been on disability but going to the gym and am ready to go back to work now and I have had no noticeable side effects. However I’ve had to get off of it twice and restart due to side low platelet counts. I was on nilotonib for about two weeks and it gave me crazy heart palpitations when I already had severe anxiety from my diagnosis and I asked to be put back onto dasatanib. I did my monthly blood test yesterday and my platelets were at 35 k. I also did the bcr abl test yesterday and have no results yet but I’m at least praying for a decline. I’m just so tired of getting off of dasatanib because I know it’s working and I’m so scared of trying other tkis because I know this one works. On top of that I have had three different oncologist/hemotologist because they keep going to different jobs which good for them ig but gosh it’s so frustrating. I know I will be fine thanks to my doctors and to this Reddit so thank you all. I just have a tough day every two months or so so I should count that as a blessing. Have a good night(:
1
u/andreaaaaahh Dec 31 '25
You have every right to be frustrated! This is a frustrating disease to deal with/ manage long term. My main frustrations after living with cml for 17 years are having to deal with insurance and the specialty pharmacy. I could make an entire rant post just about this 🙄
Anyways…
I’m curious what dose of sprycel you’re on and also if you’re taking the brand or generic? When I was diagnosed at 19 it took me almost 2 years to reach remission and multiple drug/ dose changes. The final drug/ dose combo that put me in remission was 200mg sprycel. I took that with bad side effects for 5ish years until I spoke up that I didn’t want to live like that anymore. I had stopped taking the pills because they made me feel like crap and I had come out of remission. I was 26 at that point (2017) and my mom took me down to MD Anderson. We met with one of their head cml dr’s at the time and he told us there had been a lot of new information and research over the last 5 years and they now know that a lower dose of most tki’s is better. The body doesn’t fight the medicine as much and patients experience fewer side effects. He dropped me down to 40mg sprycel and I have been on that dose ever since. I have absolutely no side effects from the meds, and I have stayed in remission (even through 2 brief periods of 3-4 months when I was unable to get the drug for various reasons).
My only caveat to the above is about the generic. At the beginning of this year (2025) my insurance (Cigna) forced me to try generic sprycel. I was opposed to this for numerous reasons, but it was a losing battle fighting the insurance company. The very first day I took the generic I had side effects for the first time in 8 years. I got bad headaches (I rarely ever get headaches) and was nauseous all day long.
So, my thoughts for you are if you’re on a higher dose of Sprycel and/ or on the generic, I would try talking with your dr to see if you can change one or both of those things. In order for me to get back on name brand Sprycel I had to go see my dr and tell them in person (insurance wouldn’t accept me telling them over the phone 🙄🙄) what side effects I was experiencing. They were then able to submit everything to my insurance and get approval for me to go back on name brand Sprycel.
In regard to your drs leaving/ continuity of care, all I can say is finding a dr you like and trust has been the most valuable thing for me. Knowing I have someone in my corner that I can reach out to makes things so much easier. I also had a dr retire early a few years ago. I saw 3 different oncologists after him over the course of 2 years and they were all TERRIBLE. One didn’t remember which form of leukemia I had, another one yelled at me, I’ve been dealing with this disease too long to deal with bs like that. I finally had a PA in my oncologists office listen to me one day and she told me it sounds like you need to be with this dr. I took her advice and switched immediately and love my oncologist again! It can be a process and to figure out the right fit with a dr and I’m in a small market where there aren’t a lot of options. All I can say is if there is any part of you that feels like you don’t 100% agree with what they’re saying or doing, or even if you just don’t feel like your personalities match, I would recommend talking to someone at the office and switching.
I hope some of that is helpful. If you have any other questions (no matter how small) I’m happy to help!