r/CML

Im a 28F and been living with CML for about 6 years and am currently taking 100 mg of dasatinib daily.

Over the years, I’ve experienced gradual weight gain. I’ve always struggled with being overweight, but the fatigue makes it difficult for me to exercise consistently, which probably doesn’t help.

Lately, I’ve also been dealing with intermittent headaches that have been coming and going for the past few weeks. In addition, I’ve noticed some memory and concentration issues. I do have ADHD, so I’m not sure whether those symptoms are related to ADHD itself, the dasatinib, fatigue, or something else entirely.

I’m curious whether anyone else on dasatinib has experienced similar issues, particularly fatigue, weight gain, headaches, or cognitive problems (“brain fog” or memory difficulties).

I’d really appreciate hearing about your experiences. Thanks!
(P.S- rephrased my concerns with AI since English isn't my first language.)

I am newly diagnosed as of March. My most recent BCR-ABL was <1% and my bloodwork has normalized (BCR-ABL was ~40% at diagnosis, WBC 128k), so I'm really lucky to be responding extremely well to asciminib. However, I traveled for work recently to a large conference and have now come down with covid. I am super bummed because after returning from the conference, I took a roadtrip with my husband and kid to go see my family who live out of state. My mom is recovering from a pretty nasty bout of pneumonia, so I can't see her until I'm not infectious anymore. Just curious about what covid recovery has looked like for you? Also, I have not had any sort of high fever yet, but I'm nervous about spiking a fever (my onc has said they're unconcerned, but to reach out if my temp goes over 100.4). Any fever experience you'd like to share would be welcome!

How long did it take for your insurance to approve a TKI once you were diagnosed?

Recently diagnosed here and it’s been a few days of it being in delayed status. I know it needs to be pre authorized by my insurance but curious how long you waited for yours to be approved?

Hi All!

40M just diagnosed with CML and pending starting Imatinib.

Just this year, I started getting aesthetic treatments and have seen great results and would ideally like to continue doing them if at all possible. Here is what I’ve had done so far: RF micro-needling (Potenza), Juvelook (collagen skin booster) and lifting treatment (Ultherapy Prime).

Has anyone with CML been able to proceed with aesthetic treatments or is it basically a no go with such a diagnosis?

I have my initial appt with my oncologist in a cpl days so will definitely ask but curious if anyone had experienced anything similar.

I am stressing right now cause my doctor want to switch me to dasatinib cause I did not achieve remission after taking it for a year. I am currently on.29. I am scared and upset because I tolerate Imatinib now, no side effects and feel like normal. Anybody had this experience ?

Hi,

Are more people experiencing getting pale skin and being unable to tan in the summer? I really hate it, I’m on sprycel 100mg and look like Casper the friendly ghost.
I’m also wondering whether this is the same with every TKI and whether dosage makes a difference?

Hey guys, I M(23) was diagnosed end of March and have been taking 2 40mg pills a day at 5 am. Recently I’ve been waking up very groggy as I wake up and go back to sleep for two hours before preparing to go to work. I’m thinking of taking it at 3 pm as it’s a perfect window for me as it’ll have been 2 hours of me not eating with breakfast and lunch out of the way, and I can still have a relatively normal dinner.

My (23F) recent mutation testing showed positive for ASXL1 mutation around 7%. I haven’t seen anyone on here post about this so from everything I’m reading in studies I’m scared and confused. My Dr has suggested looking into a bone marrow transplant and referred me to a Dr to start this process. To be honest after hearing about how treatable CML is meant to be and easy it is to live with, it’s so so discouraging to have these results. I constantly heard that 90% of CML patients responded to tki. My bcr abl was 30% at 6 months and I was switched to asciminib. My dr made it seem like this is my last chance and then at 9 months we will do the transplant. so scared and confused. * i will add, I got a second opinion at a bigger hospital and well known cancer institute, and my Dr there told me he’s only done 1 BMT in 10 years for a CML patient. Its hard for me to grasp that my main Dr at home is suggesting BMT this soon but he seems concerned by this mutation

Hi friends.

Just curious if anyone else on here has experienced getting IIH from Oral Chemo?
I feel super lucky I’ve only had a short stint with it as it’s quite scary but just wanting to hear other peoples experiences of when they could discontinue diamox?

I was switched to Nilotinib once this issue was picked up and I’ve been given the all clear from the ophthalmologist, but the neurologist is quite pricey so I don’t want to push for a sooner appointment if she’s only going to tell me to come back in a few months.

Thanks!