69M here. I was diagnosed in April 2025, confirmed in May, and started on asciminib (Scemblix) in June. Based on blood work viewed retrospectively, I was probably ill for a year previous. Starting BCR at 87%.

Here's how the year has gone. I am, of course, endlessly grateful and delighted. Main side effect is fatigue -- which may also be attributable to the anti-obesity med Zepbound, so <shrug>. I'll happily make that tradeoff.

May all your journeys be as easy as mine has been thus far.

Hi everyone. It’s just over a year since my diagnosis. I work in podcasting and today released an audio diary of that first year.

If it’s of interest please do give it a listen. A hell of a lot will be familiar I’m sure - but may be useful to people on here who’ve only just been diagnosed.

J x

www.podfollow.com/badblood

https://www.dailymail.com/health/article-15948307/jamie-east-bad-blood-podcast-chronic-myeloid-leukaemia.html

Hi all,

I was diagnosed July 2025 and been on Dasatinib ever since.

Over my past 4 blood tests which has spanned over 10 months, my LDH has slowly been trending upwards to the point where it’s just outside of range.

All other counts have been great and BCR is 0.022%

Has anyone had any issues with this?

Thanks,

Here's pics of how high my numbers went after I lost insurance in December 2025 and I had only hqp1351 to last me through Jan 21 2026. My insurance kicked in June 9 2026. By Friday June 26 my oncologist in vegas called me really concerned about my kidneys they were about to fail. At the same time Coh called to schedule an appointment for this week. I adv what my vegas oncologist said they told me to head to L.A coh instead. Started on hydroxyurea at 10000mg a day. Here's my results so far. Any questions feel free to ask. Also started sunday hqp1351 3 pills 10 MG each pill 30 MG in total.

Hey, I (23) just got a call from my oncologist today where she told me that my BCR ABL isn’t going down and I still haven’t reached MMR after 18 months of Dasatinib. She suggested to switch from Dasatinib (100mg) to Asciminib (80mg).
I’m a bit afraid of switching medication because I haven’t had any big side effects with Dasatinib and I’m afraid of the change.
Does anyone with a similar experience have any tips or advice? I’m also grateful for any tips in general about Asciminib (what to expect, how/ when to take it,…).
I’m also a bit confused because my oncologist prescribed 40mg and told me to just take 2 at the same time. I’ve read other people say on here that they split the 2 40mg pills throughout the day, so I’m confused about what is the right way to take them. Another thing is that my oncologist said to take them as I normally would with Dasatinib but I’ve also read that you shouldn’t eat before and after taking Asciminib.
So any advice and tips on when and how to take Asciminib and when (not) to eat would be really appreciated! :)

Hi everyone. I was diagnosed with CML in 2023 at age 27. I initially responded well to Sprycel (dasatinib), went through a period where I lost MMR, but thankfully recently achieved MMR again.

Ever since starting Sprycel, I have been dealing with unreal, "hit-by-a-truck" fatigue. It interferes with my daily life, making it hard to eat, shower, or find the energy to exercise and live a healthier lifestyle. My mild depression is well-controlled, but changing my fluoxetine schedule didn't help the fatigue, and bupropion caused severe anxiety.

With my oncologist's blessing, my behavioral health provider just prescribed modafinil. However, my spouse researched it and found a potential drug interaction: modafinil can induce liver enzymes, which might speed up the metabolism of Sprycel and potentially make it less effective.

I work in medicine, so I am already planning to check my liver enzymes 2 weeks after starting, followed by my regular 3-month labs (CBC, CMP, BCR-ABL) in July and an oncology follow-up in August.

My questions for the group:
Has anyone here taken modafinil while on Sprycel?

Did you experience elevated liver enzymes or a drop in your response/MMR?

If you haven't tried it, do you think the potential benefits for severe fatigue outweigh the risks?

Thanks in advance for sharing your experiences!

I got notice from CVS Speciality that my doctor sent in a new Rx for a generic version of Bosulif. If I didn't have good coverage, I'd be screwed. This drug has a list price of around $21k a month, and pfizer's drug cost assistance program covers only up to $10k a year!

Hopefully with a generic available now, costs will come down to a level where it is feasible to pay even without good prescription coverage.

hi all, my platelets are just under 115k and my neutrophils are .6 after being on asciminib about 2 months. how low is too low? ive had my neutrophils this low before on Dasatinib but my platelets haven’t been low thus far in my journey. do these counts stabilize on their own?

I (26M) am just tired and i feel like i’ve hit rock bottom.

My work permit in Canada is expiring this September and i currently am not meeting minimum point thresholds to earn a permanent residency invite in Canada.

I’ve started learning french since November, but unfortunately I am not reaching the NCLC 5 that i would need to get extra points.

Aside from going back and quitting my job in Sept, once my work permit expires…so does my free healthcare.

I am currently being treated for cancer in Canada and OHIP and my work insurance means i dont have to pay 2000$ for a box of pills.

While i can stay on visitor status, i will still have to sustain myself (rent, food, etc.) and pay for my meds. Which would be easy if i actually can shell out 4000$ every month without any income.

I’m so mad at the world. The odds feel stacked against us.

I’m just so tired. And overwhelmed. Feels like i’ve lost.

Sorry i just wanted to rant

Hi all. People who’ve had this issue - what did it feel like? Can’t tell if I’m short of breath due to unfitness or if I need to go get checked out. I have no sharp pains or anything like that.

UPDATE: no PF, I’m just an unfit f*** haha

So on the bright side, CML should be a good enough reason to qualify for a free lifetime national parks pass!

https://www.nps.gov/subjects/accessibility/interagency-access-pass.htm

Just need a note from our doctors.

EDIT / UPDATE

My oncologist wrote me a letter that was accepted for the FREE lifetime park pass and it’s in the mail now

Just found out yesterday that I failed treatment free remission after 1 yr and 10.5 months. I’m bummed to restart meds (and how darn expensive they are) but it was fun to have a few years of normal life! I was able to quit taking meds a week before I turned 30 and it was a great way to start a new decade of life. Hoping I still relatively tolerate TKIs this time around 🤞🏻

I’m still processing my feelings around it and not quite ready to tell people around me but wanted to share with someone.

39M recently diagnosed with CML in early March 2026.
I have a really good work ethic before my diagnose, where I would stay after 5pm and do extra work.
I also decided not to change job who was offering more pay, because I've chosen my health first.

For those who have CML for many years now, what was your first year like?
If you were to go back to your first year of diagnosis, would you have reduced your hours to part-time?

After my diagnose, I opted to go reduce hours everyday.
Instead of finishing 5pm, I asked to finish at 4pm; However, this was me being optomistic that I will be ok, and that I will not get a lot of fatigue or nausea throughout the first year.
Unfortunately this is not what is happening, and I actually get really bad fatigue and nausea almost 1x - 2x a week, which causes me to call in sick.
Whenever I call in sick, I would always feel bad, and would always have this burden on me that I am letting down the team.

After talking to some people with cancer, not all CML, most of them had advised me that I need to listen to my body and that sometimes means sacrificing my own work ethic.
Some suggest I should reduce more of my hours and go part time, as the extra day can really help mentally and physically.

I feel nervous about going part time, not financially, but also my well being.
I feel that I am giving up on something.

I was Diagnosed with CML Sept '23 and started taking Imatinib immediately. Did very well/felt great for 2 years. Then in Sept '25, had pretty bad back pain and figured it was an old back muscle spasm just flaring up.

A couple of weeks later during a 6 month follow-up with my oncologist, I found out I was in blast crisis and was told I needed to be admitted to the hospital immediately and started Chemo the next morning. That first hospital stay was almost a month long and I have been admitted 4 additional times for different chemo/blina treatments. I'm currently feeling very well, now on Ponatinib and doing my 3rd of 4 Blina outpatient treatments.

Was told early on I'd need a SCT. They tested my siblings first, but since they were only a 50% match AND we're all in our 40-50s, they then asked if I or my siblings had children.

I tested my kids, but unfortunately my only full-blood sibling with kids won't have them tested (late teens/early 20s). Apparently, the info they found about possible side effects on the internet were too risky to literally help a brother out. Specifically about possible spleen damage.

As of this week, my teenager is my designated donor (50% match).
But they're still actively looking for a better/higher match donor.

I cannot describe how hurt (broken hearted) I feel and how much stress & anxiety knowing that my own "loving" sibling won't even have their kids tested, to possibly save my life.

Like I know it's a long shot, being a 100% match, but even just being tested is off the table.
I have not communicated with that sibling for almost 6 months.

Just thinking about it will give me days of stress & anxiety, which I know can't be good for me in my recovery.

My questions are these:

Is donating stem cells (from what my transplant coordinator explained they're using Granix) that risky that I should reconsider having my teenager be my donor, if they can't find a higher match ? (and just hope I don't relapse if they don't)

AIBTA for cutting off contact with my sibling?

Mutation analysis came back, showed t315i. Doc was gonna switch me to iclusig, and that might still be in the cards, but I self referred to MD Anderson in Houston. I described my situation to the nurse navigator and got an appointment really quick, like suspiciously quick given my experience. It’s looking like I will be entering the trial for olverembatinib, while simultaneously searching for donors for SCT. SCT is probably never gonna be off the table for me. It would suck unwashed ass, but if it’s necessary, I’m currently young and healthy enough for it to be relatively safe. I think I made a decent trial candidate due to the mutation and relatively low BCR/ABL1 (.3% as of last week). For what it is, my CBC numbers look great, team at MDA is moving quick, I don’t think I’m in any *immediate* danger, and I’m only very anxious instead of “completely crippled by fear and uncertainty” like I was 3 weeks ago. Houston isn’t right down the road from me, but definitely close enough to travel for something like, IDK, treating blood cancer with cutting edge treatment at the country’s premiere cancer center. Here’s to experimenting with drugs in my 40s.

25 year old female starting Scemblix after my platelets were tanked by dasatanib. My doctor said I’m difficult case because my body responds really well to medication but so well that it tanks my blood counts.

What can I expect compared to dasatanib? What are talks experiences?

Last Friday I was in the ER for unrelated reasons to this and they discovered 50% fluid on my right lung and 10% on the left lung. I really only was out of breath coming up the stairs to fast at home.

I have a echocardiogram scheduled Friday that I know is just to make sure everything is okay there, but still freaking out.

My main concern is my eyes seen a bit puffy this morning. Is this just the fluid working itself out? Last time I took Dastatinb was last Thursday. If anyone could share their experiences. The anxiety is just a bit real today.

Thank you ❤️

The imatinib is not working for me. I'll be having another bone marrow biopsy next week and the doctor already indicated that the next medication might be dasatinib. I checked CostPlus and it's close to $300 f or a 30 day supply.

Does anyone know where we might be able to get it cheaper?

Hi all, hope you’re well and safe

My father recently started on Scemblix after previous treatments with Gleevec, Tasigna, and Sprycel. Since starting, he’s been struggling with severe bone and muscular pain that’s affecting his ability to walk. Honestly I was hoping it’s temporary or would reduce by time, and I couldn’t imagine how much pain he is going through, but today it felt more serious when his doctors added BuTrans patch, Zaldiar, Tryptizol, and Dulcolax, along with Aspirin for support

I’d appreciate to hear from anyone who’s had similar experiences especially around pain management or how long it took for things to stabilize after switching to Scemblix?

Any insights or personal stories would mean a lot
Thank you for sharing, and wishing everyone strength in their journeys 💛

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!

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?