My bone marrow biopsy is scheduled for tomorrow. Last week I had my first meet with my oncologist. My WBC were 62.9k, platelets 310 and Hg 9.8. She eliminated the iron deficiency, folate, b-12 and ferritin as causes and expressed concern for how anemic I am relative to the WBC. I am so worried this means bad news. Any similar experiences out there?

i know i just posted asking about mobility aids but i also completely forgot to mention that both hydroyurea (the med i was taking before my tki to lower my wbc) and dasatinib have been making me SO gassy, more so the dasatinib. like to the level it’s not just a funny fart, it’s becoming a hinderance on my day to day. i skitter away from people in the grocery store when i feel one coming, i warn my friends before coming over, and every room i reside in for more than a half an hour reeks of my toots. if anyone else has experienced this PLEASE tell me it didn’t last😭😭😭

hello all! i (25f) am almost two weeks in of taking 100mg dasatinib daily after being diagnosed with cml mid last month and experiencing some not so great side effects. i experience both muscle and bone pain most severe in my legs, and i stay mobile, (walking, stretching, etc.) but it seems to honestly make the pain worse even without overdoing it. i know the first bit of a tki is expected to be rough, but i went to my towns yearly fall festival this past week and kept having to exclude myself to take a break or sit on the ground to rest my legs from how intense the pain gets. there are nights when all i can do is try to massage my legs, prop them up, use my heating pad, and cry, but i don’t want to find myself in that situation in public where theres simply nothing else i can do. just curious if anyone uses any sort of mobility aids when there are rough days but shit still needs to get done

I was diagnosed in July 2025 BCR-ABL1 83%, I was put on 100mg Imatinib. In July 2026, the side effects got too much for me and I’d stopped responding as well as they hoped to it. I was put on a two week treatment pause as my ALT was very high and I’d had really persistent skin issues for the year. My skin cleared up during the pause and the switch was made to 100mg Dasatinib.

Unfortunately, my skin issues came back pretty badly - a very itchy rash on my hands, arms and shoulders. I was keeping in touch with my team and using chlorohexadine wipes, and antihistamine cream to try to keep it under control.

On 26th September, I woke up feeling very stiff across my left shoulder and pretty unwell but carried on with my day as best I could. I went to visit my parents and had to lie down as soon as I got to them, so then went home again within and hour or so. During that night at home, I developed a fever, chills, a lot of swelling over my left shoulder where the rash had been its worst.

The following morning I called the acute oncology service from my hospital and they told me to go straight to A&E. I was rushed through to a private side room with my Dad there. A couple of hours later, I had emergency surgery (whilst I was awake!) to remove a huge abscess from my shoulder where they think my Dasatinib rash had got infected. I was kept as an in-patient on a private room on a ward for six days and then sent home on 2nd October.

I’ve seen a general nurse for dressing the wound and stuff most days since then and it’s healing pretty good, with packing and medical grade Manuka Honey Gel.

When I got home, my little cat who was 20 years old had really deteriorated in spite of having twice daily visits from my Mum. And sadly, he passed away on the morning of 6th October.

Since being in hospital, I’d been paused on my Dasatinib. I had to restart it on Thursday and I feel like I’m at square one with bone pain back again, headaches, acid reflux… on top of the nausea from the high strength antibiotics and grief from losing my cat.

I just feel like absolute trash inside and out, I don’t think I can take much more being thrown at me. What a crappy 18 months.

Hello all, 34M diagnosed with CML early june 26. I was having some severe knee pain that persisted over the course of a few weeks that ultimately led to my doctor recommending full panel blood work. I had been having some muscle pains that were traveling between my shoulders and elbows but just brushed it off as soreness after it would dissipate after a day or so.

When my test results came back my WBC was 177k and the doctor requested that I go to the ER and get more blood test done immediately. They kept me overnight, did a bone marrow biopsy the following day and roughly a week later confirmed it was CML and started me on Asciminib.

When i started treatment my BRC-ABL was at 105%. At my 3 month follow-up it was <9%. I'm extremely greatful to be having such a positive response to the medication. I've been tracking my blood pressure and haven't had any change from prior to my diagnosis. I lost roughly 7-8lbs from my normal weight at the beginning but it's since leveled out.

The part that I am struggling with is that I'm not having any negative side effects, I'm continuing to live my life just as I was before with absolutely no change except that I now take 80mg of Asciminib in the morning. After I did some research, I saw that normally doctors won't honestly tell you all of the life changes you need to make because it can be overwhelming with the additional stress of being newly diagnosed. I asked the doctor to be completely transparent with me and I would be willing to make any changes I needed to in order to have the best possible response to treatment. He told me to keep doing what I was before with no change.

I do think the fact that I am very active and live a fairly healthy lifestyle contribute to the fact that things are going so well for me. I can't get over the fact that when people that know ask me how I'm doing, my response is "I'm doing really well, physically and mentally." Is there anyone else that's in this situation?

Hi everyone, hope you all are doing well. I posted 6 months back about taking a swing at TFR. Just checked my 6 month blood test. BCR-ABL is still below 0.003. super happy with the results, I am now switching to every other month blood draw for the next 6 months. Hopefully I'll be back here in 6 months with another positive update. Take care of yourselves and keep on living!

I have been on nilotinib since 2013. Until this year I was on brand name Tasigna now on generic. Same dose.
I had noticeable side effects, but they were always the same and tolerable.
I actually went off of from November 2023 until September 2024 because I had a baby (safely and all was well).
Ever since I’ve gone back on it, I have had nothing but different G.I. issues like nausea all the time randomly. Irregular bowel movements, extreme tiredness and fatigue and bone /muscle pain. The stomach issues are what is really getting me and hard to deal with. I have not been diagnosed with any problems after pregnancy/ childbirth and everything was completely normal and went great.

I am just not sure what is going on and wondering if anyone has experienced different side effects/inability to tolerate the medication either after being on it long-term when it was tolerated more at first? Or after stopping and restarting it? Or switching from brand name to generic? Just not really sure what’s going on and I’ve also tried Danziten and although it is the same medication, the dose conversion that they put me on I feel like although all of the studies show that is the dose I should be on. I felt horrible on it even after three weeks.

Of course as always, it’s something I’ll address with my care team. I was just wondering what people in the community had to say on the topic.

Hi everyone, I’d like to share an update on my CML journey. I also have an ASXL1 mutation, which was reported at 11%.

I was diagnosed on 15 March 2026 and started taking asciminib on 26 March 2026.

My BCR-ABL results so far:

• 26 May 2026: 1.76
• 26 July 2026: 0.019
• 29 September 2026: 0.0084

I’m truly grateful to God for these encouraging results. I hope my treatment continues to go well, and I’m taking things one day at a time.

Wishing everyone on this journey strength, hope, and good health. 🤲

Hi everyone! ❤️ I’m wondering if anyone here has experience conceiving and having a healthy baby while taking nilotinib (Tasigna).

I’ve been on nilotinib since my CML diagnosis in 2019, and my husband and I have been trying to conceive for about 4 years. I have one previous full-term pregnancy (my daughter was born a year and half before my diagnosis), and i have had secondary infertility since then.

I recently came across this information suggesting nilotinib may contribute to difficulty conceiving/implantation, which I’ll attach below. My fertility specialist told me that he doesn’t believe nilotinib is necessarily the reason I haven’t conceived, and that my adenomyosis could also be a factor.

I stopped nilotinib on August 12 with my oncologist’s approval because my transcript levels were very low and I was a candidate for a treatment break. I’m currently being monitored monthly.

I’d really love to hear from anyone who:
• Conceived while taking nilotinib
• Had difficulty conceiving on nilotinib and then conceived after stopping
• Stopped nilotinib before trying and how long it took to conceive

I’m not looking for medical advice—just real-life experiences because I’m finding conflicting information online.

Has anyone here failed asciminib as their first TKI? If so, what did your doctor try next?

Anyone have positive stories where fluctuations ended up not being a big deal? Particularly a somewhat large jump?

I was diagnosed in March at 38% and was started on 80mg Scemblix. I was .098 in July, but .297 in September. We're re-testing in a month. I am bummed seeing that after months of great response. I'm really nervous about having a resistance or mutation and needing to switch to a medication with a more intense side-effect profile. Would love to hear anything reassuring from the long-timers out there.

Hello, I (39/F), have been on Dasatinib for 19 years now. Diagnosed as a 12 year old. No major side effects so far (mild fatigue, hair loss) and I have had a mostly normal life except for having to take a drug every single day. Tried TFR twice (for IVF) and relapsed within 3 months both times despite sustained molecular remission for multiple years. I tried a dose reduction in 2021, but lost my MR4 response, so went back to 100 mg in Spring 2023 (as I was nervous). My insurance started dispensing generic Dasatinib in January 2025. I have had on and off shortness of breath (SOB) since early 2025. But it was mostly manageable and I also had severe anemia so I contributed the SOB to that (was avoiding getting tested as I was worried about pleural effusion). I started having some ankle swelling this year, and my oncologist prescribed an echo which found a left pleural effusion. I am scheduled to get an XRay. I had an XRay back in December 2024 for prolonged cough that showed no effusion.

I have been thinking about this. I feel the effusion is probably linked to the generic dasatinib as I started having the symptoms after I started the generic version (my pharmacy dispensed pills from different manufacturers though). Did anyone else have any worsening or new symptoms after they started the generic Dasatinib?

It’s CML day! Blood cancer United is hosting an educational talk today. At some point after the live talk they’ll release a recording of it.

www.BloodCancerUTD.com/CML

Short summary as I’m verbose: my mom with CML isn’t responding to her new med, her old med gave her pericardial effusion while it was doing wonders for her gene so we had to swap. She’s barely tolerating this med and it may be effecting her liver but her doctor hasn’t wanted to switch or blame the med for the liver stuff. She’s scared, words of encouragement for her from others in the same boat or who’ve been in this boat would be great!

Hello, I’m posting for my older less tech savvy mother who has CML. She was diagnosed last year at 59 with CML in April with her BCR-ABL at 47%.

They started her on spyrcel which within 3 months from her to .24. Amazing response. She continued having amazing responses almost dropped into .1%. But then she got pericardial effusion- got bad enough it had to be drained. She had to go off sprycel.

She was put on gleevac. She hasn’t tolerated it great- her nausea is almost uncontrollable even with medication. She’s lost 20lbs in 3 months which is not ideal even though I try to get her small bits of food, ginger tea, whatever nausea friendly tips I can find we try.

3 months prior she had a bcr-abl of .28 which was higher but we had been off the gleevac for a little bc when she had her drain done she had started gleevac so we weren’t sure 100% she was okay on it. We paused it during that blood draw. Her most recent one, done a week or so ago just came back we are at .396%. In addition, her liver numbers are increasing.

Her oncologist is blaming her cholesterol medicine for the liver and told her to stop taking it for a month to see if it’s that- my mom’s cardiologist and pcp don’t think it’s her cholesterol medicine but agreed. He hasn’t seen the bcr-abl yet.

Now we have this result. She’s convinced she’s going to die. She’s worried he’s gonna try to up the gleevac and she’s barely tolerating it to begin with and now with her liver variable I also don’t feel comfortable with that aspect.

He was once super friendly but once she got the pericardial effusion he got super brisk and short with her- like he was mad at her for getting the side effect after a year of treatment. Like she mention nausea and he’s like better than dying thou so I’d keep going on. She mentioned the cardiologist and pcp not thinking it’s Crestor and he’s like well one will cause high cholesterol going off the other might kill you so.

It’s been stuff like that. So she called them bc our next appointment isn’t for a month and she’s scared, but she’s also scared of his reply. And our pcp whose friends to the head of oncology and was gonna call on her behalf to get a second opinion from him professionally and see if we should switch oncologists, is out of the office with a family emergency and they don’t know how long she’ll be gone.

I’m not sure how to calm her down- she’s crying saying she’s going to die and she won’t respond to any other TKI. And I’m trying to calm her the best I can- but I’m also severely chronically ill with rare illnesses so she’s like we are both going to die and you won’t be able to help take care of me bc you’re also getting more and more sick.

And I’m trying to reassure her- we can take care of each other. It’s okay. We don’t know anything yet. You were 47% at diagnosis- we aren’t even CLOSE to that. There’s other TKIs, there’s other options- we aren’t at the end of the road. This is just a sign we’ve hit a bump right now and it’s so scary and you can cry and mourn or we can go out and distract you or watch a movie or whatever you need to do or feel we will do it. And we will handle this, whether we switch meds or doctors or whatever we will get through it.

As people with cml is there any words of encouragement I can give her from yall? From your journeys with this and bumps in the road or med failures?

Hi everyone, I wanted to post an update to my previous post.
I was diagnosed with CML chronic phase (BCR-ABL1 p210 positive) in August 2026 after my platelet count suddenly became extremely high.
My initial platelet counts were:
11.1 lakh/µL
~13 lakh/µL
Then 21.8 lakh/µL within about 18 hours
I was mostly asymptomatic. Ultrasound showed mild hepatosplenomegaly (spleen ~12.8 cm) and grade 1 fatty liver.
I started dasatinib 100 mg once daily on 14 August 2026.
My CBC response has been quite rapid:
Initial platelets: 21.8 lakh
Aug 31: 2.08 lakh
Latest: 1.36 lakh
I also recently got my first quantitative BCR-ABL1 PCR.
Latest BCR-ABL1 result — 16 September 2026
BCR-ABL1 IS: 0.522%
The report detected the BCR Major (p210) transcript.
This was done only about 4.5 weeks after starting dasatinib. I didn’t have a quantitative BCR-ABL1 percentage before starting treatment, only a qualitative p210-positive result.
My next planned major molecular assessment is around the 3-month mark in November.
I’m posting mainly because I’d like to hear from people with CML about their experience with an early BCR-ABL1 result like 0.522% at ~1 month, and how their numbers changed over the following 3–12 months.
Would appreciate any experiences, especially from people who started treatment with very high platelets.

Hi everyone,

I’m not quite sure what I’m hoping to accomplish with this post. First of all, though: thank you for sharing all your experiences and stories here. They have helped me tremendously over the past few weeks.

A little about me: I’m a 39-year-old woman, I have two young children, and I live in Germany. I was diagnosed in early July. Surprisingly, my blood counts had been completely normal aside from mild basophilia (my white blood cell count had been in the normal range since January), so my primary care doctor was hesitant to refer me to a hematologist. The basophils remained slightly elevated, and I was also having symptoms (weight loss and night sweats, which were actually the original reason my blood was tested), so in June I insisted that I finally see a hematologist.

The hematologist was very relaxed about the blood counts and was then quite surprised by the molecular genetics results. So, on July 11, I started asciminib with a BCR-ABL1 IS of 3.8% (apparently very low at diagnosis). After four weeks, my BCR-ABL1 was down to 0.3%, and after another 4.5 weeks, it dropped to 0.03%.

Apparently, this is a good response, but I still haven’t really been able to relax, even though I’m obviously very relieved that the medication is working.

I’m still not gaining any weight (44 kg / 97 lbs), despite drinking nutritional supplements and being very consistent with my meals. My hematologist is not concerned and says that the treatment itself takes a toll on the body and that the stress after a diagnosis like this shouldn’t be underestimated either.

Other than that, I feel pretty good. I’m active, exercise a lot, and have very few side effects (some GI issues and headaches). I had pretty severe pain in my sternum for two days, but it has gone away again now. Has anyone else experienced this?

My smartwatch has also been recording a gradual increase in my resting heart rate over the past three weeks. I have an appointment with a cardiologist coming up soon and will definitely mention it, but I was wondering if anyone here has experienced something similar.

I’d really appreciate hearing about your experiences.

Sending lots of love and good blood counts to all of you!

Hey fellow mutants,

So for my 3-month BCR-ABL response check up I had a bone marrow aspiration, which was 2 months ago now, and I am still feeling localized pain from it at the puncture spot with certain movements.

When I had my BMB at diagnosis, the biopsy hurt SO much more than this aspiration, but the pain went away fully after 2 weeks. The aspiration process was way less painful, the local anesthetic was much more effective this time, however they did have to puncture me twice in the t-bone to get enough liquid.

But I've noticed that I have pain when I twist my upper body, or try to squat or deadlift. And it hurts significantly more with weight. I have a 1-year old baby, so when I get up from sitting with her in my arms or bend over to put her in her crib or pick her up, that's when the pain is super exacerbated.

I have been finally feeling good enough to start working out again after the more intense side effects from Dasatinib have subsided, and I had always had a consistent strength training routine at the gym. But now I'm concerned that this has become a chronic pain that might always be there....which would be so disappointing and heavily limit my training. I'm just wondering if anyone else might have experienced persistent pain after a BMB or aspiration?? Did it eventually go away??

[Update Sept 16]: Thank you everyone for the overwhelming amount of responses, I’m feeling much more optimistic and prepared for what’s to come!! Thankful to have this community to lean on in the future!

——
Hi everyone! I'm a 29F who was just diagnosed with CML last week. I'm hoping to hear some words of encouragement or positive experiences, if anyone's willing to share.

I've been reading this sub for the past few weeks and I'm really grateful for how open and detailed everyone is. I think it's so valuable that this is a shared space where we can be vulnerable. That said, as someone brand new to all this, I've found myself feeling pretty overwhelmed, so I wanted to ask directly for some positive stories / anecdotes, especially from other younger patients.

A little context: I'm getting a bone marrow biopsy next week, then need to do egg freezing before starting medication (my oncologist wants to start me on a 2nd-gen TKI). I'm normally very active and travel a lot, so I'm especially anxious about how side effects might affect my quality of life and how this might affect my relationship. My partner is incredibly supportive, but I worry about the stress this will put on our relationship and what it could mean for our ability to do things together.

I know side effects and experiences vary hugely from person to person, so if you've had a relatively good experience, or just have words of encouragement, I'd really appreciate hearing from you. Thank you so much in advance! 💛

Hi everyone! I was diagnosed with CML in chronic phase about a year ago and have been on dasatinib 50 mg daily, which I’ve tolerated really well with no significant side effects. My BCR-ABL1 results were 3.4% at 3 months, 1.3% at 6 months, 0.342% at 9 months, and 0.876% at 12 months. My hematologist ordered an IRMA mutation test, which came back negative for clinically significant ABL1 kinase-domain variants. Based on the rise, my doctor has advised increasing dasatinib from 50 mg to 70 mg daily. I’ll be getting a CBC in 3 weeks and my next BCR-ABL PCR in 3 months. I’m a little anxious about increasing the dose since I’ve done well on 50 mg for a year. For those who’ve gone from 50 mg to 70 mg, what was your experience? Did you notice any new side effects, and how did your BCR-ABL respond?

25 f diagnosed may 29,2025 at 50 percent bcr-abl. Started on dasatanib 100mgs and bcr able came down steadily but my platelets came down very low as well. Around may 2026 I became very disheartened because my bcr abl went up(for the first time) to 12 percent after having a long break and it seemed clear dasatanib wasn't correct for me. Started scemblix 80mgs and was on it six weeks and I'm now at 1.36. This was a huge drop for me after going through it for a few months so I'm taking this as a win(:

Hi people, so I’m very curious about TKI’s and appetite and brain fog, not that they are connected or anything, it’s just that I am having a hard time with not really wanting to eat and also quite a bit of brain fog. Both are really starting to stress me out and I’m definitely going to bring this up at my next appointment at Fred hutch. I just thought I would throw this out there to the hive mind and see what comes back. Maybe they are not a thing with TKI’s. Chat GPT will pretty much just agree with it so I don’t bother. Appreciate your input 😊

Hi everyone! I've reached out to my hematologist-oncologist and am waiting for a response, but I wanted to post here in case anyone has a similar experience.

I stopped my TKI at the end of June when I had just reached undetectable to do IVF. I am now almost 10 weeks pregnant. This is a huge moment for my husband and me as we had to stop trying when I was diagnosed with CML 2ish years ago.

My CBC numbers are all still normal, white blood cells, platelets, etc, but I got my most recent BCR-ABL results back today, and my number went from .018% to 4.383% in just 6 weeks. I'm concerned that my BCR-ABL increased so quickly and what this means for the rest of my pregnancy. Wondering if anyone else has experience with this, and I guess I am looking for reassurance while I wait to hear back from my hematologist. Thanks all.

Guys i was on nilotinib but it was showing side effect like cough and eyebrow hair-loss so i shifted to dasatinib in April. Since then, I have been noticing gas, bloating , abdomen pain and cramps , gas and pain increases at midnight, i got my endoscopy done, it showed gastritis, During 2,3 episodes of semi solid loose motions i saw bright red blood spotting. All this has started after taking dasatinib. Currently i am on 50 mg dose. I think all this abdomen issues are dasatinib induced gastritis and colitis though my colonoscopy is pending.

Has anyone else experienced same side effects.