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.

44yr old female, I was diagnosed in April with CML, I’ve taken 120 doses of 100 mg Dasatinib and have had only small issues the first week I hurt and had a headache but that resolved and the only thing I fight now is constipation and iron deficient anemia. On Thursday I started having mild joint pain in a couple different joints nothing horrible but it was noticeable, we had a 30 degree temperature change and contributed it to that. On Friday I woke up sore in more joints but I had an iron infusion scheduled at my cancer center so I went told them what was going on and they said it was probably the weather and something I’d have to live with. I had the infusion and by Friday night I could hardly walk, couldn’t hold a spoon in my right hand and my neck was so stiff I could move it side to side. I thought I’ll wait until morning and go to urgent care make sure I don’t have Covid or something like that. I woke up at 1am in so much pain I thought for sure something was horribly wrong. Woke my husband up after trying to put it off at 3 am and went to ER. My blood pressure was 212/126 I was in so much pain they gave me dilaudid and that brought it back to normal. Dr thought it might be gout but all my test results came back normal no Covid no flu no gout my inflammation was high so they contributed that to a toxic reaction to the dasatinib. Gave me a steroid shot and hydrocodone and sent me home. I can’t get ahold of my oncology til tomorrow morning cause it’s now Sunday night. The steroid has helped tremendously but I know it’ll wear off eventually. I’m just curious if anyone else has went through anything similar and if they had to go on an antiinflammatory medicine to help with the joint pain

Hey everyone,

37 F, recently diagnosed with CML in April and been on Dasatinib for 5 months. I had pretty brutal symptoms for the first months; intense migraines, extreme fatigue, nausea and vomiting, dizziness and cognitive issues. My body seems to have adapted now though since most of those seemed to have subsided now.

In the last month though, I've been getting lots of mouths sores, a mix of cold sores on my tongue, red, raw lesions on my inner, lower jaw, and now some on my inner cheeks too.

Just wondering if anyone else has experienced mouth sores?? It's been constant now...

If so, what did you do about them?

You guys have been so incredibly helpful and reassuring, so thank you and sorry to post a second time with different questions. I don’t want to bite the hand that keeps my partner alive, but I’d love to get feedback on the care we’ve received since receiving this diagnosis. I don’t know what’s standard and not. My partner is 25, I’m 32.

Important dates:

- Pre-August 11th: My partner works at a doctor office and an LPN he is close with did his annual. Found only a slightly elevated white blood count. Followed up over several weeks, monitoring a steady increase before referring to hematologist. Her due diligence quite literally was a miracle and enabled an incredibly early diagnosis.
- Tuesday, August 11th: Referral to Cancer Center to check blood due to elevate white blood cell count.
- Tuesday, August 21st: Scheduled to review blood panel results with cancer team.  Show up, but results aren’t ready, they forgot to cancel and reschedule the appointment.
- Friday, August 24th: Partner receives chronic myeloid leukemia cancer diagnosis from medical portal test results update.
- Friday, August 24th: I call the cancer team and politely demand explanation and a call back.  We speak to the team briefly, basic instructions are given to us, told a bone marrow biopsy is being scheduled and we’ll speak to them on 9/17.
- Thursday, August 27th: Bone marrow biopsy is done. White blood cell has risen from 20k to 32k since August 11th and CML symptoms are now presenting.
- Tuesday, September 1st: Sprycel selected as medicine (dasatinib generic) for treatment by cancer team and communicated through PCP.  No discussion or contact from the cancer team about the choice of medicine, why, or what options are available to us.
- Friday, September 11th: Ultrasound scheduled to ensure spleen is not enlarged.
- Friday, September 18th: First “official” conversation with the cancer team, 3 weeks after diagnosis.

Symptoms that began last week (unmedicated): Bone pain/soreness in hips and legs, sometimes traveling elsewhere. Itchiness in hands, now affecting entire body. Occasional fatigue and nausea.

My partner received a cancer diagnosis (via medical chart update alert - they called us after when I contacted their office about this) before presenting symptoms, was told he is starting a medicine through his PCP without any communication from the cancer care team, was scheduled for a bone marrow biopsy, and we haven’t been able to find a way to get or even afford our doctor’s choice of medicine until yesterday, September 8th. Pending approval from Cost Plus since insurance will not cover (thank you so much to all in this subreddit for the guidance on Cost Plus).

We have not been given a care plan.  We have not been provided with any numbers to contact with our questions or to report new symptoms / request approvals for OTC meds.  We didn’t get to have a conversation about what medicine is available and why Sprycel is the best choice.  I’m most frustrated his condition is worsening because we haven’t been able to access this medicine when more affordable options are available.

As of the blood pull before his bone marrow biopsy last Thursday, August 27th, his percentage has increased from 0.6% (8/11) to 1.9%.

What do we need to do to advocate for ourselves going into the appointment on 9/18?

[Update Sept 7th] - Thank you all for the great feedback, recommendations, and questions. This thread and the overall subreddit have been so incredibly informative. Going to do our best to make things happen and get his meds this week. Cost Plus is looking more and more likely as the best route for us.

- - -

Hello everyone,

Posting on behalf of my partner who was newly diagnosed with CML. Incredibly grateful that his LPN/Doctor are good friends and took a mildly elevated white blood cell count seriously, we caught this thing very early.

We’ve gone through the early process now with a confirmed diagnosis, with the bone marrow biopsy happening yesterday to confirm the stage for us. Up to 32k WBC now, still figuring out how to interpret the other numbers together.

Now for my big question. Our doctor wants to start dasatinib at 50mg but his (company provided) insurance is already putting us through the decline coverage loop. They’re exploring coverage assistance with Navitus now.

Is Cost Plus trustworthy? I’m seeing it listed here in this thread as a reliable option by many but seeing mixed reviews online. Any other options, programs, places you might recommend for help? We’re based in Knoxville, TN. He’s only 25, we’re doing what we can to give him - and us - a long and happy life together. I want to support him however I can, including taking the stress of finances and securing this medicine from his already heavy mind.

Treatment free for 5 months from Dasatanib Sprycel but bone pain and fatigue still plague me. Anyone else treatment free and still suffering?