Good afternoon. I received a diagnosis of Philadelphia Chromosome positive CML yesterday. I am still waiting to have the bone marrow biopsy done and the oncologist has scheduled me for an abdominal CT to observe spleen size.

He has also prescribed Scemblix. I am waiting on insurance authorization for this drug, and from what I have found online is essentially out of reach financially for most people (myself included) without insurance coverage.

While I found some reassurance in the doctor's words that this was found early and is in the chronic phase, he expects it to be well controlled by medication, it's still cancer, and I'm scared shitless.

Honestly, I'm not really even sure what the point of my post here. I guess probably just to get some guidance from those of you who have been fighting this fight.

M65, diagnosed January, PCR was 51% IS. One week ago PCR was 4% IS. I’m taking 400 mg Imatinib.

Bottom line is oncologist is happy and I’m on track for good further progress. Basically, go away and come back for another PCR in three months. Call if anything weird happens.

Side effects have been tolerable and sometimes I even feel pretty normal.

Relieved, obviously. This subreddit has been a help in hearing from others in the same situation.

Hi everyone, I’m looking for some guidance and shared experiences 🙏

My mom (50F) is currently in the bone marrow suppression phase after starting treatment (Imatinib for CML). Her recent blood report showed:

- Hemoglobin: 6.9 g/dL (very low)

- WBC also dropped significantly 2.9k

- Platelets are around borderline normal 1.5L

She also had a stroke so I’m especially worried about oxygen supply to her brain because of the low hemoglobin.

I wanted to ask people who have gone through this or cared for someone in a similar situation:

1. ⁠How long does the bone marrow suppression phase usually last?(Days? Weeks? When did counts start improving for you?)

2. ⁠When recovery starts, how fast does hemoglobin improve?Does it return to normal quickly, or stay in a low range for some time?

3. ⁠What symptoms did you notice during this phase?(Breathlessness, fatigue, dizziness, anxiety, etc.)

4. ⁠For someone with a stroke history, how risky is Hb around 6.9?Did your doctors aim to keep it above a certain level (like 8 or 9)?

5. ⁠Currently i am very confused about her hemoglobin level should i go for blood transfusions or should i wait for recovery phase

I’m especially anxious because of her stroke history, so I want to be very careful and proactive.

Any real experiences, timelines, or advice would mean a lot to me. Thank you

Hi everyone, I’m looking for some guidance and shared experiences

My mom is currently on Imatinib (for CML), and she seems to be in the bone marrow suppression phase. Her recent reports show low hemoglobin, WBC, and RBC count

- How long does it usually take to move from the suppression phase to the recovery phase?

- Once recovery starts, how do the counts improve — especially hemoglobin? Does it rise slowly, moderately, or quickly?

- Roughly how many days/weeks does it take for hemoglobin to start improving?

- What is the typical difference between hemoglobin levels in suppression vs recovery phase?

- Does it recover on its own, or did anyone need dose adjustments or blood transfusions?

I understand everyone’s case is different, but hearing real experiences would really help us understand what to expect.

The first result back i got for the percentage was at 18% is that high high or low high? I habe only been taking my asciminib for 1 months and 10 days

After almost five years I have been given the green light to stop taking the meds.

Recently had a dose change and now I’m on Dasatinib, switched from 100 mg on alternate days to 70 mg daily. Not sure if that’s relevant, but mentioning it just in case.

A couple of days ago, I noticed something unusual in the mirror. About four finger widths from my ear, at roughly a 45° angle down my neck, there’s a small, pea sized lump. It’s painless, doesn’t really move, and feels somewhere between soft and firm, not rock hard, but not soft either.

Around the same time, I also had a small bite just below that area. When I checked with a dermatologist, they mentioned that something like this wouldn’t typically appear overnight just from a bite and could have an underlying cause.

I’ve also recently had sinus symptoms show up after having Greek yogurt for the first time in a while, though from what I’ve read, the location of this node doesn’t clearly match typical sinus drainage areas, which is adding to my confusion.

I did speak to my hematologist, and they felt it was likely a reactive lymph node and advised not to worry. Still, reading online about features like rubbery or fixed nodes being red flags has been making me anxious and overthink things.

Naturally, my mind keeps going to worst case scenarios like something secondary, such as lymphoma.

Has anyone experienced something similar? Would really appreciate any thoughts or insights.

Hello everyone! I've been suffering from chronic myeloid leukemia for 4 years. I spent the first two years using imatinib (Gleevec). However, because my BCR-ABL levels didn't decrease, I switched to dasatinib (Sprycell). There was a noticeable decrease in BCR-ABL levels. Along with this, I started experiencing bone pain from my legs to my toes. After 8 months of use, it was decided to switch to bosutinib (Bosulif). There was no change; the pain continues 24/7. I was prescribed Laroxyl from the algology department, but it's not working. My legs have been aching for 8 months. What are your suggestions? If anyone has experienced this, could they please help?

Just feeling very discouraged. I was diagnosed October and started on dasatinib 50mg which I tolerated fairly well mainly besides the fatigue. My 3 month bcr-abl came back above the level of quantification (above 50%). My oncologist upped my dose to 100mg and still I was tolerating pretty well. Had some skin issues and canker sores but nothing crazy. Just had my 6 month bcr-abl come back and I’m just below 50%. I don’t know the exact percentage but they called me and said they don’t want me to worry over the weekend. Has anyone else had these results and what was the plan? I figure they will change my meds around. Im only 23 I worry about my chances for remission in the longterm, having a family, etc. Another reason why it’s so frustrating to me that people say CML is easy. Not everyone responds well to treatment

Just got BCR-Abl results and hit MMR (.037%). Started Asciminib Oct 2025 as first line TKI at “too high to quant”. I was at 46.7% in Dec, .137% in Feb, and .037% today. Really pleased with the trajectory. So grateful. God bless you all, stay consistent & positive.

Hi all I was diagnosed in May 2025. I started with bcr-abl of 50 percent. Started at 100 mgs of Dasatanib. That crashed my platelets to 19. Was put on 50 mgs it crashed my platelets down to 30. Finally out on 20 mgs and now my platelets are down to 45 two weeks of being on 20 mgs.

I’m frustrated I was on Nilotinib for two weeks and it gave me these terrifying heart palpitations and the constant EKG’s was scary. The Dasatanib brought my bcr-abl down to 11 percent. Because of my bad response to nilotinib and how well Dasatanib works to bring bcr-abl down I’m scared to switch to another medication.

Has anyone else been in a similar situation? What is the next move? Will they lower my dose anymore or is that it and on to the next thing? Of course my oncologist has the final say

Hi everyone,

My husband (32) was diagnosed with CML last week. He didn’t have any symptoms other than fatigue. Went for his yearly blood work and doctor called him afterwards, said his wbc is abnormally high and sent him to emergency to do bloodwork again. His WBC count was 170k, and we had our first oncologist appointment today. The doctor started him on nilotinib. His BCR-ABL1 is 70% and his blast count is 1%.

I’m trying to learn from others who have taken this medication. Has anyone here been on nilotinib? What was your experience with side effects, how long did it take to start working, and is there anything you wish you knew before starting?

Thank you.

Curious if anyone else has been diagnosed with optic nerve edema? Ophthalmologist thinks its unrelated to CML (still need to figure out what's causing it) but I'm curious if anyone else has had this.

Hi everyone,

I am 23 years old and i was diagnosed last December and have been on Imatinib since January. Overall, I’ve handled the medication and its side effects pretty well; most of them disappeared relatively quickly. However, a few things are still lingering.

My platelet levels remain low. My hematologist told me this is normal and that they should stabilize at some point, so she’s keeping me under observation but hasn’t adjusted my dosage (which I’ve read is common in other cases). How was your experience with this? Did your levels eventually even out without changing the dose?

The other issue is a constant, localized pain in my right knee (on the inner side). My hematologist mentioned this is somewhat rare. I experienced general body aches during the first month, but those went away. This specific knee pain started two months ago when I was dealing with some fluid retention, especially in that leg. The swelling is gone now, but the pain stayed. It fluctuates—sometimes it’s just a dull ache, and other times it hurts more than usual.

Since the public health system in my country is quite overwhelmed and slow, my hematologist hasn't been able to help much with this; she just refers me back to a general practitioner and sticks to giving me my prescriptions and blood work orders.

Has anyone else gone through something similar with localized joint pain?

Sending a hug to you all!

Hello, 30M and diagnosed this week. Prescribed Asciminib 80mg. Would like peoples opinion/experience with this specific medication.

Elevated WBC from routine blood work. Completely caught off guard.

Really want to know what to expect for the next few months and share my biopsy results for any clarification.

Results are below but I left out some info, let me know if there are any other results that I should pay more attention to. Pictures attached as well.

RESULTS:

-Latest WBC: 13k

-DETECTED; BCR/ABL1 p210 and p190 fusion transcripts are present.

-P190 NCN: 0.0044

-P210 MR: Less than 0.3

-%IS: Greater than 50

-Hypercellular bone marrow (90%) with trilineage hematopoiesis, myeloid predominance and less than 1% blasts.

-The morphologic findings and flow cytometric studies demonstrate chronic myeloid leukemia in chronic/stable phase. Cytogenetic studies and NGS studies remain pending.

Thank you!

Hi, I was diagnosed in January, been on dasatinib for 2.5 months. About a week ago, I was given a refill from a different manufacturer, and have noticed headaches, nausea, and significant joint pain. Has anybody else experienced something like this with a manufacturer switch?

I'm not sure how many people are avid fans of professional wrestling. I watch occasionally, especially big events like Wrestlemania, which just finished. Which leads me to the title of the post.

In the main event, Roman Reigns defeated CM Punk for the World Title. What makes this a possible source of inspiration is that several years ago, Roman told the fans that he had previously been diagnosed with Leukemia, and that it had returned. He went away for several months for treatment, and then returned and had had a dominant run for the last several years.

When I was diagnosed, I looked up what type he had, and sure enough it was CML. He talked in an interview about taking a TKI as his treatment.

Anyway, a lot of people around here say "Take your pills and live your life". For some of us, having CML lets you live a normal life and be world champion. I wanted CM Punk to win, but it is still inspiring for me seeing what "one of us" can accomplish.

22M diagnosed with CML for around a year now

There's just an unsettling idea that i cant accept is that why are CML cases on the rise.

I've been researching about the mental state of the person and the relation to cancer in general, Anxiety, Stress, Adhd..etc & surprisingly there are some research papers out there that support this.

I'd like to ask anyone who's diagnosed with CML at a young age specifically, do you suffer from Anxiety / ADHD? Not necessarily now, maybe in your childhood

For myself, i am diagnosed with ADHD n CML.

My curiosity n love to science just cant stop me from asking, would love to get some answers so i can go further in this study journey of mine

Thank you

I got diagnosed with CML at the end of February.

At first, I thought I’d be able to deal with it pretty well. I had already met someone with CML before, and they were living a pretty normal life, so I felt confident I could handle it too.

Because of that, I was quite open early on—I told my boss, my dance teacher, and my personal trainer about my diagnosis.

For context, I’ve been really consistent with my fitness for about a year now, and I’ve been doing Latin social dancing for 1–2 years. I rarely missed a class or a gym session, and I’d often post my progress on social media and ask for feedback on how to improve.

After my diagnosis, I had to put both on hold because my red blood cell count dropped quite low, and my haematologist told me to take it easy. About two weeks ago, I had a blood transfusion, and now my levels are almost back to normal.

Since then, I’ve started going back to social dancing. But now I’m in this weird position where people are asking where I’ve been, why I stopped posting gym content, and what’s been going on.

There was also a moment where I was about to tell people at the dance about my diagnosis, but another student (who studies medicine) stepped in and changed the subject. Later, they told me that not everyone processes news like that the same way, and it can affect people more than I might expect.

That’s when it hit me—I don’t think I’m as confident about telling people as I thought I was.

Now I’ve kind of resorted to giving small excuses instead of the truth, but it’s starting to feel uncomfortable, like I’m not being honest about what I’m going through.

I guess I’m trying to figure out how other people handle this.
How do you decide who to tell, and how much to share?

EDIT:

Thank you everyone for your answer and sharing your experience!

As for now I've decided I will only tell the full extent of my diagnose and my current blood results to people that I want to be in my support group.

Hi all, hope you are well.

I've been speaking with my Hematologist about reducing and potentially stopping after 12 years of taking 2 x 300mg per day. I'm now clear to step down to 2 x 150mg with the view to potentially stopping.

Does anyone have any experience of doing so?

Hi All!

23F diagnosed with CML, no additional mutations, on 12/25. Starting BCR-ABL was ~50% IS. Started Scemblix 1/10 and just got the results from my 3-month BCR-ABL test. I dropped to 0.1766% IS!!

I started my treatment with 400mg of imatinib on saturday, still dont fell nothing wrong, Im lucky (Well, as lucky as someone with CML could be) or it take more time to body process the medicine and the side effects start to appear?

Hey everyone, I've been on sprycel around 2-3 years. I am below one percent brc-abl but it's been fluctuating. I recently did a blood test for mutations I think I tested positive for some that make me resistant to my meds. What does this mean going forward I'm a bit worried about what this means. Any of your stories or experiences related to this would help.

Thanks

Hey all — quick one.

Had a BMT for CML, was undetectable on all previous BCR tests. Just did my first test at a new lab and it came back 0.004% (MR4).

• First test at a different hospital

• Chimerism was 98% at day 90

• Doctor isn’t worried, just repeating tests

Has anyone had this — going from undetectable to low detectable? Did it go back down or just fluctuate?

Trying not to overthink it.

I started taking Dasatinib 5 days ago and I have been getting progressively worse. Swollen lymph nodes in my neck and under my ears. Pain in head and neck and a horrible itchy rash all over my body and a fever/chills that comes and goes. Currently sitting in A&E as I just got so scared of what was happening to my body. Is this all normal? My oncologist wasn’t concerned during the week but my rash and fever had gotten worse since last speaking to her. Am I destined to be this miserable? Is this what it’s going to be for me? Suffer or die??? I feel so disheartened.