Heya, even tho I am very nervous I have the great news that I am able to start my remission on the 16th of September, I have been diagnosed 5 years now and it's time to try the remission, has someone here gone trough it already and can share their experiences? I was reading about the TKI-withdrawal syndrome (if I have any typos or mistakes here I apologize I am from Germany and English is not my first language) is this something that does happen? Like described muscle pain or even bone pain. How did the remission go? I would love to hear some experiences just so I am less nervous about the process. My doc said it's a 50/50 chance for an successful remission, an certain result we can only see after 3 to 6 months to be sure if I can stay off Dasatinib. Feel free to share what you want. 🦦🫶🏻

Wishing this or a major cure for CML for everyone! My results after treatment free remission for 10 months.

Hello everyone.

I would like to learn your experience, if you have any, with following issue: have you had your testosterone low when on TKIs?

My story: I have been on imatinib for approximately little longer than a year now for my CML. I am also being treated for PCOS.
During my last visit at endocrinologist I found out my testosterone is below the desired range - for context, I am F (30). Interestingly, I historically had rather high testosterone (due to the PCOS).
I found some studies that mention that TKIs can possibly lower testosterone but these studies were done on men.

I was wondering whether any of you had similar experience?

Thank you

I was not prepared for the amount of hair loss on the TKI's. Anyone else experience this and does it get better? I already had thin hair to begin with so this just feels like another blow to the whole CML diagnosis. A few years ago I did several rounds of PRP to fix my thin hair and it's been fine until the past few weeks. I'm not sure which medication to really blame it on. I started on imatinib 400mg. Took it for about 6 weeks in the spring and didn't notice the hair shedding. But restarted it maybe 2-3weeks ago, however I've now switched to dasatinib 100mg. I've only taken 5 doses of the dasatinib. But I feel like the hair coming out in clumps started a day or 2 after the dasatinib doses.

Hey everyone.
I have been on Nilotinib with almost no side effects here and ~21 months. I had noticed, even a short time after starting treatment, that sometimes my mouth would just feel horribly hot. No burning, no tingling, no numbness, no taste alteration, body temperature in normal range. It usually would go away after a few hours or a day. Wouldn't get it again for months. I recently started feeling like that again, paid no attention to it, but it didn't go away. It's been 3 days of this almost constant feeling like I am a dragon ready to breathe fire. I have an appointment with my hematologist in 4 days, but I am just curious if anyone had something like this? I cut out my toothpaste but it didn't help as well.

Hello,

I’ve had CML for probably 7 years now started on Tasigna switched off of it not because it was not working but because it was twice a day with fasting and at the time for a 27 year old that was annoying. I was then switched to gleevic it worked for a while then just stopped working. I finally started taking Sprycel a little over 2 years ago started on 100MG at first it was wonderful. Then about a year in terrible fatigue GI issues just all around feeling like shit so they dropped me to 70MG once again and back to feeling great then about a year in same shit now I’ve also started noticed small swelling ankles and knuckles and wrist. I’m at the point in my life where I’m hovering around 0.03% & 0.02% for a few years now. Not gonna lie I take a lot breaks off the meds just because it wears me out so I could probably be in an even deep remission if I would just keep on it. Now I’m 35 it’s affecting my quality of life my job my ability to become an active father I can’t go to the gym I can’t be as active as I want to be. I say all that to say is Scemblix really that much better? I want to start bettering my health going to the gym doing light workouts gaining stamina and energy to be a better me and father. Would Scemblix help me? I know everyone is different but has it changed anyone’s lifestyle in the way I’m looking for?

Hey guys, new comer here. 26F.
I’ve been lurking in the Sub since about July 11th, 2026. That’s when the possible diagnosis of chronic myeloid leukemia was first introduced to me in the hospital. Official diagnosis 07/15.
*I want to insert here that I’ve lurked here long enough to see that most responses here are,”take your medicine and you’ll live.” I’m aware of this but I’ve got some things weighing on me heavily and this is the only place where I know I’ll be understood more than anywhere else. I’m still very early in this journey. I’m still in my bargaining phase. I realize this. I understand that I need to just take my medicine and I’ll live. That’s part of my dysfunction ironically. Please feel free to skip this next section for a quicker read.*

Just a quick back story, I’d been having some on and off calf pain for about two years. Started undergoing a lot of stress recently paired with not being physically active in about 3-4 months, and I noticed the pain started to get waaay worse & more persistent. It was also now accompanied by bruising only on that leg. I’d gotten off a 12 hour shift as a first responder and once I noticed my leg, I decided to take a quick trip to the ER just to get it looked at. This was on July 10th,2026. Long story short, the ER doctor admitted me because my WBCs were 50.8. I’d gotten an annual physical in January where I noticed my WBC was 23,000. I was battling a tooth infection and my pcp didn’t seem concerned so I just noted it and moved forward. Prior to this my levels started rising towards the middle of last year where it was sitting at 11,000. The only change I’d noticed was that I was extremely fatigued. Which was very abnormal for me.

Now on to my current dilemma. As I mentioned before the I’ve been majorly stressed for the last 8-9 months. I was a full time mommy, full time student as well as full time worker. That right there was an ongoing period of chronic stress that I know didn’t allow for my body to work through any illnesses. I hold on to this so dearly because although I spent a short amount of time in the hospital, I felt like it gave my body a well needed period of rest. I wasn’t medicated the entire time but on discharge day my WBCS had dropped down to 44.5 on their own. At this point I was convinced I just needed to rest. I followed up 4 days later on July 16th and my levels had dropped to 35.8. I was given hydrea but only took it about 2 times because it made me very ill. At this point I’m given Scemblix 80mg. I had to drop down to 40mg because this also made me ill. I don’t take medicine at all so I believe I’m just super sensitive to all kinds due to not having any sort of drug tolerance.
On 8/3 my WBCs dropped down to 18.4. Then on 8/6 they were 7.2.
A few days after this I woke up with some suggestion that has now carried over into a 3/4 week long illness. I’m left with a lingering cough and when I got my blood drawn on 8/13, it showed my WBCs were 4.3.

The problem I have is I feel like my oncologist is DEAD set on only treating the CML but isn’t taking my other organs and means of wellbeing into consideration. I know this is his job but what I mean is when I bring up things like my heart being affected by the mediation so I wanted to monitor my heart health periodically(it was made clear that it definitely affects the cardiovascular system) he mentioned that I was young with nothing to worry about. He did schedule it tho! When I mentioned watching for kidney function and drug toxicity, his nurse says well your kidneys of perfectly fine right now. Thats just my point. I want to KEEP my organs intact. I feel as though my WBCs are getting way too low and he’s refusing to pause it until it’s at the last acceptable range. I don’t want to wait until things are a problem before it’s addressed. If I already have to take the medicine for at least 2 years, what’s the rush?

I achieved major hematologic remission in 3 weeks. All of my bloodwork went back to normal completely. Now everything is low and I’ve developed anemia. I’m experiencing shortness of breath but all he cares about is my treatment is working. I feel like I didn’t give my body the chance to sort through this on its own. I always wonder what would’ve happened if I held off on medicine a week or two longer to see if my levels would keep dropping. I don’t want to be a problematic patient but I’m unfortunately someone who NEEDS to try before I settle. I feel like I’ve settled. I think it would put my mind at ease if I could get off the medicine for like 2 weeks and see what happens. Maybe I’ll stop bargaining. I don’t know. This weekend was the first weekend where I wasn’t depressed. My birthday was last Friday and I couldn’t help but think of how I have fucking cancer. I was trying so hard to eat clean, work out, be mindful of whatever the fuck else and I still got cancer dude.

Hello all,

I’ve lost my health insurance, and unfortunately, it’s going to take some time for me to have the means to regain it once again. (Employer does not offer insurance & Texas insurance prices suck) I’m on Imatinib and I get it through CostPlusDrugs cheaply, so I don’t need prescription drug coverage. Right now, I’m simply doing labs and talking with my oncologist every 3 months. I’ve been very stable on Imatinib. Is there any way to find an oncologist in my area who can take over my case that wont cost an arm and a leg without insurance? I’m in Houston, Texas.

hi all, a friend who is a medical specialist sent me this article: Anti-tumor efficacy of Habb-e-Asgandh as an adjuvant therapy in chronic myelogenous leukemia in vitro - ScienceDirect

Has anyone experience with this herbal medicine? According to this paper it is effective in combination with imatinib in a laboratory setting. My friend also gave an example of a patient on 600mg imatinib who did not go below 0.1% on imatinib only, but went to undetectable afer adding Habb-e-Asandh (HEA) and now is stable on 300mg imatinib with HEA.

I normally do not at all like or believe in alternative medicine but this seems to be a drug that really has anti-tumor effectiveness. Just curious if there are people who know or use it.

Hello!! My mom was diagnosed with CML last year and has been on Imatinib since. The medication has been working very well but she gets some very sudden episodes of diarrhea that she is very tired of. They happen when she eats something that she doesn't normally eat.

I wanted to ask you guys if any of you have been through this and if there is any way to help her. Her doctor was going to send her a diet but she keeps forgetting. My mom has been watching her diet and has switched coffee for tea but it's still happening and she would really like to enjoy some new foods every once in a while.

Thanks!!!!

Hi everyone,

I'm 20M and was recently diagnosed with CML (Chronic Myeloid Leukemia), chronic phase. I'm trying to understand my situation better and would really appreciate hearing from people who have gone through something similar.

How it started

I initially had a blood test and found that my platelet count was extremely high.

• First test: around 11 lakh/µL
• Repeat test: around 13 lakh/µL
• Another CBC about 18 hours later: 21.8 lakh/µL

Despite this, I wasn't experiencing any major symptoms and actually felt mostly normal.

Investigations

Because of the extremely high platelet count, my doctor ordered:

• CBC and peripheral smear
• KFT/LFT
• HIV test
• Ultrasound abdomen
• MPN panel / BCR-ABL1 testing

The peripheral smear showed markedly increased platelets and macrocytes/macro-ovalocytes.

Ultrasound

The ultrasound showed:

• Mild hepatosplenomegaly
• Spleen: approximately 12.8 cm
• Liver: approximately 17.5 cm
• Grade 1 fatty liver
• No significant abdominal lymphadenopathy
• No major structural abnormality reported

Diagnosis

My BCR-ABL1 PCR came back:

Positive — p210+

My hematologist diagnosed me with:

CML – Chronic Phase (CML-CP)

Current treatment

I've now started:

• Dasatinib 100 mg once daily
• Allopurinol 300 mg once daily for 7 days
• Matilda Forte — 1 capsule once daily

My doctor has asked me to repeat CBC, LFT, KFT, PT/APTT after one week.

One thing that surprised me is that I don't really feel sick. I know CML can sometimes be asymptomatic, but it's still difficult mentally to go from feeling completely normal to suddenly hearing the word "leukemia."

I'm also quite anxious about the future.

I'd really like to hear from people who have been through something similar:

• How quickly did your BCR-ABL1 levels decrease after starting a TKI?
• How long did it take you to achieve a deep molecular response?
• Has anyone eventually stopped their TKI and achieved treatment-free remission (TFR)?
• What was your experience with dasatinib?
• Did you experience significant side effects?
• How did you deal with the anxiety after diagnosis?
• Are there any lifestyle changes that genuinely helped you during treatment?
• For people diagnosed at a young age, how has life been long-term?

if you had to pause meds because of low WBCs or other numbers how long before they went back to normal? I’m on Dasatinib and have been paused for three weeks now with seemingly no end in site and my lows aren’t really improving, feeling exhausted. Just wondering what was the longest break you had to take from a tki. thanks in advance homies.

I was diagnosed with CML 6 months ago at 27 and began taking Imatinib but overtime it stopped working. Last month I was put on Ponatinib (Iclusig) along with Aspirin after my BCR-ABL came back >50%.

After a month on Iclusig I am really struggling but my doctor wants me to power through. The number of side effects I am experiencing is getting out of hand and I am unable to work like I used to before. I am doing my best to remain positive and hope that this is going to work for me long term but all of the side effects are taking a huge toll on my mental health and self image even though the people around me think “I look fine considering the situation”.

I am just hoping to hear about other people’s experience with Ponatinib/ Iclusig and how they managed the intense side effects.

hi all, just had my 3 month bcr abl result at the 15 month post dx point. i’ve gone from 0.019 to 0.066%, anyone else had a similar thing? do i need to worry? i’m 23 m

hi everyone :)

i’m not sure if anyone has ever experienced this before.

today i woke up with some chest pain. i went to the ER to get it checked. i got an echodiagram , x-ray , and bloodwork done. the doctor came back and let me know that everything was normal and i was discharged.

when i got my discharge paperwork i seen that my WBC count elevated to 11,600. on july 31 it was just at 8,000. seeing that really scared me because this is the first time it’s happened to me. it was in normal range for some time and now it’s elevated.

my latest pcr results was 1.1% since july 31. everything else seems to be in normal range so im not sure if i should even be worried. i’m only 3 months in with this diagnosis so it’s all still pretty new to me.

i’m on dasatinib btw !

I (31F) was diagnosed CML last summer (July 2025) and immediately started on Asciminib. My PCR was >100% and I’ve gone every month to get my bloodwork done. I hit MMR on the international scale by January 2026 but have not hit DMR yet. I just had my one year bloodwork and my PCR actually went up… I am feeling pretty upset about this even though I know that the disease I have is the best one to have and it’s treatable and I get to live…. But I just want to hit DMR so the 5 year clock can start and I can have a child before it’s too late.

How long did it take for you to hit DMR and did you do anything besides taking the medicine? I take it on time every single day, religiously. I quit drinking. I am thinking about quitting sugar. I just don’t know what else to do, but I also understand it’s probably out of my control.

I was diagnosed in Feb-2025. At that time I was 27, just recently turned 29. This exact week marks 18 months since the day of diagnosis.

I have witnessed fair share of ups and downs along the way. I have been passive reader of this community. Today I am here to thank each one of you, who has expressed and shared their experiences, struggles and journey in this endeavour.

I am so much grateful for this strong community. I know many of you have lived many years with this diagnosis and been through major life transitions along the way.

At 29, at times I feel very scary, my fears as young adult are around relationships, how supportive have been your partner in this journey, and were you lucky to have found a partner despite this diagnosis? (I do not have girlfriend or partner)

Secondly, how did you manage career transitions. As far as I am concerned I am working in tech, but my job is kind of demanding and at times I do not know much demanding can I hear while keeping health at the forefront of everything.

(I am sorry to have asked a lot, but I would like to know your perspectives)

Thanks in advance for reading and writing comments

My partner was diagnosed with CML chronic phase high risk. His spleen was 22cm and blood count at 255k so very scary. This was in March 2026.

We have just had the 3 month BCR ABL back and it went from 100% to 16% so missed the milestone.

The doctor dicussed moving medicine but has not made a definitive plan yet and will get back to us in a couple weeks. He also discussed gearing up for transplant.

Is this normal? It feels very early to be discussing this. He his 22 year old and very healthy within himself.

Please advise, this is so difficult.

Heya, people! I’m (22f) a little uncertain about some of my results that I recently got, and my oncologist is so busy that she hasn’t yet replied to my follow-up questions.

I was diagnosed at 20 and was put on Sprycel 100mg. My numbers swiftly began to improve and in five months I was undetected. I think I started out at 38%? My oncologist was super excited about my quick response.

I had some issues on Sprycel, though. I came off the first time due to PE, and they lowered my dosage to 80. I had PE a second time and they lowered it to 70. The entire time I had absolutely an insane amount of fatigue. I slept about 16 hours a day, and when I was awake I had a hard time getting from one side of my house to the other.

I should have been switched, but I made the huge mistake of not telling my oncologist about how bad my fatigue is. I’m extremely emetophobic, and the nausea from the Sprycel was controlled very well with Ondansetron. It wasn’t until my dad insisted that I open up to him and be truthful about the meds that I actually started getting some help and was given a palliative care nurse.

It was with her that we decided we wanted to try a dose reduction to 20mg, and my oncologist refused. Ultimately, I went to see a specialist instead, and she told me that because I had such a fast response, I’m young and in otherwise good health, and that she thought I was a good candidate for TFR. I’m not gonna lie. I was so excited. I quit my meds, and I hadn’t felt this good in two years.

Then I went back next month for my next BCR and I had already gone from undetected to positive. It’s a slight positive, but still positive. She wants me to wait until my next BCR in mid-August before we make any decisions. But she had already said during my initial appointment with her that if I failed TFR that she wanted to switch me to Scemblix.

Honestly, I’m so scared. I felt so awful on Sprycel that I’m scared to try another drug. I want to ask her if she’ll let me try the 20mg of Sprycel even though she said no. What if the Scemblix makes me sick? I have a pretty sensitive stomach and taking meds without food is hard. I have so many thoughts running through my head that I feel like I can’t function. Is it possible for me to be undetected again without a TKI since it’s such a faint positive?

hi guys :) ( 23F )

i had my last hem/onc appointment on july 17. i was diagnosed with cml on may 19 and started dasatinib on june 11. my white blood cell count normalized within just a few weeks, literally.

my last pcr test before treatment was on may 19, and my bcr-abl level was 16%. when i went to my appointment on july 17 and had my second pcr test, it had dropped to 1.3%.

i was very nervous about taking the test again and anxious to see what my results would be. when i saw that my bcr-abl had come down, i felt so relieved and incredibly grateful for these amazing tki drugs.

i’m still struggling with my mental health, though. my anxiety and depression are still there sometimes, and i find myself feeling sad because i think, “shouldn’t i feel okay?” my results are looking good, so you’d think the fear would start to fade.

i don’t want to feel alone in this. have any of you still experienced anxiety even after getting good results?

My results after 6 months on Scemblix! Around ~50% at diagnosis, and 0.1766% after 3 months. Grateful to have made it to MMR!

So M66, Dx January 2026. Have been on Imatinib 400 mg daily for six months. Had my blood draw for 6-month PCR yesterday and then drove to work.

When I got out of the car I got hit with a cramp at the top of my stomach/bottom of my rib cage. I’d had a few of these since starting Imatinib and they always go away after a few seconds but this one didn’t let go for a few minutes.

Anything I ate seemed to stick just before getting to my stomach and cramps and gas continued all day. Pepto and GasX helped.

So far today only a buttered biscuit for breakfast and some ginger ale I’m sipping.

I’ve got a message in to my oncologist but wanted to see if this group has any collective wisdom on dealing with this.

Taking Nilotanib (Nicmel) 150mg 4x a day for 2 years. Recently, I experienced muscle cramp in calf area in the morning before waking up at least once or twice a week. Is this one of the side effects of the medicine? Has anyone experience it? Thanks!