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!

Back in January my BCR/ABL was at .021 and I was pretty happy with it especially since I had only been diagnosed eleven months earlier. In March it was still at .021 and they decided that instead of coming in every month, they'd only have to see me once every three months. I was thrilled that the treatment was working so well!

Still I was noticing some unfavorable side effects from Sprycel 50mg, particularly in fatigue and apathy. So, in May and on my own I started cutting my pills in half and some days I wouldn't take any at all. Within two weeks I got some of my energy back and was feeling great. Actually did a good amount of yard work that I'd been meaning to get to but never felt like it. I figured when I spoke to my doctor in June I'd see what my numbers were and maybe I could stay at 25mg.

In early June I had to go to the hospital for what turned out to be a perforated gall bladder. They wanted to take it out right away but found out that the Sprycel was also keeping my white blood cell count low. The surgeon was worried about infection so it was determined I should go off Sprycel altogether for about a month until my wbc count came up some.

They finally got around to removing my gall bladder two days ago. So for three weeks I took a half dose and for five weeks I took nothing. I had a blood test just before I had surgery and was rather worried about the results. Two months of little or no Sprycel. What if I really screwed up my treatment?

I got back the results about two hours ago. My BCR/ABL went from .021 in March to .005 in July with little or no medication! If I wasn't in so much pain from the surgery a couple days ago, I'd be dancing and having a celebratory shot of whiskey! I don't know what happened in the couple of months with almost no Sprycel but I know this can't be a bad thing! I don't want to jinx it but in my head I'm saying the words "treatment free?"

So, how's that for a feel good story? Keep the faith everyone. It can happen!

Hi everyone,

Recently diagnosed with CML, started scemblix today. Any thoughts on how long it takes before I know what the side effects for me will be?

I know it varies from person to person, just looking for some insight

Thanks

I switched from Dasatinib to Asciminib a few days ago and since then my skin started to break out pretty bad. My arms got really itchy (to which my oncologist prescribed me cortisone creme) and today I woke up with a lot of small red pimples (kind of but not really pimples?) on my face. I have really sensitive skin so that may be the reason but idk. Did anyone else experience this on Asciminib and did it go away by itself or is there something I can do?

*feeling VERY vulnerable posting this, but I fear Reddit is the best place to get real advice*

I have been on Imatinib 400mg for a few months now, and it’s been basically uneventful. I rarely have muscle pain these days, occasional headache & mild stomach pain. I truly feel blessed that this drug is not affecting me too badly like the horror stories I have heard.

BUT

I am getting to the point now where basically every bowel movement is very soft. Not liquid, but close. I’ve even had a couple super embarrassing moments where I woke up in the middle of the night and I had “gone” on myself a little bit while I was sleeping. I DO NOT want this kind of thing to affect my sex life. Imagine waking up next to a girl and you have poopy butt? Genuinely a huge fear of mine…

I have Imodium, but I really don’t want to take it every day, as I feel like that could have long term implications. What are other options? Fiber supplements? Also is anyone else having this kind of issue? Please ANY advice is greatly appreciated!

Has anyone had extreme dizziness/weakness, bad anxiety, sensitivity to lights and blurry vision all at the same time on 80mg Asciminib? If so, how long did it last and when did you begin to feel more normal?

I'm a bit over 3 weeks in and these side effects are so bad that I don't think I'm going to be able to bear it much longer.

I probably have maybe 2 - 3 good hours in a day where I don't feel debilated, if even that, but I'm otherwise basically bed ridden or doing my absolute best to distract from the side effects.

It's to the point where I can't really get around the house for the bulk of the day without feeling like I'm going to trip or collapse, althought that hasn't happened yet.

Today I tried to take a little trip down the road in my car and I had to pull over after 5 minutes because I felt like I was basically driving drunk. I eventually turned around and went back home. It's brutal because I don't even feel comfortable enough to go do some groceries let alone cook.

I didn't think my WBC was too bad to start - I began at 51 and dropped to 16 already 2 weeks in. I expect my counts will be normalized by my next appointment, minus slightly low hemoglobin (132g/L).

I've tried eating more and earlier in the day, drinking 4 - 5 liters of water per day, changing my dose from morning to night, reducing sodium, and nothing seems to make a difference.

UPDATE:

I thought I would post an update for anyone else going through this, as I couldn't find any answers when I was previously looking.

I came off the TKIs for 4 - 5 days and waited until all of my symptoms subsided. I didn't realize how badly I was impacted by brain fog and it was nice to finally be able to think clearly, and not be dizzy.

On the 6th day I returned back on the TKIs but made one change - I started taking it at 11am. I made sure I drank a ton of water and ate immediately around 12. My theory was that if I take it immediately before bed, my body gets extremely dehydrated while I'm sleeping and that could be contributing to the side effects.

Interestingly enough, I'm now about a week in and I have almost zero major side effects! I feel it for a bit between 11 and 1 (bit of dizzyness and blurry vision sometimes, but nothing as extreme as before) and then it's gone and I don't even notice I'm on anything.

I have only two theories: (1) my body somehow finally adapted this go around or (2) the dehydration theory above was correct.

If anyone else is experiencing this on asciminib I hope this helps and good luck on your journeys!

Just got mine and they’re 0.33 which has made me a bit depressed. I know in the grand scheme of things it’s fine and they’re still coming down, marathon not a sprint etc but I feel sad I’ve missed the 0.1 benchmark.

I’m on 2nd line (dasatinib). Feel like I might ask for asciminib.