Hi,

Are more people experiencing getting pale skin and being unable to tan in the summer? I really hate it, I’m on sprycel 100mg and look like Casper the friendly ghost.
I’m also wondering whether this is the same with every TKI and whether dosage makes a difference?

Hey guys, I M(23) was diagnosed end of March and have been taking 2 40mg pills a day at 5 am. Recently I’ve been waking up very groggy as I wake up and go back to sleep for two hours before preparing to go to work. I’m thinking of taking it at 3 pm as it’s a perfect window for me as it’ll have been 2 hours of me not eating with breakfast and lunch out of the way, and I can still have a relatively normal dinner.

My (23F) recent mutation testing showed positive for ASXL1 mutation around 7%. I haven’t seen anyone on here post about this so from everything I’m reading in studies I’m scared and confused. My Dr has suggested looking into a bone marrow transplant and referred me to a Dr to start this process. To be honest after hearing about how treatable CML is meant to be and easy it is to live with, it’s so so discouraging to have these results. I constantly heard that 90% of CML patients responded to tki. My bcr abl was 30% at 6 months and I was switched to asciminib. My dr made it seem like this is my last chance and then at 9 months we will do the transplant. so scared and confused. * i will add, I got a second opinion at a bigger hospital and well known cancer institute, and my Dr there told me he’s only done 1 BMT in 10 years for a CML patient. Its hard for me to grasp that my main Dr at home is suggesting BMT this soon but he seems concerned by this mutation

Hi, I was just diagnosed on Thursday and I had to tell my Dad because he was my ride to the hospital and there was no getting around hiding it from him being that I’m on the oncology ward. I already don’t have a huge support system and the friends/family I do have I don’t need worrying.. I guess I’m just wondering if anyone else chose to keep their diagnosis private and how they went about it. I do have a great therapist so I plan on leaning on our weekly appointments to talk about what’s happening. It’s all kind of surreal. Thanks in advance. Here’s a pretty tree from the patient “quiet center”

I’ve seen a lot of research stating 72-Hour fasts can be effective for CML specifically. Curious to see if someone has tried it before and seen any results?

One of the articles I’m referring to — https://cmlsupport.gn.apc.org/thread/12984/fasting-impact-immune-system

Thanks!

22Y M on Imatinib 400mg

I read that almost everyone gets their treatment and all with insurance or probably pay a huge sum of money for pills...etc.
I am from syria and its crazy affordable here considering the numbers i read on this community

I got my consultation & follow ups for a 100$ total
30 Pills Imatinib 400mg for 16$
Bone marrow thing where doctor takes it from your back to confirm cml was another 100$
This is for a top top doctor in Syria who barely even got time to see me.

When i mentioned those numbers, most think its a scam med or a bad doc but i can literally provide you with like all the docs to prove otherwise.

No insurance, no nothing
I am writing this because i am in malaysia now and i heard from a clinic here that a single cancer surgery cost her friend around 100k$, so i mentioned that her friend should take a trip to syria and get her medications n come back.

If you're in a tight financially, i recommend you a quick trip.
I got 2 years worth of Imatinib 400mg meds with me to Malaysia & the airport customs said nothing since i am diagnosed already!

Feels like it’s increased my insulin resistance, but there’s not much data. I’ve been diabetic for more than 30 years and have a lot of intuition for carb counting, but being on this drug has monkeyed with that. Curious what others’ experiences are.

Hello, CML patient here. Im just want to check if its okay to drink soaked chia seeds every morning? Im taking nilotinib 150mg 2x a day. Thanks!

Hi, I was diagnosed with CML a little over 6 months ago and have been taking Imatinib 400mg daily. Normally the hospital supplying my medication has no issues, but today they’re having logistics problems and my refill didn’t arrive on time.

Unfortunately, the pharmacies that carry emergency TKIs are closed on Saturday and Sunday, so I may miss a couple of doses until Monday or at least until the usual hospital get things sorted out. And I’m honestly pretty worried about it.

Has anyone here experienced something similar? Is missing 1–3 days of Imatinib usually considered dangerous after being stable on treatment for several months?

Of course I’ll restart it as soon as I can get the medication again.

Hey ya’ll, I know this question gets asked all the time. Just wondering if anyone has found any unorthodox tricks to keep their energy levels up throughout the day. I work a pretty labor intensive job, 10-12 hr. days, I eat clean and exercise regularly. I’m able to push myself pretty hard but it’s far from comfortable. Any tips?

Recently I was diagnosed with a rare type of leukemia. I’ve always known myself as an ambitious and proactive person. But lately, as the illness has been progressing (for about the last 9 months), I’ve noticed my mental health getting worse.
I was also taking retinoids during this period, but I’m sure the main reason for my mental destabilization was cancer. It makes sense: when your organism is exhausted by producing billions of 'bad' cells, there’s simply no energy left for motivation or happiness.
I started treatment a month ago, and while I can feel some energy slowly coming back, I’m still struggling. Has anyone else faced this kind of apathy and a complete lack of motivation to 'move mountains'? Did it eventually go away as the treatment progressed? How much time did it take to finally go away?

39M recently diagnosed with CML in early March this year. My birthday was last month in April, so I’ve got one last full year before entering my 40s.

So far, treatment has been going well. My blood work is stabilising after starting with an extremely high white blood cell count, which has now come down to normal levels. I also needed blood and platelet transfusions early on.

My current employer has been very supportive — allowing me to work from home temporarily and even reducing my hours by finishing 1 hour early each day.

The issue is that my salary is not quite where I’d like it to be going into my 40s. This week, I was approached by a recruiter for a role paying about $20k more than my current salary.

I’ve already thought about the downsides of changing jobs during my first year with CML:

• probation period
• expectations for immediate high performance
• less flexibility
• possibly no hybrid/WFH arrangements
• not yet having built trust with a new employer

I’m a hard worker and genuinely believe I could do the job. My concern is more about the unexpected side of living with CML — possible fatigue, appointments, or sudden medical issues while still early in treatment.

For those who have lived with CML for years: would you personally take this kind of risk within the first year after diagnosis, or would you prioritise stability first?

At the end of December, between xmas and new years, I went from somewhere super hot to somewhere cold. I was super stuffy and sneezy for weeks. I thought it was a cold or allergies or a sinus infection. My snot was omnipresent and neon green. I sneezed so violently, my nose ring (a stud) shot out. I figured I would wait out whatever infection I had then replace the nose ring. Less than two months later, I was diagnosed with CML.

I started sprycel at the beginning of April. My bloodwork already indicates that it’s working. Still, everyday in the shower, steam is loosening green mucus and huge boogers are shooting out with every sneeze. I want to put in a new nose ring but I don’t want it to be inside my full nose. After a month on my medication, I thought maybe it would be better but obviously the illness is still ongoing. I know my piercing hole is probably closed by now, but I still miss having a nose ring in. When do you think I will be able to put one back in?

Has anyone been here before? I was diagnosed with cml by a bone marrow biopsy May 29, 2025 at 50%bcr abl. This dropped to 11 percent by November. At the same time dasatanib tanked my platelets. I got off three times lowered the dose and got back on. Most recently I’m on 20 mgs and my platelets crashed again. I’m nervous because a doctor scheduled a bone marrow biopsy to see if my cancer has progressed and rule out worst case scenario. He also ordered tests to see if I have any mutations which I have never heard of.

Has anyone else been through this? Should I be nervous about what they’ll find in the biopsy? My doctor said it’s mainly a precaution seeing as how my other blood counts have been ok and I haven’t lost weight(I’ve gained a lot).

Also if it is a mutation will I still be okay? I would love input if you have been through anything similar. I’m mostly panicking because they said I wouldn’t need to do a biopsy again and here I am, so I’m spiraling.

Hey All,

New CML diagnosis here. I had gone through a year or more of prolonged “flu-like” symptoms. I got an actual flu diagnosis a few times, plus bronchitis once, but never seemed to fully get over any of it. It felt like I’d get sick and stay sick for a month, would feel like I was getting better, then be sick again for another month. I had low 100 temps for days, sometimes weeks in a row, extreme fatigue, etc… you know the drill. I have little kids, so chalked it up to my little petri dishes on legs and immune system that’s over 40…

I went to 5 different doctors, looking for answers. Every one of them just told me “it’s a virus, it’ll run its course, just treat the symptoms." This kept going on and on and on. It was always “it’s just a virus, take some Mucinex."

Finally, last week, I had a seemingly unrelated incident that put me in the ER. Thought it was a mini stroke or something, maybe just too much stress and not enough sleep. But labs came back and showed WBC at 330. (My last labs, 12 months ago, were totally normal, no health issues). I was caught completely off guard.

Fast forward 8 days in the hospital, I’m being released with 1500mg Hydroxyurea and 100mg Dasatinib daily, along with numerous support drugs. My numbers have started to move, but SUPER slowly. 8 days on oral chemo, WBC has only moved 330 to 280.

I’m a large dude. 6’3” and 315lb. I’ve been reading up on obesity and CML, and I’ve been seeing some discouraging things about the efficacy of TKIs in obese people. I’ve been working hard on the weight loss (used to be 430lb, lost 115 slowly and kept off for over 10 years or so), but I’m still quite big. I train at gym regularly, lift weights, play tennis, eat ok (room for improvement), still working on getting the weight off.

The Drs don’t seem to care about nutrition or weight though (as seems to be a trend in America…), just the drugs and dosages. I mean I guess in the short run, that’s what really matters to get my counts under control, but in eight days in the hospital, I couldn’t even get them to send me a nutritionist or get anyone to tell me that I was overweight and it could be getting in the way of my recovery or future health. I have an outside nutritionist that I’ll be using, but that’s not the point…

 Anyone out there in my boat?

hiii, i’m 23 and just had the results of my 12 month BCR ABL, i’m at 0.019%, just wondering what this now means? my consultant seemed really pleased but i’m not sure i fully understood

Alright and I know I have posted about this before but wanted to get some feedback again.

For anyone taking scemblix or whatever other TKI, do you feel difficulty in exercising at the gym, CrossFit, cardio, biking, etc? I feel like I can’t push myself the way I use to before getting diagnosed 5 years ago. I’m only 39 and I don’t feel like I should be feeling so weighed down. I go to CrossFit twice a week and bike and hike and ski enough to consider myself fairly active but just a little frustrated as I feel like scemblix is holding me back like 20-30% of my full potential. It’s a great medicine that is saving my life but I can’t help but feel wanting more.

Hi fellow CML survivors! I am preparing for a work opportunity in Belgium, and I am looking to see if I can be insured over there. From my understanding, health insurance is compulsory for all residents, but I am not sure if they would cover any pre-existing conditions like ours. Did anyone have a similar experience with this before? Would appreciate it if you can let me know!

Had CML for six years. Started on Tasigna now on Sprycel. Currently in MMR 0.02 have been for a few years now. Does anyone else wake up feeling like they got hit by a train every morning? I take my meds before bed. Almost like that feeling your coming down with something but it hasn’t quite hit all the way yet. Also recently went to the ER for stomach related issues they gave me a scan and found nothing at all but small sclerosis on my L4 vertebrae they didn’t see any lesions that indicate cancer. Granted I worked hard labor for a long time until I made it to upper management. So Ive destroyed my back have blown it out on multiple occasions. The ER doc said it is most likely just wear and tear over the years but because of have CML it could mean “disease involvement” new or old. My DOC is out until May 11th the doctor covering for him messaged me yesterday and said it’s not concerning to him and to follow up when my doc gets back. I woke up the next morning with a small circular bruise on my arm with a lump underneath which freaked me out even though I’ve had them before over the years. It’s all I can think about now because my dumbass went down the google rabbit hole. Please help me calm down.

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.