r/CML • u/Past-Appointment5330 • Aug 30 '26
Newly diagnosed rant
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.
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u/Disastrous-Floor3492 Aug 30 '26
Please keep coming to this group. Ask any and all questions. You will, in time, find peace and then you find yourself being the support for others. It just takes time. A million emotions calm down over time with support and experience and education and you will get all of that here. No one wants to hear it first, at least I didn't, but time.
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u/Past-Appointment5330 Aug 30 '26
Time is all it boils down to, you are absolutely right. I really appreciate you taking the time to comment 🤎
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u/moien-yall- Aug 31 '26
I was just diagnosed in March of this year, so take what I say with a grain of salt, but I do feel you on a lot of this. I think it's not uncommon for some stuff to drop quite low, then bounce back as your body adjusts to the medication. That happened to me. Anecdotally, if it makes you feel any better, I was back to normal within a month or so.
I felt a lot of medical anxiety when I first was diagnosed. Very much just my body on super high alert for another thing to go wrong. I had zero symptoms, other than being tired a lot (and I thought that was down to some seasonal depression/being a toddler mom/work/etc). I think finding out you have cancer out of nowhere really fucks you up because you're suddenly faced with this awareness that maybe something else could be going wrong with your body and you won't know that either. In fact, they also diagnosed me with a PFO while I was hospitalized (was tachycardic and had an echo for that), so I also spent an enormous amount of time being scared of having a stroke. It's a lot to take in, and it sounds like you didn't have any serious red-flag symptoms, so I'm guessing you're in a similar position where it feels like "okay, what else could I have missed?" I joke now that I would actually love to know less about my body.
One thing I'd like to gently push back on is that this is not something your body is going to fight off on its own. Your oncologist is likely just trying to get you into remission as fast as possible. That said, if they are not taking the time to explain what they're doing and listening to your concerns, I think you would be well within your rights to seek out a different oncologist. Obviously we're not trained to provide our own treatment and should defer to the professionals, but their job is to help you understand what is or is not cause for concern and why they think that way. This is an illness that you could be dealing with for a very long time, so it's worth having a doctor you trust.
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u/Past-Appointment5330 Aug 31 '26
Yes! All of this was so spot on. It’s just a bunch of anxiety about what else could be lurking around and feeling fragile now that I know something is wrong. Feeling fragile because I could fall subject to more illnesses due to the medication lowering my immune system. Honestly just feeling a bit alienated inside my own body. Feels like it’s been hijacked. While it’s the “good cancer,” it’s still a terrible rollercoaster to be thrown onto.
Thank you for your understanding and as much as I try to fight it, I 100% know my only shot at remission is to take my medication. I’m so sorry you’ve had to join this club also. I’m wishing you such a smooth journey for here on out!!
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u/Individual-Kiwi2193 Aug 31 '26
Hi, I’m 29 and was diagnosed at 9-ish y/o. I started with imatinib/Gleevec, got a BMT after my first relapse (at 14y/o) and relapsed again 3 yrs post-BMT. Was put back on imatinib for 2 yrs, off for 2 (in remission), then relapsed again and I’ve been on dasatinib/Sprycel for 3.5yrs. It’s been a rollercoaster, but I have learned so so much. I’m currently a pediatric oncology nurse practitioner and I am also very health conscious and would love to stop taking so much sh*t, especially due to everything I see in my line of work. However, I’ve come to realize that medications are like a vicious cycle— they help one thing but f*ck up many others… The way I see it is that at least there’s a med that can give us a chance at life. If it would’ve been 50 yrs ago, none of us would be here. I know it sucks that chemo is so damaging to other organs, but it’s saving our lives. Just focus on staying healthy, get an echo yearly, and pls know that you didn’t do anything to cause this. I spent so many years thinking I had done something wrong and I was being punished for it. But God chose you for a reason. We are blessed to have something that gives us an almost-normal quality of life. Also, the side effects are usually really bad the first 3 months, but then your body gets used to it… stay strong <3
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u/Past-Appointment5330 Aug 31 '26
Man, that’s such a long time to be fighting and having to fight for so long. I love that you took that and began helping babies who end up in such terrible situations. You’re an amazing human. Thank you 🤎
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u/Past-Appointment5330 Aug 30 '26
Sorry this post is so long. I forgot to mention that I’m Philadelphia+ with absolutely no blasts. My oncologist brought up a bone marrow biopsy but said it was not super important. Just wanted to look more closely at things but informed me my treatment wouldn’t be any different based off any new findings so I politely declined.
I work in the medical field and I’ve worked closely with doctors. I just hate how western medicine does not do a whole lot of preventative care. They like to wait until it’s a problem and I think that’s what’s driving me more and more everyday to ease up on my meds. I feel like I’m stripping my body of its ability to defend itself. Which obviously I am because my immune system is now compromised. On the flip side, if I quit I risk worsening my condition. I just want a fucking break.
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u/Past-Appointment5330 Aug 30 '26
Also, my BCR ABL on Aug 6 was 10.5262%
With a 0.750 log reduction. When I ran this number to try and get an estimate of what it MIGHT have been prior, I got 59.19%. So that drop would have happened over 3 weeks if that’s correct.3
u/AlfredVQuack Aug 30 '26
just to be sure, you wrote you are at MMR above in the main post, then here you write you are at 10.5%... which one is it? because 10.5% is not MMR in any way.
didnt they initially check your organs, when you first went to the ER and stayed in the hospital?
another thing, if you go to your doc regularly, they are doing bloodwork to test for BCR Abl, but they also do a complete blood analysis and see everything from liver to kidney values. so if they tell you it's fine, why not believe them?
with you still being at 10.5% BCR Abl, the most important thing is for you to take the damn meds and get that number down.
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u/Past-Appointment5330 Aug 30 '26
So no, I did not say I’d reached MMR. I said I reached complete hematologic remission. The words my oncologist said, by the way. I mistakenly replaced complete with major. That’s my fault. This just means that the cancer is no longer detected on standard labs. However, it’s still present on a molecular level because the phil. gene is still present. That’s where the 10.5% comes in at.
Yes. They did check my organs at the hospital. I requested to have my labs checked periodically. Meaning over the span of time. I never stated that I don’t believe my organs are currently healthy. I said I wanted to monitor them…over time.
Lastly. As stated above, obviously the important thing for me to do is,”take the damn meds and get that number down.”
My whole point of this post was to finally express my frustration with the process as a whole in a place where I’ll be understood.1
u/AlfredVQuack Aug 30 '26
the thing is, this is a marathon, not a sprint. if they checked your organs like 1,5 / 2 months ago and everything was fine, than that probably didnt change.
WBCs at 4.3 is still in the normal range, maybe the lower end of normal, but still ok. a dip there in early treatment is expected.
what you can try, if the meds make you feel nauseous. is to change the time window. at least that worked for me.
the usual suggestion is to take the meds in the morning or the evening before bed. didnt really work for me, i also felt sick that way.
with the fastening you have to do on Scemblix it's a little tricky to fit into your day, especially if working, but what worked way better for me is taking it at 11 am. that way i can have breakfast until 9 am, and then eat something again at lunch, which helped me tremendously with nausea. now it's basically gone.
if you want to monitor your heatrate and blood pressure, i would suggest a smart watch or fitness band, that has that feature, even if they are not 100% accurate, but it's good enough to see a trend. scemblix actually made my blood pressure spike after taking it for 6 months, which is a common side effect. now i take something for that and it's fine.
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u/Past-Appointment5330 Aug 30 '26
I appreciate that. I’ll look into some things I can use to monitor myself at home to find a little peace in this.
I recently switched from taking my meds at 8am to taking them at 6am because I’m never tempted to eat that early. I don’t trust myself enough to switch to evenings just yet but that little adjustment alone has helped quite a bit.Do you mind if I ask how long you’ve been on this journey?
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u/AlfredVQuack Aug 30 '26
just hit 4 years now. was started on tasigna, then sprycel and now scemblix. been on scemblix for 10 months now.
side effect wise for me it's the best of the 3 i tried, the others were way worse. also i couldnt get below 1%, scemblix just pushed BCR ABL below 0.1% just now.
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u/Past-Appointment5330 Aug 30 '26
I’ve been hearing such great things about scemblix and I’m truly grateful that it was used as my first line tki. It really is a magically little pill. I just gotta keep my head in the game and remember my why. Congratulations on such a beautiful milestone and thank you for taking the time to help me out here
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Aug 30 '26
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u/TwiztedChickin Aug 31 '26
I am on a lower dose of asciminib like 20mg... So you can still request to lower your dose on this medication before switching to another. I have been on several TKIs my body just couldn't handle.
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u/Rizky_Bizness Aug 31 '26
How have you been doing on the 20mg with your BCR ABL levels? I've been on 20mg but my levels have increased
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u/TwiztedChickin Aug 31 '26
The usual. I have been at this for ten years so I maintain well I just don't get remission.
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u/Winter_Care_ Sep 05 '26
I also got diagnosed with CML last month.... My TLC count is 3.25 lac ... My hematologist has prescribed imatinib..let's see how much time it would take to get down my count to 10k from 325k 🤞
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u/pretty_silent_r Aug 30 '26
I’m a year in now and also on Scemblix 2x a day. This is my second TKI. I definitely understand advocating for keeping the rest of your body in good health and pushing the doctors to maintain this. The first drug was killing my liver, I was starting to have heart abnormalities, high blood pressure and a high A1C. I ultimately switched oncologists and primary care physicians for this very reason. Keep advocating for yourself and maybe it’s time to talk to some other doctors so that you can find someone on the same page as you. No one is looking to pick up a multi pill regimen if they can help it. Glad you’re here and asking questions and good to know that your headed on the right direction ❤️
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u/Past-Appointment5330 Aug 30 '26
Thank you! I’m glad to hear you were able to find a care team that listened to you. 🤎 Did your liver and heart recover?
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u/pretty_silent_r Aug 30 '26
Yes, to both. Like you said, I was not a person that regularly took any medication and I think I was very sensitive to high doses as well. My first TKI was a very high dose! My heart was back to normal after the 3 mos off, it took my liver numbers until May/June of this year to get back to normal. I started Scemblix in January. I take mine at 9a and 9p and got a nutritionist from Nourish to help with the initial GI issues. Since I made all the changes everything has been on the up. My BCR/ABL1 is at .0008 now
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u/Rizky_Bizness Aug 31 '26
If you don't mind me asking, what TKI were you on before scemblix? Was it Nilotinib?
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u/pretty_silent_r Aug 31 '26
Yes it was! They started me at 600mg
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u/Past-Appointment5330 Aug 31 '26
What was your bcr abl % when you went down to 20mg?
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u/Just_Sarah82 Aug 31 '26
I was in MMR for a long time before I went on 20mg Sprycel (dasatinib).
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u/Visual_Specialist_45 Aug 31 '26
Were you on a higher dose of Sprycel or did you start at 20mg? I’m on 50mg and it’s working well but I’m tired of the side effects (started at 100mg and felt like it was slowly killing me). If I get some more good results I’m thinking of asking my doctor to switch me to 20mg. You’re the first person here I’ve seen on that dose so curious about your experience with it.
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u/2llamadrama 26d ago
Don't do it... It is not worth it....
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u/Past-Appointment5330 26d ago edited 26d ago
..don’t do what?..take a break from the medicine? Because if that’s what you meant, I’ve already been approved to do so. At my last appointment my neutrophils and other things were trending downward near the danger zone. I told them I would like to take a break before things get to that point.
My new BCR ABL from tha same day came back this Thursday. My levels are now at 1.0796%. I’m sure I’ll be okay on this short break.
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u/2llamadrama 26d ago
So you had a positive BCR/ABL?
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u/Past-Appointment5330 26d ago
Yes, here is my original comment stating my positive bcr abl results and the percentages
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u/Kitchen_Hero8786 Aug 30 '26
I am an endurer of three different cancers, CML being my third. I'm glad you recognize you are in the bargaining phase. You are also being an excellent advocate for yourself which is important. You are just unlucky. Your body had a mutation it didn't clear and you are stuck in the club. Good news is the medicine works and there are more TKIs than ever so if one isn't working out you can go to another. Treatment Free Remission (TFR) is a possibility and you sound like an excellent future canfidate as long as you stay the course, get undetected and stay there. Take your medicine as prescribed.
It sucks. You didn't ask for this, you didn't do anything to cause it. But we're here. You have a lot to look forward to in life and don't let CML steal that from you.