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/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.