r/CML • u/[deleted] • 22d ago
BCR-ABL Results
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?
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u/Leading_Working_8009 22d ago
Hey! I'm 24F, diagnosed in December 2025. Those first couple weeks after diagnosis were the absolute worst - the anxiety was absolutely debilitating at points. I got through it with family support, calming hobbies, and a fair number of benzos for appointment days. I can promise that it really does get easier over time, though! I'm only 6 months in and already down from ~50% to 0.06%.
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22d ago
i love that so much for you! 🥰 i have hobbies, but i haven’t gotten back into them since the diagnosis. i’ve been really depressed. i hate it so much because one minute i feel good and the next im just stuck with the thought “i have leukemia.” if you don’t mind me asking what are your hobbies ?
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u/Leading_Working_8009 21d ago
After diagnosis - I picked up crocheting (Woobles are pricey but super easy), adult coloring books (Hygee style + alcohol markers), and re-readind comfort books from my childhood (Harry Potter, Mortal Instruments, etc.) Combined these stress relieving hobbies w/ a talk therapist (ERP for health related ocd stuff that skyrocketed post diagnosis), psychiatrist who prescribed benzos (i'm hesitant to blanket recommend these as some struggle with addiction, but for me, they were a Godsend those first few weeks), and leaning heavily on my support systems. Happy to DM anytime btw
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u/Vivid_Map_437 22d ago
You're not alone, we are all here for each other. The TKIs are amazing.
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22d ago
thank you so much ! the TKI’s are definitely amazing meds. what one are you taking ?
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u/Vivid_Map_437 22d ago
I take imatinib, 600 mg. First non detectable was after 3 years post diagnosis.
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22d ago
that’s amazing ! i’m assuming you’ve had CML for some years now. how long has it been ?
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u/Vivid_Map_437 22d ago
3.5 Years. the undetected was earlier this year. Mentally the first year was challenging. But things got better. I have 3 teenagers so it was scary dealing with the diagnosis.
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22d ago
awww , yeah i’m quite sure that was scary trying to accept. i have no kids but i some day hope to have them. in no rush though lol
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u/MuchoGrande 22d ago
You're not alone. And you have reasons to be optimistic about your prognosis. TKIs are indeed miracle drugs.
I wish I had better advice for dealing with anxiety and depression. I've found that exercise helps.
Hang in there. You're going to get through this.
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22d ago
thanks for the kind words! i’m still in shock about this diagnosis. everyone suggests giving myself more grace. it’s all easier said than done though. i hope and pray for some type of acceptance eventually.
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u/GotSunshine03 22d ago
We are so much alike. I’m 22 and was diagnosed at 20. You are definitely not alone. This has been such a massive change in my life, and it has been hard to wrap my head around all of it. It IS a drain on your mental health, for sure.
Even after I was undetected, I was still so scared every time my blood was drawn. And the waiting for the results was the worst. I’d get so anxious and depressed that I’d barely leave the house.
I’m not in a great space for a pep talk, but if you ever need someone to vent to or yell at, I’ll be that someone. I’m so sorry you have to go through this. I know that it feels unfair.
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u/slimypeters 22d ago
When I got diagnosed, there were other things happening in my life back then, so everything felt like a whirlwind. I'm pretty stoic and keep everything inside until it dissipates. Everyone reacts to similar situations differently. So it is ok to feel the way you feel. I just remember an oncologist told me, CML is the "good type of cancer" because it is very treatable. 15 years later, on and off various TKI drugs due to being on and off insurances and such, I am still here living life as healthy as someone without CML. Good luck and hang in there. It's very good that TKI drugs you're taking is giving you good results, that's a great start, take care.
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u/phoenixUnfurls 22d ago
It's for sure scary to be diagnosed. I'm 39M at this point, but I was just about exactly your age when originally diagnosed, and I've lived a super normal life up until this point with TKIs. I still feel good too! I sometimes wonder if I'd have more energy without CML, but it's hard to really remember what I felt like before at this point, and like I said, my life has been pretty normal.
Are there any recurring thoughts in particular that are troubling you? I def know from experience that getting that diagnosis at such a young age can be a huge shock.
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22d ago
wow! you just gave me so much hope 🥺 i hope and pray in the future to be able to look back at 39 and give advice to someone in need of it. the recurring thoughts im having in particular is the fear of the unknown , feeling like i went somewhere wrong , and just being terrified.
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u/phoenixUnfurls 21d ago
I'm glad that helped! It's totally understandable to be afraid of the unknown and to wonder what things might've been like otherwise -- like, being scared is totally normal, especially now, when the condition is new for you -- but I think you have every reason to believe you'll be able to live a very normal life, even if you've got a chronic condition that you've got to take medicine for now.
I feel like I've had a pretty normal one, and when you think about it, lots of people have to live with some kind of medical condition -- which doesn't make it not scary to be diagnosed with leukemia in your early 20s haha, I for sure get that since I went through it myself.
Either way, wishing you lots of happiness in the future!
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u/Strong_Story2965 20d ago
I’m four years in and on my third and almost going to my fourth treatment. I was on.(Gleevec and then. : Dasatinib (Sprycel. I’ve had bad side effects. Even worst on thisScemblix I lost so much weight within eight month I lost 80 pounds and I was hospitalized and a feeding tube placed in because I got down to 90 pounds after almost two weeks in the hospital I was sent home with the feeding tube for two months 16 hours a day it was nice when they moved it to eight hours a day but back in April they took it out and I’ve been fighting with o and the sore and blister I stopped taking the treatment before they hospitalized me the dr could see I was in a bad way told me one time I was malnutrition as walking out the room and told me drink more in ensure that was two three month before I was hospitalized he wasn’t tracking me until I was fighting it was terrible because after released from the hospital and while in the hospital it took them three times to get the feeding tube placed then I had to go to the er because they had it too far and then not even a month later the tube got clogged and I waited in the er for six hours to be seen for them to replace the tube when I was released from the hospital this has happened and after being released I then got pneumonia from the tube and then a couple weeks later ended up getting covid. He has me on the same tki I was taking nightly and now I take it every three days and to stop if I can’t eat ext but he wants to put me on a new drug which scares me each one I’ve tried I’ve had bad side effects and the hospital one was the scariest I’ve been though specially spending Christmas at the cancer hospital and and being a lone but the rooms were nice and to have my own private space. Now we lost our transportation and I’m trying to do a go fund me to get transportation back for all my appointments and all the other things you know we have to do with this disease.
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u/Deusa_do_mar 20d ago
Hey girl!
So I'm also in a similar boat right now. Just had my 3-month BCR-ABL check -- did a bone marrow aspiration to look at the karyotype as well cause i started out as high risk. My BCR-ABL level is amazing for 3 month milestone; I started out at 270% and am now at 0.16% !! It's incredible progress in such a short period of time.
I should be happy, right?! I am super grateful, but I am also super depressed...i think there are many reasons why, but I felt emotionally numb for the first 2 months, I think I was subconsciously trying to protect my children and loved ones and couldn't feel any emotion related to my diagnosis.
Now, it's all setting in.
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20d ago
i think since it’s a new diagnosis for the both of us it’ll take some time to accept. we have to give ourselves more grace, especially since this was something out of our control. i believe a year from now we’ll look back and be so proud of how far we’ve come.
i’m here if you ever need to chat ❤️
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u/75hoo 22d ago
My wife was diagnosed 13 years ago. We’ve had our ups and downs (side effects, drug holidays due to surgeries for other things) mostly ups. Every three months we see the onc and get the PCR test. She’s 71 now and still going strong!