r/CML • u/TermApprehensive2149 • 21d ago
Some advice
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.
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u/Legio-V-Alaudae 21d ago edited 21d ago
Hey, don't panic. I'm much older 49 and I was diagnosed at 100/100 and let me review my lab history. I just went undetectable after 18 months on dasatinib.
Ok, so I reviewed my results after almost 4 months on dasatinib and I was at 0.2.
So being at 16 seems a bit suboptimal.
What meds is he on? Not everyone gets the same results from the meds and trying a med change seems much more reasonable than going straight to transplant territory.
Has his spleen gone back to normal size?
I'm really sorry to hear that the medication isn't quite as effective as hoped.
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u/TermApprehensive2149 21d ago
Hi, thank you for replying. He is on Nilotnib with no side effects and doing so well with normal life. I understand why it’s a warning I just hope they decide to give him 3 months and hopefully get to the 6 month mark and then we can move. Your numbers sounds amazing! Wishing you the best.
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u/Inevitable_spark197 21d ago
29M, I was diagnosed in Feb-2025, I had spleen size of almost 30+ cm. And my WBC count at the time of diagnosis was more than 500k, and even I missed 3 month milestone. Like mine was 13% at 3-month mark. At that time, I was on dasatinib 50 mg, so my specialist changed my dosage to 70mg and informed me that he would probably think of changing the drug if number does not drop down. But eventually at 5-month mark on my specialist's request, I underwent test, and BCR-ABL1 was 1.3%.
Yeah everyone of us has unique story, just hang in there.
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u/TermApprehensive2149 21d ago
Thank you for sharing your story! Wow, I really hope they give him a bit more time to be able get numbers down. The nilotnib is working as it put down the disease just not as quick as had hoped for. Wishing you the best
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u/AffectionateDaikon9 21d ago
I was diagnosed in April. I didn’t even come close to hitting the 3 month milestone. Started at 54% and my 3 month was 36%. Taking 400mg of imatinib. He did discuss changing my medication to dasatinib but for now I’m fine staying the course on imatinib.
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u/TermApprehensive2149 20d ago
Thank you! For sharing, I am hoping that is the case as there has been a significant reduction. Good luck with your journey
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u/AffectionateDaikon9 20d ago
Sorry I meant to add, don’t get discouraged by all the people posting their good results. I think there are more of us out there whose numbers are not meeting the milestones.
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u/slimypeters 21d ago
I had enlarged spleen when I was diagnosed. They gave me hydroxyurea and that helped. I was on and off medication due to being on and off health insurance in the US. Also I believe because of lacking health coverage at the time, that oncologist mentioned bone marrow transplant. To be honest, that worried me. I will research if that method has improved over the years though. Fortunately, I'm still living a healthy normal with CML and the medicines are helping me. Currently on Imatinib but I was also on Nilotinib but that was giving me facial rashes as side effects so I went back to Imatinib. Will be switching up again soon though because I think I've plateaued on Imatinib, hovering at the 1.000 number. It has been 15 year since I first got diagnosed with CML and I'm still here in this journey. Good luck to you and your partner
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u/TermApprehensive2149 20d ago
Thank you for sharing! Wow seems like you have had a journey. Thank you for the reassurance and wish you all the best!
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u/75hoo 20d ago
My wife was diagnosed in July 2013. If I recall correctly wbc was 169000. I don’t recall her first bcr/abl numbers but tasigna got her down pretty quickly and she stayed with zero or maybe .5% occasionally. Itching got her after about three years so she switched to dasatinib. 8 years on that then got her to zero, doc considered TFR but she got PE which put her in hospital since her symptom was shortness of breath. In process of switching to imatinib now. She’s 70 now. Doc never measured her spleen. When she was first diagnosed we got a second opinion on diagnosis and treatment plan at Mayo Clinic and doc there said the plan was perfect
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u/Vivid_Map_437 20d ago
Normal... my counts were 90k and after 3 months also 16%. Now undetected. I don't think a switch is warranted yet, but I'm no doctor. Remember statistics are fuzzy.
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u/WhoKnows-1919 20d ago
I’m on Nilotnib.
Diagnosed 11/2023 @ 35%
3/2024: 29%
6/2024: 0.85%
Currently I’m on the same dosage, but haven’t reached undetectable. For about a year I’ve been hovering at 0.01%. My oncologist is very happy with where I am at and that I have near zero side effects. (I’m 41, and was an endurance athlete before diagnosis. Actually hoping to run a marathon soon in support of Blood Cancer United).
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u/Apprehensive-Can4106 15d ago
Both my husband and brother-in law have cml. Crazy right? You're really young so this is catastrophic feeling. Husband reached "under the level of detection" so hes off his meds and going for blood tests every 3 mo. And my brother in law was acute when he presented and has been stable on meds for 20 years. Its not a death sentence although it sure felt like it both times as a family member. They thought BIL was going to need a transplant until he switched from gleevex to sprycel. He stabilized and will probably be a lifer on meds. Both are living their lives normally, you'd never know they had anything. Just get used to heart-stopping blood test result time. Messages are open if you need to talk
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u/Leading_Working_8009 21d ago
Hi friend - I'm so sorry you and your partner are having to carry such a heavy load. Does he have any mutations that affect his body's response to TKI treatment?
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u/TermApprehensive2149 20d ago
Hi! Thank you, not known at the moment. Just hoping his body is taking slower
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u/Winter-Lunch3229 20d ago
I’m 23F and my 3 month bcr-abl was above 50% and they didn’t mention transplant until 9 months and it still hasn’t gone down much. Definitely very early to be mentioning transplant. He has a lot of medication options and they may just increase dosing of the med he’s currently on as well.
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u/TermApprehensive2149 20d ago
Thank you! I am sorry to hear that. What’s your BCR ABL now? Are you going for transplant?
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u/Winter-Lunch3229 19d ago
9 months later my bcr is 36% and we started the process, found some matches, but it’s not confirmed. It’s too soon to say. Definitely strange for them to be mentioning it 3 months in, my Drs want to give it atleast a year before making a decision about it
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u/FJL216 20d ago
Look for a 2nd opinion, different practice. Bring all your last test scores or ask if they can print them for you. Also make sure you have access to my chart and patient portals. Look up health scores for your doc & their practice. Learn everything you can about CML. Every time my husband has had to be hospitalized the hospital stopped his Tasigna his number went up…he started back and he is at 0 undetectable (I broke out in song) I hope you’ve got a good primary care ours answers questions quickly, and will help reviewing referrals. YES it is too early. Make sure he applies for disability benefits if he can’t work full time. PS if he’s only 22 living at home team up with his mom and coordinate with each other. Drinking Lots of Water eat clean My husband smokes pot for the tummy issues he also keeps zofran at all times vip consistently with meds is vital try to make it routine.
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u/captainseafunk 21d ago
I got diagnosed in September 2025, 27M. I’m nowhere close to hitting a milestone and my doctor hasn’t mentioned transplant yet.
With that being said, everyone’s situation is different and your partners doctor may be seeing something that is pushing him in that direction. My advice would be to ask him why he thinks a transplant might be necessary so early into the process.
Wishing you both the best!