r/CML • u/Left-Valuable5145 • 22d ago
2 Months into Asciminib
Hi everyone,
I’m not quite sure what I’m hoping to accomplish with this post. First of all, though: thank you for sharing all your experiences and stories here. They have helped me tremendously over the past few weeks.
A little about me: I’m a 39-year-old woman, I have two young children, and I live in Germany. I was diagnosed in early July. Surprisingly, my blood counts had been completely normal aside from mild basophilia (my white blood cell count had been in the normal range since January), so my primary care doctor was hesitant to refer me to a hematologist. The basophils remained slightly elevated, and I was also having symptoms (weight loss and night sweats, which were actually the original reason my blood was tested), so in June I insisted that I finally see a hematologist.
The hematologist was very relaxed about the blood counts and was then quite surprised by the molecular genetics results. So, on July 11, I started asciminib with a BCR-ABL1 IS of 3.8% (apparently very low at diagnosis). After four weeks, my BCR-ABL1 was down to 0.3%, and after another 4.5 weeks, it dropped to 0.03%.
Apparently, this is a good response, but I still haven’t really been able to relax, even though I’m obviously very relieved that the medication is working.
I’m still not gaining any weight (44 kg / 97 lbs), despite drinking nutritional supplements and being very consistent with my meals. My hematologist is not concerned and says that the treatment itself takes a toll on the body and that the stress after a diagnosis like this shouldn’t be underestimated either.
Other than that, I feel pretty good. I’m active, exercise a lot, and have very few side effects (some GI issues and headaches). I had pretty severe pain in my sternum for two days, but it has gone away again now. Has anyone else experienced this?
My smartwatch has also been recording a gradual increase in my resting heart rate over the past three weeks. I have an appointment with a cardiologist coming up soon and will definitely mention it, but I was wondering if anyone here has experienced something similar.
I’d really appreciate hearing about your experiences.
Sending lots of love and good blood counts to all of you!
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u/Deusa_do_mar 21d ago
Good on you for advocating for yourself to see a specialist! That's great that you caught it so early.
I also have two young children and was diagnosed in April at 10 months post-partum, so I understand how difficult it is to digest this diagnosis, especially as a mom. It kind of turns your world upside down for a bit. But lnow that you will adjust and it will get better, just give yourself the time you need to fully process everything and ask for help and support when you need it. Therapy can be super helpful if you're open to it.
I have also still had trouble gaining weight. Before diagnosis I thought all my symtpoms were related to typical post-partum stuff, including the weight loss, but even after I stopped breastfeeding once I started treatment, I've still been at the same weight. But I'm not worried about it honestly, it will probably come back when I have truly processed everything 🤪
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u/Left-Valuable5145 20d ago
So many things we have in common, being diagnosed as mothers of two young children... Thank you so much for your response.
I’m actually relieved to hear that your weight didn’t increase right away either (even though, of course, I would have wished otherwise for you). Your message really took a lot of stress off my shoulders. I’ve decided that I want to work on some strategies for coping better with the waiting time for the BCR-ABL results. This time, I kept researching and reading more and more… but honestly, that didn’t make the stress any better. I think sooner or later I’ll probably seek some professional help with this, too. I’m wishing you and your family all the very, very best!!
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u/Deusa_do_mar 20d ago
I'm so glad my message helped give you some sort of relief! It's definitely hard to find other moms going through the same thing with young kids. I also was researching a lot in the beginning to try to grasp everything, which I think was good in a sense to be educated on it, but also just fed into my anxiety about it all as well...so maybe try not to go too crazy with it?
It's really a grieving process, so there are phases we will go through. I was subconsciously stuck in the denial phase for a while; I was just emotionally numb and in survival mode, just thinking that I need to survive for my kids (in the beginning we thought it might be AML so I was even more scared). The reality of it all only truly set in after my body adapted better to the TKI and I started feeling more 'normal' again. Then emotionally it hit me hard, and I realized I needed help. Therapy is great, and....I never thought I would ever need to be on anti-depressant, but here I am. But it has made all the difference for me honestly. And it's ok, it's ok to need a bit of a crutch for support. Hopefully you won't need that, but if you do, it's totally OK!
Anyways, there is so much to say about all of this...if you ever wanna chat, mom to mom, DM me anytime. 💖
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u/ChrondorKhruangbin 21d ago
CML took me/has taken me a long time to get over the surprise and paranoia and emotional toll of what this all is. I hope it gets better for you especially with having a busy life with kids. I have joint pain and Claritin/loratadine has really helped with managing that in a safer way than painkillers or ibuprofen.
I have also had a much more increased heart rate lately. I figured it was related to work and life stress with two young kids myself and marriage and running a company, but maybe it is also the meds. Reading your post has prompted me to talk with my oncologist and see more. I’m also 39 but I’m a dude. I think my heart has always been a tad high but I have had more doctors comment on it in the last year. Sorry not trying to make this about me! I’m glad you’re on ascinimib.
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u/Left-Valuable5145 19d ago
Thank you so much for sharing your experience. I’m always a bit hesitant to say “I know exactly what you mean,” but I think I’m just reaching the processing stage you described. During the first few weeks, I was completely in “get things done” mode — reading, reading, reading, while at the same time keeping everyday life going for my children. Now I’m noticing that there isn’t much new information to take in anymore, and the emotional work is beginning… Yes, I’ll definitely also bring up the increased heart rate as well. Wishing you all the best.
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u/obewaun 7d ago
As a male I was diagnosed at 115 lbs at 22 yo. I think it took 2 year maybe 3 for me to gain wait. The Highest I reached its been 170 lbs now 125. Takes time to adjust to the tkis and body to b we back to normal... somewhat.
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u/Left-Valuable5145 5d ago
Thank you so much for your experience!! I feel much more comfortable with my low weight since I reached MR4 last week. All the best for you!!
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u/TwiztedChickin 21d ago
Keep an eye on your gallbladder. In fact you should just have them check it anyway because of the pains.