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Hello all, I am feeling a bit fearful. My onc is very gentle and would never say anything to scare me, but she spoke to my internist who spoke to me very openly about the conversation.

In short, my PCR tests have not been good. I was on Dasatinib for most of the 9 months since my diagnosis in April 2023. I switched to Asciminib 3 months ago.

My results:

April 2023: 78%
July 2023: 3% (Dasatinib 100mg)
January 2024: 2% (Dasatinib 50mg for 4 months, Asciminib for 2 months).

I will say I was not 100% compliant with the Asciminib for the first 6 weeks I was on it, but have been compliant since then.

Any experience/thoughts are appreciated.


Olivia, you are within striking distance of achieving CCyR, 1.0%. CCyR, complete cytogenetic response, is associated with the greatest survival benefit among patients treated with second line therapy or beyond and remains the optimal cytogenetic goal of therapy.


Thank you, Buzz. That is exactly what I needed to hear.

Adhering to the prescribed regimen is key. Read the literature and listen to the directions of your oncologist. I learned this from experience. After switching to Tasigna after years on Imatinib I did not adhere to the directions. I was taking the highest dose and my numbers were not budging. The reason, I was eating one hour after taking the medication. I should have waited at least two hours. After following the correct dosage my numbers reached CMR. In the beginning it’s difficult, at least for myself, to deal with having to take medication daily. Let alone accepting the fact that I had a serious chronic disease. Since you are at the early stage you have a lot of copies of the Philadelphia chromosome and the numbers need to be diminished significantly to help stabilize the battle and put you on a path to win the the war.
Live up to your name, HealthyHabits, and get with the program and you should be fine.

Love it! Beautifully said. Very helpful, as well. I am supposed to not eat 2 hours prior to and one hour post Asciminib. Didn’t even occur to me this would reduce efficacy. Thank you thank you.

You are lucky they put you on the 3rd generation drug. That is Novartis newest and best supposedly. It exploits the ‘myristate pocket’. After Tasigna wasn’t working my doc tried to get me on that but my insurance company denied it. I was surprised how the eating too early affected performance. Now I make sure I don’t eat 2 hours before or after. I set my phone for all these alarms it’s crazy but it works. Just part of my day… Good luck and enjoy life.

It cannot be stressed enough that being compliant should not be looked at as an option. The good news is that, as others have said, you are very close. Asciminib seems to be working for you. If you have not done a mutation test, I would have that done. You may discover that another TKI will work better for you (thankfully there are options).

Dasatinib did not work for me as I had hoped and Nilotinib helped me get into MMR. Your trend is encouraging. Especially because it has not been a year since diagnosis, and you have shared that you were not 100% compliant. Your next test may surprise you in a positive way. Stay compliant. Browse the forum regarding vitamin supplements (K2, D3, Magnesium, etc.). Stay calm. Hope you trend continues down.

I'm so sorry, did you try to appeal the decision? We went through 3 rounds of review before the insurance would approve the asciminib. Even then, it is quite expensive monthly. But I agree I am very lucky. Sorry you had a similar experience with the insurance :(

Thank you, Colorado Guy, for the encouraging words. I did have a NGS at diagnosis and there was a tier 3 mutation in ASXL1, which is why I opted to skip Imatinib completely. Would be interesting (frightening? helpful?) to see if additional mutations have arisen in such a short time. Crossing all of my fingers and toes that I pull into the neighborhood of 1% when they retest this month.

I must admit when the Nilotinib wasn’t working as well as we hoped, this was July 2022, I was concerned along with my doc. I knew we wouldn’t be approved for the ascinimib and I just told my doc to stick it out a few more months before getting concerned. And then I found out about the ‘not eating’ part when taking a dose. I actually had it backwards as I didn’t eat for 1 hour before taking the drug when it should have been 2. After fixing that, a few months later, I achieved CMR. Needless to say I was happy. So that’s why I responded to you about the dosing because it’s soooo important. And just so you know, sticking to a regular regimen even for me after over 12 years it’s still a challenge. Using my smart phone is so helpful.

I just have to say everyone on this forum has been so incredibly helpful. I have been very strict with myself in the last month or so, taking the drug exactly as prescribed (as you suggested), and my PCR is at 0.075%!!!! They were discussing transplant options with me up until this point so I am incredibly grateful to finally have a good molecular response. Thank you for all the support.

Great news! That’s a high few people in this world experience seeing their numbers drop like a rock. Maybe you have, but in case you haven’t, you may want to look into whether there is a patient assistance program for Asciminib. They’re making so much bank on that drug Novartis can afford it…. Let us know when u hit CMR.

That is great news! I would however add that I don't think a transplant conversation should have even been in the discussion yet based on the numbers you mentioned. There could be other information we did not get, but based on the PCR alone, I would say that was premature. There are 6 or 7 TKI's, clinical trials, ABL001, etc. Transplant is a last resort when all others are exhausted, you entered blast crisis, or your numbers are running away quickly.