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Asciminib?

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Has anyone tried asciminib? Tell me about your experience with it?

I started on 100mg dasatinib May 2023, switched temporarily to bosutinib a few weeks later because of joint pain, experienced terrible nausea on bosutinib and switched right back to dasatinib. Was on 100mg until mid-June 2023 when my doctor reduced my dose to 50mg dasatinib. Then my PCR came back the first week of July at 17% BCR-ABL1 so we are trying asciminib now. I also have a mutation in ASXL1.

Can anyone relate to this?

Thank you,
Olivia

Olivia, what was the primary reason that your doctor switched you to asciminib?

Thanks for any information,
Buzz

Hi Buzz, my PCR at 66 days was 17%, and she felt that I was not responding enough to the dasatinib to warrant continuing it. Thoughts?

Thanks for your support!
Olivia

Olivia, according to your posts, if I am reading them correctly, you started on Dasatinib 100mg on 05/14. At the end of June, you had been on a TKI less than seven weeks (48 days). You tested in the first week of July so you had been on a TKI just over seven weeks and were already down to 17% (from 83%). I don't understand how your doctor concluded that you were not responding quickly enough on Dasatinib when an optimal response is BCR-ABL1 ≤10% at 3 months (91 days) of TKI therapy..

Buzz

That's correct - a good question, I will definitely ask!

I’ve been on it about a year now and I’m doing great! I also took sprycel initially but hit a plateau. We tried to break though that plateau with bosutinib which kept me in the same plateau but with nausea and my hair falling out. We decided to try the asciminib and I feel so much better and my numbers are the lowest they have ever been. My doctor (I believe) was one of the front line people that helped develop asciminib and when I met with him last, he mentioned asciminib is being studied in front line settings because of its excellent safety profile. I think I was diagnosed in May 2018 and my PCR is currently a .02 as of June. Fingers crossed for my next test to be another drop in numbers in late August!

If you have any questions please reach out to me and I will do my best to share any info I have with you!

Best of luck!!!

Olivia, being that you started a TKI (Dasatinib 100mg) on 05/14, your three month PCR should be done on, or about, 08/14.

Buzz

Thank you both for your help :)

I am delighted to share with everyone that my PCR dropped from 17% at 2 months to 3% at 3 months!!! Dasatinib sucks, I won't sugarcoat it. But I am so grateful to be responding.

Olivia, that's wonderful news and I'm going to have a glass of champagne for you here in South Africa!

I was at 2.7% after 3 months so similar to you, but I wasn't tested at 2 months. It's excellent that you hit that milestone of under 10%.

There's just one point I want to make regarding your treatment and the advice from your doctor - you have been on both dasatininb and bosutinib and your doctor suggested yet another change after barely two months of therapy. In my view this is premature.

From my experience I would say - give dasatinib a chance! It takes some time to adjust and accommodate to everything, and I would say that I only really felt better after around 6 months on dasatinib. At the beginning there is so much going on in your body, and I think it's wise to keep some TKIs "in reserve" for later on in case you need to change. I had to change twice due to late, intolerable side effects appearing, once after 3 years on dasatinib and once after 5 years on imatinib.

Of course I'm not a doctor and this is only my two cents' worth! But I wish you all the best for a further drop at your next test.

Best wishes

Martin

Hello

I hope this finds you well.

I've just be put on Asciminib from today after being on Dasatinib 100 mg daily for 2 years. I developed a moderate pleural effusion in right lung. I've been off Dasatinib for 19 days trying for it to reduce.

I had a meeting with my CNS yesterday and went through possible side effects. This absolutely terrified me. I have had 2 horrendous years of side effects with Dasatinib. I worry this new one will be worse. The side effects she described made me feel so scared.

Please any advise or information about your experience with this would be greatly appreciated.

Take care

Deni.

Hi Deni,
I'm a member of the asciminib group on Facebook. When I compare the amount of side effect complaints compared to other TKIs, it seems much lower with ASC.

Many people have switched due to side effects on other drugs and say they feel so much better on ASC.

This is just my observation, but my oncologist says ASC is tolerated much better than other drugs.

Also preferred over ponatinib which has many cardiovascular sides.

Also - again my own opinion, dasatinib gets the most complaints. I hope ASC improves your quality of life should you take it!

Hi Deni,

I am about 2-3 months on asciminib, and it is infinitely better for me in terms of side effects than dasatinib. I hope you will likewise find a much greater quality of life on this drug. My only side effects are mild nausea, which I control fairly well on zofran, and muscle/bone pain in my legs, which is not bad on most days and on worse days is manageable with acetaminophen and rest.

Wishing you well.

Olivia

I have a selfish specific question: Did you have the "frog eyes" of imatinib (and dasatinib, alas, I've found)? And if so, did this change on asciminib?