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Can’t get back to undetectable…

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Hi friends
Tanya from Australia here. If Scuba is still here I would appreciate his response. I was undectable went TFR only remained off drugs for 3 months back on 20mg Sprycel. I’m unable get back to undectable. My last bloods were rising. It’s been over a year. Is there anything I can do to try get back to undetectable? I actually regret trying TFR. Much thanks for hearing me and appreciate any insights.

Hello Tanya,

Sorry to hear that your TFR only lasted. 3 months. I have just started TFR. Scuba, amongst others reckon that if going back to a TKI after a TFR session, it very often works better if you try a different TKI.

May be worth a try!

All the best,

David

Hi again, I am taking the liberty of reproducing a recent post from Scuba ref losing. TFR…

“ If for any reason you lose TFR, consider switching to a different TKI (e.g. dasatinib low dose 20mg or Nilotinib low dose).

Switching TKIs After TFR Failure
Limited studies have specifically tested whether switching to a different TKI (e.g., from imatinib → dasatinib or nilotinib) after a failed TFR attempt leads to deeper or more sustained responses.

Case series and small studies suggest that:

Patients who switch to a second-generation TKI (dasatinib, nilotinib, bosutinib) can achieve deeper molecular responses than what was reached on imatinib.

Achieving MR4 or MR4.5 for a longer duration (>2–3 years) is strongly associated with improved success in subsequent TFR attempts.

Example: ENESTop trial showed that patients who switched from imatinib to nilotinib could deepen responses and later achieve successful TFR.

So be prepared ahead of time as you navigate this new uncharted territory! Hopefully you will not need to restart.”

David

Thanks for that David. I am not willing try another drug unless I have to but I thank you for the response and advice. Why would I not just raise current dosage of Dasatanib?
Thanks again

Hi Tanya, how long have been back on sprycel? I failed TFR from imatinib after following the Destiny half dose protocol, and being off meds for 17 months. It took about 5-6 months on full dose to get back to undetectable, and I'm now undetectable on half dose.

Thanks for response,glad ur back to undetectable! Back on Sprycel a couple years only 20 mgs,maybe need up dose? Don’t want change meds . Just hope bloods improve:) Will you attempt TFR again A?

Hi

Not tempted to have another TFR attempt. Imatinib at 200 mg/day causes me insignificant side effects. All is stable and having recently retired I have some travel plans where the insurers don't need to be asking awkward questions about meds. So will stay at 200mg for the foreseeable. While you may not be undetectable if you're still below BCR ABL 0.1% doyou need to have another TFR attempt? Have a look at this (now rather old) video which may be of interest. https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-... Hope that is useful. Alastair

PS If I had my time over again I would have tried a different TKI after my TFR attempt failed.

Glad you’re undetectable and that you’ve retired and hope you travel well:). Yes the other response said to change to a different TKI if TFR failed. I did not know of that but not prepared (yet) to change drugs. Will not be attempting TFR ever again! Just hope stay low dose Sprycel for as long as possible. I used be on Iminatab at your dose Alistair, it’s not easy to tolerate the side effects but if it’s working for you,that’s great! Thank you for yr help and hope all goes well in yr retirement and travels!

Hello Alastair,

I have recently started a TRF attempt, after 2 years on half dose imatinib.

Slightly off subject here, but I note with interest your comments re travel insurance! What does one tell the insurers when on TFR on indeed on have dose of a TKI?

David

Just got my blood results back after TFR beginning June 11. Did not succeed. It came back .494. My hematologist said the protocol is to go back on if it’s above .1. I was taking 50mg dasatinib and have restarted that. I was a little surprised it went up so fast, but not too surprised that it did not work since most attempts do not succeed. The only real difference I noticed during this TFR period was that my hair was falling out less.

I’m not sorry I tried, and of course hope that I get back to undetectable soon! Good luck to others trying TFR. And to all of us!

So sorry to hear that your TFR attempt has come to an end.

I am sure you will get back to undetectable soon.

Best wishes.

for Tanya,
first time responder. 2&1/2 years with cml, a healthy otherwise old man.
please excuse my 1 finger typing. and there is no need to reply. but I noticed you are not the replied to person on your own post/thread.
I have been on 3 tki's. failed the 1st for lack of response, started on non-generic sprycel, very good response,became allergic to 50 to 40mg to 20 mg dasatinib {I believed I became allergic to the generic filler} took the sprycel/generic over 1 year with with a bcr/abl going from 22 to 0.03. took 5 weeks off meds to decide what next, bcr/abl went to 0.3, a log rise.
for 3rd med,started on 3rd generation scemblix/asciminib minimal dose 40 mg and 3 month PCR down to 0.007,MR 4.2
I take a 4 or 5 senolytic supplements that mimic dasatinib. and my doc was kind enough to allow me to try all 3 meds on lower than suggested doses,so as to not have side effects, live my life,do my chores. I have looked up my supplements under topic Supplements That Mimic Dasatinib. I take mega curcumin, 4 or 5 others at suggested or lower doses.
again,no reply needed.

Thank you for yr response and glad things are going ok for you now. It’s a challenge living with CML however am grateful for the drugs available to help us.