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My Situation after Flunking TFR

I was diagnosed by bone marrow biopsy in June 2018 with BCR-ABL @ 12.664%. Started 400 mg Imatinib on July 5, 2018. By June 5, 2019 my BCR-ABL was .0097. It became undetectable on Sept 9, 2019 and remained there. On March 25, 2021 I stopped treatment. I thought it was too soon, but my hematologist said I had a 70% chance of being successful and staying on the TKI for a longer period of time would not change that. So, I consented.

On July 17, 2021, the BCR-ABL became detectable @ .0095. Then 4 weeks later it was .0782. Then 4 weeks later .0645. Then the October 18th draw showed BCR-ABL at .4243. During this period my hematologist left and went to Cleveland. I was reassigned to another. I think I know more about CML than she does. On Nov 3, 2021 she started me again on 400 mg Imatinib. @ months later, January 3, 2022, I was undetectable. Again "too low to quantify" on April 5th. In my telemedicine appt this past Monday, April 25th, she agreed to reduce me to 200 mg Imatinib and check it again on July 5th. 

I really do not want to be on this drug, even at a reduced dosage unless it is needed to keep me alive. I will probably look for a hematologist for whom CML is his/her specialty. I would appreciate any wisdom from those of you on this Forum. This website has been invaluable to me since I first discovered it back in 2018.

Thank you. 

 

Rick, assuming you test undetected in July, continue reducing your Imatinib dosage with each undetected test, first to 100mg and then to 50mg (100mg every other day), then to 33mg, eventually weaning yourself off of Imatinib if you are successful all along the way.  At the very least you will find out how much Imatinib you actually need to take.

Other than that if you switch to another TKI they will likely want you to start on full dosage.

Thanks for sharing your story Rick.

@Scuba, i note with interest that he got put on imatanib again after the TFR fail and was able to get back to undectable. This is happy news for me.

I'm wondering why you (and my hemo) recommend going on a new tki if tfr fails.

Various “stopping” studies suggest that in addition to depth of response, there is a correlation between length of time on treatment (and in MMR) and ability to stay in TFR.  It needs more time.  I don’t know where your haematologist got 70% from but that looks like data from the UK DESTINY study, which showed that patients on the study in MR 4 or better had about a 70% chance of staying in TFR. While that study didn’t show a correlation between length of time on therapy and likelihood of relapse, no one on that study was on treatment for such a short time as you were (entry criteria included on treatment for 3 years or more) so the conclusion they drew about your situation strikes me as not supported by the studies (on the contrary, in fact).

FWIW, I’m in TFR and was on the DESTINY trial.  I’d been undetectable for 4 1/2 years (on 400mg imatinib) when I went on the study, which involved a year at half dose before stopping completely. By the time I did that, I’d had 6 years on imatinib.  I’ve now been off it completely for 7 years, remaining undetectable. 
 

And as for going back on therapy if you fail, I’m pretty sure everyone on DESTINY who had to go back on treatment went back on the drug which they had been on, and which had obviously been working for them! 
 

Richard,

Thank yiu for replying to my post and story. I too questioned my hematologist about the length of time I had been on the medicine and time at "undetectable."  I am wanting to be very proactive in how I go forward and would appreciate any guidance you would be willing to give. In addition to time on Imatinib, dosage reduction, etc., I am also interested in other factors, such as vitamins, supllements or other meds that would make TFR success more likely. If you do not have time to respond to this request, I get it. It is a lot to ask.

Thank you.

Rick

 

Hi Rick

I followed the Destiny Protocol after around 11 years om 400mg imatinib. As with Richard I did a year on 200mg and remained at 0.000%. I then stopped but 17 months later after a slow rise over a couple of months I went over 0.1% BCRABL so back on to 400mg of imatinib.  I regained my zeros in 4 months.

For me the reduction in side effects was more marked in the change from 400mg to 200mg. with my consultant's agreement after 12 months on 400mg I reduced to 200mg again, and have remained at 0.000% for the last 8 months. I don't feel any need to try for TFR again. 

Also echoing Richard I have heard the lead researcher on the Destiny (Prof Clarke) say that all those who lost remission on reduce dose in the trial regained it when they went back to full dose.  

Allistair,

Consider changing drugs (e.g. dasatinib low dose). There is evidence that rotating through TKI's helps induce deep remission which may be durable leading to successful TFR.

Just a thought.

 

This paper is a good summary of the various TFR studies and their outcomes

https://www.haematologica.org/article/view/haematol.2019.242891

Depth and duration of response seem to be factors (newer TKIs only seem to produce higher success numbers because they induce a greater number of deeper responses, not a better TFR success percentage - but choosing TKI for the purpose of getting TFR is not popular among physicians at least in the UK because there are many other factors involved, in particular side effects - so definitely discuss any such thoughts with a specialist). 

As for other influences such as supplements, I am a very firm believer in evidence based medicine.  I am not aware of any studies which investigate the influence of these things on TFR, and it would be a very difficult study to set up and run.  In my own case, I don’t take supplements other than vitamin D in the winter.  My diet is pretty good and I’m very fit, especially for my age (55). I run at least 3 times a week (around 25 miles in total), and cycle anywhere from 50-80 miles per week.  However I didn’t do much of that until I had more or less finished the DESTINY study.  And I like a beer and glass of wine or two.  My own view, which is an opinion only, is that biologically there’s something about me which means TFR works, and my CML translocation was also rare which may have made a difference.  I became undetectable on imatinib very quickly - within 6 months.  If I were you, I would continue on your current TKI as it’s working but give it more time in deep response.  At least 2 years.  Then perhaps try half dose, and then stop.  I lost all my side effects when I went from 400mg to 200mg, and could happily have stayed on that dosage.  If you can’t get to undetectable on imatinib then consider a switch but listen carefully to the advice on the side effects of the newer TKIs.