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Tfr and Sprycel. Scuba or anyone?

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Hi everyone
Today I had an appointment with my doc and we discussed about tfr. I told him that I want to give it a try.
He told that all the companies that produce first and second gen tkis have started this protocol(tfr) except the company that produces Sprycel. And he told me if I want to try tfr he can put me on tasigna... I don't want to change tki(and I won't) because I know my respone to sprycel and I have no side effects!
Does anyone know something about that? I am little bit surprised and disappointed....

Treatment free remission 'tests' are not controlled by the drug company. It is set by response and PCR status. Sprycel was included in TFR studies (see link below). Anyone who has achieved "undetected" regardless of TKI for at least two years has a ~50% chance of remaining treatment free. Those who become detected again (fail TFR), quickly attain response after resuming therapy which is why TFR is safe to try. Research at M.D. Anderson and other locations show highest success rates of TFR are achieved when attempted after 3 years of "undetected" status, but only marginally so.

https://onlinelibrary.wiley.com/doi/10.1002/ajh.25342

I take sprycel. I will be attempting TFR later this year.

(get a new doctor)

 

So Scuba do you think if I ll send this link to my doc will help?
He told me that he will look for it and he will tell me eccactly the reason... Maybe he is misinformed because none of his patients had tried tfr... I do not know....
Do you have any other link about this??

Hi

I would suggest watching Prof Richard Clark's paper from the 2019 CMLSG Conference on this link. It is the paper around 2.30 p.m. Not mainly about sprycel but I think there were a few patients on Sprycel on the Destiny trial.  

yes Alastair, I think you are right. Scuba's point is also correct - TFR is not to do with which drug but what your response is. Novartis did make an effort to suggest that nilotinib was the only TKI that could produce a sustained TFR, but all the stopping trials after the initial STIM (Stop Imatinib) study allowed other TKIs... Including the UK's DESTINY trial of course which uniquely required dose de-escalation for 12 months before stopping.

Your doctor needs to take a look at the data from all the trials. Good Luck,

Sandy

Thank all of you for your answers. He told me that he is gonna check it... I will wait to see how my next pcr is and then if every think is good I will try it.!

Dose de-escalation is a very good protocol. In this way, a patient can learn what lower dose works just as effectively as a higher dose and often with less side effects. Suddenly stopping full dose TKI can have withdrawal effects such as headaches, joint pain and other symtoms. Drug de-escalation can help minimize that from happening. It's partly why I only take 20 mg sprycel every other day as I prep for complete cessation.

Scuba - how long have you been taking the alternate day schedule with 20mg, and how long were you on 20mg every day before that?

I’m reluctant to stop completely as after all sorts of life events and issues I find myself in a fairly stable place ... kids now healthy and doing well, my own health pretty good (COVID after effects excepted), etc. ... so don’t want to rock the boat with TFR.

But a further reduction from 20mg down to alternate days might be appealing!

Just over a year - started in January 2020. Had two PCR tests since then and both negative. To be fair - sometime I forget to take sprycel on the 'on' day and go two days without. PCR's still came back negative. My next PCR is in two weeks (every six months) and if I continue to test negative, I may very well stop altogether.

My only concern is having to test once a month to establish whether TFR holds. It's a lot of time to travel, test, and return. My hope is to test for 3 successive months and if negative return to a 3 months schedule and if negative return to my six month protocol I am on now.

(Even if I continue to test negative, I will always have to test every six months for at least 5 years before believing CML is in the past - and yet, will still have to test at least once a year. It's possible it has burned itself out given everything I have done to attack it.)

Scuba, is there a way you could arrange to courier your blood sample to the testing lab. I know the RNA starts to deteriorate quite quickly but as long as it arrives in the lab within 36 (?) hours it should be useable.

I am 15 years on from my negative qPCR results, but still have to attend for qPCR testing every 6 months. Maybe one day I will go down to once every 12 months.

Sandy

For Scuba: I understand your hesitation, to have to test more often if you attempt TFR. But you have worked so hard (with supplements and fasting) to combat your CML. It’s time to test your theory.
It is important at the beginning to test often for you because you don’t really know where you are with your pcr, undetected could mean many levels.
When I stopped Sprycel, I had a value, my pcr was less than 0.002%. It is easier to check for any increase this way. I knew that I had 2 logs before my pcr could be at a dangerous level. First I tested every month for 2 months and when I did not see any movement, I went to 6 weeks and so on and so forth. Now, after 24 months, I test every 4-5 months. In the clinical trials, they had to follow the protocol and test participants every month. But you don’t have to.

Let us know your progress and we will cheer with you every step of the way.