Does anyone know if there is a resource tracking how many people are in TFR? By country or worldwide or other? Eight years since diagnosis, if I have an undetectable lab test in May I will start TFR. I am curious to know what we know about people’s experiences, other than the clinical trials. TFR seems to be the standard of care, if the patient wishes, after two years of undetectable lab results. But it’s still very new, right? Six years on imatinib, two years on dasatinib. Dasatinib brought my labs down quickly and so far, without variation. Thanks.
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TFR population data
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Hi Justine,
We barely have good registers of CML patients in any country, so while we have good data from many clinical trials around TFR there is less centralised “real world” data available.
TFR isn’t really very new though, and the guidelines on whether to try it or not vary a little bit from country to country. But they roughly all agree that 5 years on treatment, with the most recent 2 at a deep response is a good starting point.
We still don’t have really good prognostic indicators about who will be successful with TFR or not. Some people, like Martin from South Africa in this group, attempted it sort of accidentally and have had great success and others looked to be ideal candidates but failed it very quickly. It is really quite individual and I suspect there is a lot more science we are yet to learn.
David.
Hi Justine,
Like you, I wish there were more statistics on TFR, but I guess the long-term success rates haven't been established. As David says, I had to try it accidentally due to drug side effects, and I would never even have been considered given my high-risk scores on the prognostic indicators and a slow response to hit the milestones. In 9 years of living with CML, I have also only ever had one undetectable test. I agree with David that the results will be highly individual and that you never know what will happen until you try!
It can be hard psychologically to stop because you may feel that you are doing nothing to fight CML anymore and it's now up to your body to keep it at bay. But every study I've read shows that people tend to respond quickly when they restart the TKI and can usually bring it back to undetected in a couple of months or so.
Best of luck and please keep us informed! Every experience helps someone, somewhere!
Martin
Hi Justine, Good luck. I think I may have pointed you at this video before, but if not you might find it useful to look at https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-... From about half way through Prof Clarke describes the Destiny trial findings about the likelihood of successful TFR. Hope that's useful.
Alastair