6 replies to this topic

[kat73]

I'm curious about something and don't recall ever seeing anything specific on this:  What is the percentage now of CML patients at, say, 10 years of TKI therapy who have NOT reached beyond MMR?  I don't know if it's just me, but I feel like so many people on this forum have reached PCRU or at least MR4 or 4.5, and at pretty early dates, too.  The stop studies, of course, only include that cohort.  I wonder about the rest of the general CML population.  Is it somewhere around 75%?  After the flurry over TFR settles down in the next few years, I sure hope someone looks out for the rest of us.  If we haven't gotten below MMR in 10 years, is it ever going to happen? 

[r06ue1]

Immunotherapy and what is going on in the UK is the real solution to our disease, not TFR.  I'm still not 100% sold on that being a cure.  Our bodies failed in that our immune systems did not detect and fix/destroy the LSC's, I don't believe that our immune systems (for those that are TFR) suddenly corrected themselves and there is no longer a problem.  Scientists believe that LSC's can survive for decades so just because you are TFR today, doesn't mean that the CML won't be back tomorrow.  Correcting our immune systems should always be the ultimate goal.  

 

Yes, not having to take this damn medicine would be nice, but 50% of us, even when we reach PCRU, will still have to take the medicine.  TFR is a nice to have but it isn't the cure.

[beno]

I wonder if insurance companies won't eventually start to encourage and/or force people who are PCRU for a period of time to try stopping.  They have a huge fiscal incentive to do this and as more studies say it is safe to try, I wonder if that will happen.

[kat73]

But does anyone know the percentage of people who have not gotten below MMR by 10 years?

[Trey]

No reliable data on CMR (PCRU) but there is good data on patients continuing to achieve first-time MMR over 8 years:

http://www.ncbi.nlm....d-6-1-e2014007/

http://www.bloodjour...ent/116/19/3758

 

The IRIS study was the longest follow-up of any TKI group (8 years).  If you look up data on IRIS you can find some useful data.

 

Extrapolating from the IRIS study info about MMR achievement continuing over many years, I am sure the same has happened for CMR, maybe even over a longer period of time.

[r06ue1]

Insurance companies will probably put pressure on Oncologists rather than patients, they wouldn't want to risk a lawsuit.

[thatguy]

You keep on truckin' Kat! I'm interested too...