47 replies to this topic

[survenant]

See Moving treatment-free remission into mainstream clinical practice in CML

 

See also Treatment free remission (TFR)

[jmoorhou]

I wish this would be common knowledge for Hematologists.

[kat73]

Yeah.  I can't get my onc behind this at all.  He had a patient who met the criteria, tried quitting, it came back and they couldn't get control back, and he died.  Doctors are humans, too, and all it takes is an outlier with a horrible result to make a non-believer out of even the best scientist.

[tiredblood]

I started out at 123.210% (IS) at diagnosis, reached PCRU by 3 months, and maintained it for 22 months prior to stopping the TKI.  Then, when I stopped the TKI to see if I relapsed so I could have a BMB, I did relapse within 6 months as predicted.  The relapse was actually within 3 months. I was also told that once a relapse occurs, the numbers tend to rise pretty quickly. The PCR went from 0.065% to 0.575% in 3 days. With that in mind, I lean toward a more conservative approach. In my mind, I would need a lot more data and research.

[Buzzm1]

The PCR went from 0.065% to 0.575% in 3 days. 

tiredblood, to the best of my knowledge CML is a slow progression disease.  From everything that I have read I would be willing to bet that at least one of your readings is incorrect.  CML doesn't progress at that rate.

 

cml leukemia PCR BCR-ABL rate of change

 

l welcome any and all education on the issue

[gerry]

Dr Hughes who conducts the Australian stop trials reported that in the first six months it returns at a fast rate similar to the speed of it in Blast Phase. Note that I am talking about speed here not that it was Blast Phase.

[gerry]

Hi kat, at the moment they only report on one other person not responding to restarting. I wonder what the testing regime was for this person, sad they didn't appear to be able to pick it up in time. Plus I wonder if there were any other TKIs around at that time.

[Buzzm1]

We need some actual first hand information on the rate of CML progression during relapse.  From trial data we know that almost all who relapse do so within the first six months, with the median being 3.7 months (or so).  Relapsed participants were less than MR4.5 to begin with, and progressed to greater than MR3, so they lost/gained >1.5 log over that span.  

[Sandrea]

Slightly off topic, just about CML progress rate... 

 

http://onlinelibrary...cncr.22046/full

Sudden blast crisis in patients with Philadelphia chromosome-positive chronic myeloid leukemia who achieved complete cytogenetic remission after imatinib therapy: "In 6 patients, blast crisis was sudden (defined as the abrupt onset of transformation occurring within 3 months of a documented CCR)". And also  http://www.ncbi.nlm....pubmed/22192245

[rcase13]

Thanks, Sandrea that is all I needed. I will be popping pills indefinantly. No TFR for me. I finally got PCRU. I will do my best to keep it forever.

Yes I am a chicken. Proud of it!

[Buzzm1]

Thanks, Sandrea that is all I needed. I will be popping pills indefinantly. No TFR for me. I finally got PCRU. I will do my best to keep it forever.

Yes I am a chicken. Proud of it!

 

A very. very, small percentage of patients progressing into blast crisis after CCR has absolutely nothing to do with patients stopping TKI treatment after an extended period of CMR/PCRU.  There isn't any need to spread unnecessary fear, apprehension, and paranoia, with regard to this disease.  Patients who relapse after stopping TKI treatment almost invariably regain MMR and CMR/PCRU.  Read into the Stop Studies

[Frogiegirl]

These discussions are exactly why I walk the line about cessation, and pregnancy. I don't consider myself chicken just somewhat a control freak and not knowing if I can accomplish an uneventful pregnancy is scary. So I'm trying to stay informed, that's all I can do. Right?

[Buzzm1]

These discussions are exactly why I walk the line about cessation, and pregnancy. I don't consider myself chicken just somewhat a control freak and not knowing if I can accomplish an uneventful pregnancy is scary. So I'm trying to stay informed, that's all I can do. Right?

Frogiegirl, hopefully your Onc, and OBGYN are both fully educated on the risks involved with this disease and pregnancy and can help you reach a decision.  Still, ultimately it is your decision to make, and it is a very big decision. 

[gerry]

The article is from 2006, Gleevec was the only available TKI, Tasigna was in trial. As Buzz commented CCyR was the only level achieved.

[tiredblood]

FWIW, here are my numbers:

 

10/12 discontinued nilotinib 300mg twice daily after 22 months (123.210% at diagnosis, reached PCRU at 3 months).

11/23 0.000%

01/04 0.065%

01/07 0.575%

01/11 0.153% (restarted nilotinib at 150mg twice daily)

02/03 0.200%

04/04 0.000%

 

Throughout treatment, my WBCs and neutrophils have remained slightly elevated. No one has been able to explain this so far.

[rcase13]

I think some including me may have confused CCR with CMR. Which are two completely different things.

Keeping calm and carrying on...

Hard to believe the drug that is saving my life was in trials in 2006. That wasn't that long ago.

Thanks Buzz and Gerry for keeping us straight...

[r06ue1]

Until there's a cure for this damn thing I won't be stopping my drug, maybe lowering dosage but only after I hit CMR and have been CMR for a long time.

[rcase13]

Until there's a cure for this damn thing I won't be stopping my drug, maybe lowering dosage but only after I hit CMR and have been CMR for a long time.

 

That is basically my stance. My doctor is also in the same boat. He really wants a patient to wait 5 full PCRU years before considering stopping the meds. He thinks 5 years will offer much better success rates. We just need to keep having these studies to figure out why some can and some can't.

 

The good thing is there does seem to be a lot interest in finding out why some can't and why some can. Exciting times for sure.

 

I'm thankful for brave souls like Scuba and many others for paving the way for the rest of us.

[r06ue1]

My Oncologist said 2 years but with a wife and 7 month old even then I don't think I want to risk it.  I'll keep taking the medicine, new one's are on the way with less side effects and possibly better results so who knows, in 2 years maybe we won't even need to worry about this anymore?  

[Buzzm1]

Hopefully, in the near future, after being PCRU for a year, or at a very low reading for an extended period of time, TKI dosage reduction will begin to be encouraged.  It doesn't take much in the way of TKI dosage to control CML at these low levels.  TKI's are toxic medications and we should only take what is absolutely necessary because of the risk involved.  I cringe every time I hear of someone who has been PCRU for many years and is still on full dosage.