35 replies to this topic

[scuba]

Scuba, I'm curious why M D Anderson uses its own scale, not IS

 

Because they're special ... 

 

seriously - they developed their scale before the I.S. scale came into being. They simply continue to use their methods and scale to maintain historical continuity with their PCR testing over the years. 

 

As a major blood cancer research center they get to "write" the rules sort-of-speak. They prefer their scale than I.S. - although they do provide a rough correlation betweeen their scale and I.S.

 

0.1 M.D. Anderson scale is equivalent to 0.03 I.S. 

[Frogiegirl]

Intresting. ...Dr.Micheal Deineger is my doc up at huntsmans. He's the one willing to take this journey of trying to have my last baby with his support;) fabulous doc!

[Buzzm1]

I have been taking 80 mg Sprycel since Dec 2015.  Just had my latest blood draw and visit w/ local hemo a few weeks ago, and he brought up the subject of whether I want to discontinue my tki this Oct since that will be 2 years undetectable.  I was actually PCRU in Oct 2013 but then a year later in Oct 2014 I had a detectabe blip, which then went back PCRU.  This guy is really up on the latest blood stuff and goes to ASH every year.  He mentioned a German study that showed the stats for going off the TKI.  I have not read it yet but I will try to get hold of it.

 

So I told him I had been planning to bring it up but at this point I am not sure if I want to reduce to 50 mg first for a few (3-6?) months, or go straight cold turkey.  I will see how my next results are in June, maybe that will help me decide.

 

One thing I can tell you - I feel much better on 80 compared to 100.

 

Good luck!!

mdszj, it's your decision to make when you are ready; either to reduce your Sprycel dosage, or to stop altogether.  Both are "right decisions."  

The German study, your Onc mentioned is likely the EURO-SKI Stop Study http://bit.ly/1XyGyL5

You will feel even better on less than 80mg.

[Gail's]

So Scuba are you reporting your pcr status in IS or their scale?

[hannibellemo]

Physicians seem to ignore that there are many of us that are on a lower dose due to side effect avoidance, in my case, pleural effusion, yet we are doing quite well. Our situation does not really differ from those who just want to lower their dose for whatever reason. 

 

It took me longer to reach certain benchmarks but I still got there.

 

I would also like to encourage people to post their timeline, current status and other information in their signature line. It really helps when posting replies. It's difficult to keep where in their CML journey everyone is!

[mdszj]

hi buzzm1, thx for the link, I will check it out.  When I mentioned about signing up for the LAST trial, he said I dont need to bother with a trial, that we could just do it ourselves.  I dont have any problem with that since I think he knows his stuff.  But if that is how we plan it, I want to make sure that we are doing everything we should such as monitoring frequency, etc.  Not sure what else there is that I would need to do, probably not too much hopefully.

[Buzzm1]

I would also like to encourage people to post their timeline, current status and other information in their signature line. It really helps when posting replies. It's difficult to keep where in their CML journey everyone is!

I couldn't agree with you more ... it really helps ... thanks

 

to add your history/status into your signature

upper right, click on drop down menu next to your name..

select My Settings ..

on left-side, select Signature

scroll down, enter history/status info, Save Changes

thanks for participating

 

 

hi buzzm1, thx for the link, I will check it out.  When I mentioned about signing up for the LAST trial, he said I dont need to bother with a trial, that we could just do it ourselves.  I dont have any problem with that since I think he knows his stuff.  But if that is how we plan it, I want to make sure that we are doing everything we should such as monitoring frequency, etc.  Not sure what else there is that I would need to do, probably not too much hopefully.

 

mdszj, you have a very astute Onc.  It isn't at all necessary to be in a STOP Study to cease TKI dosage.  They aren't always convenient/geographically available and they are time-consuming.  Studies are done for the purpose of compiling stats, thus the frequent monitoring.  As has been mentioned, with rare exception, CML is basically a slow progressive disease.

 

Stopping - Stop Studies 

 

Relapse during cessation is defined as the loss of MMR:

a significant percentage of patients do lose PCRU, but don't lose MMR

 

i.e., STIM2 http://bit.ly/1IbwZuh2011

treated only with imatinib; DMR of at least 2 years duration

76 of 124 (61%) remained treatment free ... However 41 experienced a BCR-ABL RQ-PCR fluctuation without clear molecular relapse. In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times confirming that BCR-ABL reappearance does not mean automatically clinical relapse.

[mikefromillinois]

 

 

 

 

It isn't at all necessary to be in a STOP Study to cease TKI dosage.  They aren't always convenient/geographically available and they are time-consuming.  Studies are done for the purpose of compiling stats, thus the frequent monitoring.

 

 

 

 

I've been in a TKI stop trial for ten months.  Couple comments:

 

Trials are typically "run" by experts.  I liked my original onc plenty, but now that I am under the care of an expert I really feel like I am in better hands.

 

In my trial all of my (expensive) BCR-ABL blood work and almost all of my office visits are paid for by "the trial" and not be me or my insurance company.

 

And finally, and maybe most importantly, on all of my visits for bloodwork I spend an hour answering questions that all trial members all over the country also answer online.  Very in depth stuff.  My doctor told me that they hope to learn MUCH MORE about CML through this process.  In the end, if the doctors learn more about OUR disease...we will ALL benefit - not just those participating in the trial.

 

Mike

[gerry]

I think if you can get in a trial it is the best option, but for some of us it wasn't available, so we work with our own doctors. 

[Rice]

I've been on 100mg Sprycel since diagnosis 5/2015.

[MarCap73]

I was Dx in November 2015 and was immediately started on 100mg of Sprycel.  My onc, without me asking, brought up trying to reduce my dose in the future if I reach benchmarks.  

[scuba]

So Scuba are you reporting your pcr status in IS or their scale?

 

Sorry Gail, I should have labelled. I have been reporting my recent results in M.D. Anderson scale (i.e. PCR < 0.01%). It's in my signature line.

[scuba]

I was wondering if this works both ways, I have been consistently not meeting the expected milestones @100mg, and would like to try increasing my dosage. My doctor goes by the book and says it isn't an option. Has anyone out there tried a ny stronger a dose then 100mg?

 

Sprycel dose can go as high as 140mg. As long as you are not experiencing significant side effects that should be an option.

[Buzzm1]

I was Dx in November 2015 and was immediately started on 100mg of Sprycel.  My onc, without me asking, brought up trying to reduce my dose in the future if I reach benchmarks.  

MarCap, you have a very uptodate-thinking Onc.  Hopefully the days of patients being on high dosages of TKI's for indeterminate lengths of time are drawing to a close.  Ask your Onc. at what benchmarks he/she would consider reducing your dosage and to what levels.  That's something you have to look forward to.  Others here have shown that it isn't necessary to be on full dosage to reach the desired goal.  Balancing the risk/reward in the treatment of CML may be coming into play.  

[Buzzm1]

I've been on 100mg Sprycel since diagnosis 5/2015.

re: your PCR

10/20/15 - 0.83% (MD Anderson Cancer Center)

1/20/16 - 0.13% (Seattle Cancer Care alliance)

 

Looking really good Rice ... thanks for adding your history/status

[MarCap73]

MarCap, you have a very uptodate-thinking Onc.  Hopefully the days of patients being on high dosages of TKI's for indeterminate lengths of time are drawing to a close.  Ask your Onc. at what benchmarks he/she would consider reducing your dosage and to what levels.  That's something you have to look forward to.  Others here have shown that it isn't necessary to be on full dosage to reach the desired goal.  Balancing the risk/reward in the treatment of CML may be coming into play.  

 

Buzz,  I have actually had that part of the discussion with her and thought I was clear on it, but after thinking further on it, I do want to discuss that with her again just so I am clear.  I don't want to misquote or misinterpret by positing it on here yet.  

 

I am fortunate to live in the greater Boston area and access to the amazing hospitals in this area without having to travel all day for an appointment.  I can go to work in the morning leave for a few hours for an appointment and be back at my desk again.  That's a huge help in not having to burn up a whole day of sick time for an appointment.