13 replies to this topic

[Buzzm1]

How I Told My Kids I Quit the Medication That Saved My Life https://www.yahoo.co...-sh&soc_trk=tw 

 

One of the many reasons my doctors believe I'm a great candidate for the trial is because I've gone off the medication three times before, for about a year each time, to have my three children. It was a risk, but one we considered carefully. And my cancer remained in remission throughout my pregnancies, which means it should remain in remission this time, too.

 

little orange pill? ... hardly 

[mikefromillinois]

Is that you Buzz?

[Buzzm1]

Is that you Buzz?

Mike, the article is about the author who has been on Gleevec since 2001.

 

When do you test again?

[mikefromillinois]

In two weeks.  In my trial I tested monthly for six months.  Now I go in every two months.  If my test in two weeks is negative I will have eight months under my belt.  Time will tell....tic tock tic tock.

[Buzzm1]

Best of Luck to you Mike.

 

The one consistency among all of the STOP studies is that almost all of those who relapse after cessation, do so within the first six months, so, having successfully reached the six month point, the odds are now heavily in your favor, http://bit.ly/1XyGyL5

 

Plus the fact, that if I recall correctly, you have maintained PCRU for 7 years?, or so.  

Longevity of PCRU adds to your odds.

 

But there aren't any written guarantees so we have to continue testing, although less frequently; we'll likely always feel some level of anxiety while waiting for the results, no matter how long it has been.

[pammartin]

It is a bit random for actual information, but there are several people in the past year who have maintained an undetectable result for several years; one patient was 4.5 years, another 2 years, I would have to go through the group and read over the posts for accurate information.

 

My point in all of this is, I believe as long as there is no cure found for this disease I do not believe any of us are truly 'safe'.  For want of a better word.  Although the odds may be in my favor, I entered my choice to stop the TKI because of the severity of the PH fully believing at some point I would have to return to the medication. 

 

There is a vast amount of information known and more is learned every day about CML, but I also believe there is much unknown.  The questions go on and on for the response differences, the dosage, the effects, and our overall on and off the TKI's.

 

I believe stopping a TKI is a crap shoot.  You might hit the jackpot and you might lose your a$$.  To my knowledge there is no treatment out there for the deep rooted stem cells, perhaps they hang about lazy for a while then decide it is time to wake up.  Maybe they never wake up.  I am thankful every day I do not have to take a TKI, but I also understand that could change in one day/test result. 

 

I almost wish now I would attempted a low dose as Scuba is doing (disclaimer: this is not his ultimate goal), it would have potentially taken some of my unknown away.  I rarely think of the CML, but when I do it can be instantly uncomfortable and cause a panic attack because of the unknown.  When I read of a person, as I did last week who was undetectable for 4.5 years and is now at the point where a TKI is needed I am reminded once again, there are no certainties and definitely no guarantees. 

[kat73]

You are so right, Pammartin.  But at least in your case, you had a really bad alternative you are trying to avoid (the PH) and your decision is completely rational and defensible.  That has to make you feel better.  I hope it works out well and you are one of the Chosen Few!

 

I hope the author in the story can stay off, also.  I really liked the part where she said she already felt more energy!

[gerry]

I'm not sure the length of time is an indicator (sorry Trey), I'm aware of someone who has been PCRU for 9 years, off TKI for at least 4 years and has recently had the CML pop up at a low (noise) level.

 

I think it will always be there, we just have to hope the immune system contains it. 

[scuba]

I'm not sure the length of time is an indicator (sorry Trey), I'm aware of someone who has been PCRU for 9 years, off TKI for at least 4 years and has recently had the CML pop up at a low (noise) level.

 

I think it will always be there, we just have to hope the immune system contains it. 

 

When I studied the chromosome pairings 9 and 22 and learned how closely wrapped around each other they are right at the breakpoint where 9 and 22 translocate to create the bcr-abl gene, it's any wonder that PCRU is even possible. It really is an immune function to keep bad cells in check - either through eradication, population control, or forced differentiation leading to normal apoptosis. We get CML disease not because "One" bcr-abl stem cell is created, but because normal immune function that detects and either corrects, or destroys these cells fails to work like it should.

 

A so-called cure for CML lies not so much in getting rid of all CML stem cells as in conditioning the immune system to function again. Non CML people probably have bcr-abl cells created all of the time. They just don't have PCR tests to discover it. And the level of bcr-abl probably goes up and down all of the time normally. Probably at levels way below -4.5 log. 

 

There is even data that people who lose PCRU while off their TKI are able to stay at low level detected, but below MMR and stay that way or even drop back to PCRU without resuming therapy. Why? No one knows, but it accounts for 10% of the cessation test participants who try and stop and become detected again, but don't progress.

 

This is all speculation of course because no one knows. Seeing zeroes is what we seek every time we have a PCR test. And for 3 months it gives peace of mind - until the next test.

[kat73]

Scuba - Where did you find that data about the 10%?  How long have they been followed, off TKI, staying at or below MMR?

[Buzzm1]

I'm not sure the length of time is an indicator (sorry Trey), I'm aware of someone who has been PCRU for 9 years, off TKI for at least 4 years and has recently had the CML pop up at a low (noise) level.

 

I think it will always be there, we just have to hope the immune system contains it. 

From just one of the STOP studies: 

 

Among those on a TKI for eight years or more, only 26% lost their major molecular response (MMR) within six months of stopping treatment, compared to 47% of those on a TKI for fewer than eight years.

The duration of a deep molecular response was also important. Loss of MMR was 32% in those with a sustained 4-log reduction for more than five years, compared to 46% for those with a 4-log reduction for a shorter time.

 

there are also other STOP studies supporting that TKI duration is indeed a factor

 

peruse the data http://community.lls...h-cml/?p=180410

[Buzzm1]

Scuba - Where did you find that data about the 10%?  How long have they been followed, off TKI, staying at or below MMR?

kat, here's an eye-opener for you:

 

STIM2 http://bit.ly/1IbwZuh 2011

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.

[kat73]

Interesting, Buzz.  So many variables now that we didn't used to have in the old days.  First of all, nobody thought there would ever be a possibility of stopping, period.  Then they tried stopping, with the failure criterion being first loss of CMR.  Then it opened up to maybe just keeping MMR would be success.  Now they are addressing how long to be CMR before embarking on stopping.  I'll bet someday they'll be testing to see if we can stop when we get to MMR - then how many years of MMR.  But by that time the PCR test will have gotten sharper, probably, and throw a monkey wrench in.  And how to test the immune system's input?  We'll probably have a vaccine to try in the future.  And then there are the variables of combination treatment.  Lastly there will come a study of on and off treatment.  Yikes!  How will we know what to do, I wonder.  The years will tell - years and years.  Trouble is, we want to know NOW.  Wouldn't it be funny if someday people think back to now as being the "bad old days" when you had to slog through YEARS of side effects, anxiously ever striving for the magic zeros, also having to stay there for YEARS.  Right now I just wish we had more data on how LONG the successful stoppers are staying under the radar, and also how long the "fluctuators" are, also.  Is it ethical to let them fluctuate?  How far?  Presumably not past CCyR.  I can't afford 20 years to find this stuff out.    

[gerry]

When I studied the chromosome pairings 9 and 22 and learned how closely wrapped around each other they are right at the breakpoint where 9 and 22 translocate to create the bcr-abl gene, it's any wonder that PCRU is even possible. It really is an immune function to keep bad cells in check - either through eradication, population control, or forced differentiation leading to normal apoptosis. We get CML disease not because "One" bcr-abl stem cell is created, but because normal immune function that detects and either corrects, or destroys these cells fails to work like it should.

 

A so-called cure for CML lies not so much in getting rid of all CML stem cells as in conditioning the immune system to function again. Non CML people probably have bcr-abl cells created all of the time. They just don't have PCR tests to discover it. And the level of bcr-abl probably goes up and down all of the time normally. Probably at levels way below -4.5 log. 

 

There is even data that people who lose PCRU while off their TKI are able to stay at low level detected, but below MMR and stay that way or even drop back to PCRU without resuming therapy. Why? No one knows, but it accounts for 10% of the cessation test participants who try and stop and become detected again, but don't progress.

 

This is all speculation of course because no one knows. Seeing zeroes is what we seek every time we have a PCR test. And for 3 months it gives peace of mind - until the next test.

 

I know of a few people who have had blips whilst still retaining their TFR - I'll leave it to the trial results to put the exact measurement at 10%.