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Coming off Glivec

Hi everyone, I have just been to clinic and I continue to hold a PCR of 0.00!!( and a log reduction of 4.5, although I still don't understand this. ha!)Which is great, but what is even better, is that they are thinking of starting a trial in 2012 for people in my position to come off the meds.. ( at Liverpool Royal hosp) Prof Clark said there is still a lot of work to do yet, but at least there is talk. It's amazing how far we have all come with Glivec and the other drugs. Take care everyone.

 

Liz x

Hi Liz

Congratulations.  That's great news. I am interested in what you hear about the trial in the future - last time I saw my consultant (I too am fortunate to be at "zero" by PCR) I was told about possible "stop" trials coming but only after I had been undetectable for at least 2 years, which I hope will be in November 2011. Not sure I will want to go on one as from what I read, you have a 50/50 chance of it becoming detectable again and personally I think I might hang on a bit as Glivec isn't causing me problems and I am not sure I want to run the risk just yet.  Would be interested to know what you get told going forward.

On your PCR, 4.5 log is a reflection of the sensitivity of the PCR test.  4.5 log is generally accepted as "complete molecular remission" (CMR) but it doesn't mean absolute zero. What it means is that by your test, they can't see beyond a 4.5 log reduction in your BCR/ABL levels as that's the maximum sensitivity of their test. If they could measure more sensitively then they could give a different log reduction number. The more zeros they can report after the decimal point, the greater log reduction they can say there has been.  That doesn't mean you haven't got better than 4.5 - you may well have. So may I - I don't know either.  They can't tell us.  However, in no case with any PCR testing would an absolute zero be reportable - that sort of accuracy is impossible.  Having said that, I am told that ultra sensitive tests are coming (up to 7 log or maybe even one more - 0.00000 or better) which would be used to help identify when patients might be more likely to stay in CMR when coming off Glivec. Ie to improve on the 50/50.  That's what we can look forward to - and to getting more and more patients into that area, whether with imatinib, or any of the newer drugs.  It is, truly, amazing.

Richard

Hi Richard,

 Yes I completely understand how you would feel about coming off  Glivec. I was diagnosed in March 2007, and have been undetectable since Dec 07. I initially thought the same, that Glivec worked well for me and was happy to stay on it, and I still do. But there is a little part of me, that would like to give it ago, just to see if I can stay in remission. I am now in my forth year of Glivec and have been very fortunate with side effects, occasional swelling around my eyes... but not much to moan about. I am so grateful for it!!! But if I was under the watchful eye of a trial and the great team I see at RLH I would like to see what happens.

 Prof didn't go into much detail and said there is a lot of work to go into it yet, they have to meet with a board etc and it still might get rejected, but I am excited to see what happens. He seems to think it would be ideal for someone in my position. By 2012 I will of hopefully held remission of 5 years!

Thanks for the explanation with the log reduction, I find I am blinded by science sometimes, he did explain that my log would prob be better but the tests aren't that sensitive. It would be great to see a log of 7 hey!

Well done for being at zero too, it is a great place to be.

Best wishes, Liz x

Hi!

I live in France & my doctor is one of those conducting the trial which involves stopping Glivec after 2 years PCR-U, if all goes well with my next PCR I may stop in September.

I'm not really sure how I feel about it - since I'm a very anxious person & it's reassuring to know that glivec's keeping my CML at bay - a couple of years ago i stopped it for a week due to side effects & my PCr remained at zero.

Part of me does want to stop though because I'm worried about the long term effects of taking such a powerful drug & of course the vain part of me that would like to shed the 15kg gained since 2004.

If I do stop it will mean monthly PCR's & restarting glivec as soon as there's a positive result.  my doctor says there's roughly a 50% chance of remaining PCR-U & that patients who've had Interferon in the past are more likely to hold their remission,

will keep you posted,

Barbara

Thanks Barbara, it would be great to hear how you get on. I know how you feel, I would also be anxious, but I also worry about being on such strong drugs like you. I am sure we would be safe enough within a trial, as you say if a positive result came up, it would be straight back on Glivec.

Lots of luck Liz x

hi barbara im sharon and im new to this site, i was told i had cml in aug 2007 ive been on glivec since then, im now in remmision was just wondering if you know how long they like you to stay on glivec for.

I've been taking Glivec since July 2004.

There's no minimum time to be on Glivec, you simply have to have been PCR-U for 2 years in a row.

My first PCR-U was in July 2006, but then I had 2 minor positives in March 2007 &  March 2008, have now been negative since July 2008.

The STIM study is due to reopen here in a month or two, until then I'm taking my Glivec as normal.

Hope this helps,

Barbara

XXX

Hi Liz,

What you are doing is great and I believe this pioneering work will lead to a better understanding of the limits of our present technologies. The most important point in my case is to maintain my status for as long as possible. 

The limiting factor of PCR testing is the degree of accuracy of the results as "amplification" is involved to reach the tiny percentages we look at. At this level variations can easily occur. This is why it is of greater importance to look for a trend in the results.

But I love your courage and well done to your treating Physician. 

Hopefully we all face a future where a true Complete Molecular Response is possible for all. 

Hi, My father just attended the annual ESH conference held in Washington DC.  Not to frighten anyone - and I'm not sure of the details - but he said that there was significant discussion about disease dormancy.  In other words, patients can be molecular 0 for 20 years and then the disease resurges.  It was thought that when the disease returns after a prolonged dormancy, that it could be in a more aggressive form.

However, there is still a question of whether molecular 0 = cure.

I'm sure there must be abstracts from the 2010 ESH conference online.  The scientists in attendance are the best and brightest from around the world.

Best of luck.

Tracey

 

Hi Tracey,

Wow that is a bit scary actually.

A few questions though, how do they know? considering TKI's have only been around for approx 10 years? 

Does that apply to all TKI's or just Glivec?

I don't think many people dare to believe that whilst taking Glivec a molecular 0 = cure, I think its just a great way of controlling it ATM. Coming off Glivec would definitely be a huge risk.

I'll be asking my consultant about this next month. 

Thanks Liz. x

Hiya Tracey,

one more question.

Is this if we stopped Glivec or even if we stayed on it, we can expect for it to come back more aggressive in 20 years?

As I understand it, there is zero, and there is zero. In other words, PCRU as currently measured isn't necessarily zero at all and those that are PCRU will have different depths of response. Some may be just beyond a 4.5 log reduction, and others may be 5, 6, 7, 8 or even more below. The problem is, current PCR testing doesn't tell you where beyond 4.5 log reduction you are.  And that's part of the answer to "how do they know" - there's research trying to correlate those who maintain PCRU off Glivec (and it could indeed be any other TKI) and the depth of response beyond PCRU which can be measured using more sensitive techiniques.  This is coupled with investigation into immune therapies (vaccines) to stimulate the body's own defences to keep anything residual in check, and research into ways to deal with leukaemic stem cells that may (or probably do) survive Glivec.

All of this is happening now for several reasons - we don't know the long term effects of TKIs (ie what the adverse events may be in 20 years - hopefully nothing) but we are learning much more about individual responses to them, and that they vary from  minor and major, to PCRU and deep PCRU, and all at different speeds (which may or may not be an indication of how stable PCRU may be if the drugs are stopped).  This means that long term strategies will vary for different patients. But all of this is at a still very early stage. Still, huge amount of progress in 10-15 years already.