21 replies to this topic

[SusanL]

Anyone out there 10 yrs after diagnosis who still have not achieved PCRU?

Do you still work at getting there?

Is there any hope of getting there after 10 yrs?

Does having those low levels still detectable put you at risk for relapse?

I've been on all 4 TKI, would going back to first drug and trying Glevec again be advisable? 

or do I just accept low levels will be with me the rest of my life and pick the drug with the least side effects.

There has to be someone out there who has wrestled with these questions?  I hope you will share your experience, strength and hope

Susan

[Headi]

Hello Susan,

I also hope to get some feedback on this question.  I am 6 1/2 years post dx., and still no PCRU. I have been on Tasigna for a couple of years now. The hospital I go to changed their lab, so my pcru numbers have gone up which was very disconcerting, but they say that is because of better detection methods at the new lab.  They are unconcerned with my test results and advise me not to worry I'm doing fine.  They don't seem to be looking for PCRU as long as the numbers stay low.  I've decided to take them at their word for the time being.

Headi

[rcase13]

I would think it would depend on why you switched off Gleevec in the first place. Was it due to side effects? If so they would probably return. If it was due to response and your numbers are low now then I would think it would be possible to go back to Gleevec. I have been on Tasigna for 15 months and hit 0.01% almost immediately but never went any lower. He thinks I could probably switch to Gleevec and maintain where I am but he wants to keep trying for undetectable before doing that.

 

I would love to just take one pill a day without needing to worry about not taking it with food and not eating before and after. Maybe even go back to taking a PPI for GERD. No PPI allowed with Tasigna. So I suffer in agony with GERD a lot of the time.

 

Good luck! Your story gives me hope that people that don't hit PCRU or DMR (as Trey likes to say) can live a long time.

[hannibellemo]

Susan,

 

Perhaps this video discussion can help with some of your questions about reaching PCRU and just how important (or unimportant) that really is.

 

https://www.youtube.com/watch?v=t3S0J0_0V48

 

I found it to be interesting.

[Cathy]

Susan ,

 

Hi I'm six years out and have never reached PCRU . But the doctors are not concerned I'm very low level numbers too I bounce around allot. And just try to live with it since they are not concerned at all.

 

Hang in there,

 

Cathy

 

[SusanL]

Susan,

 

Perhaps this video discussion can help with some of your questions about reaching PCRU and just how important (or unimportant) that really is.

 

https://www.youtube.com/watch?v=t3S0J0_0V48

 

I found it to be interesting.

to watch that, I have to disable a "restricted mode" on my computer and don't know how to do that.  But, I will assume they say,  "not that necessary to achieve PCRU". We have to take TKI's either way.  Being negative or low positive won't make day to day life any different.  I guess I can't shake that hope .... maybe.... some day.... maybe I can stop taking them little buggers that make my life a struggle but keep me alive.  ACCEPTANCE, how we fight it.

[triciad]

Almost 11 years for me and no PCRU.  Gleevec the first year.  No response.  Sprycel clinical trial for 2 1/2 years.  Pleural effusion.  Currently taking Tasigna for over 7 years.  PCR has gone up and down but never up enough to switch.  Side effects are good to almost nonexistent at 600mg.  I do not worry anymore about hitting PCRU.  I just think my zero is somewhere around .07 - .03.  Life is good!  All the best to you!

[hannibellemo]

Hmmm, sorry Susan, I answered your post to me but I no longer see it here. My take away  on the video is that the docs are discussing how the PCR digital testing will get more and more sensitive and fewer of us will attain or remain PCRU. 

 

My onc has also mentioned that several times in our discussions of what the benchmarks really mean.

[tinman1939]

Susan -

 

Like you, I am a turtle, clearly not sprinting to the PCRU finish line. This November will mark my 10-year cancerversary. I've not reached PCRU once. My latest PCR result was 4.5% or so, IS scale. My oncologist has me continuing with my current treatment: 30 mg of Iclusig daily. No switch is imminent, I suspect, unless there is a dramatic backslide in my test numbers. If there is, my oncologist has ok'd me going back to Tasigna, which I discontinued after a couple of months in 2013 due to a side effect I now have in control. We shall see what happens next. The CML saga continues ...

 

Wayne

[SusanL]

I guess my conclusion is, since I have to take these (opps, need to say that differently)  since I am fortunate to be able to take these TKI's,  and will have to take them the rest of my life (which because of them I have the opportunity to live), what does it matter if I stay low positive.  If I have been fine with low positive for 10 years, I probably will die with low positive from some other old age malady. 

[hannibellemo]

Couldn't agree more, Susan!

[kat73]

As they say, I feel your pain Susan.  My problem with accepting the low-positive-but-not-progressing scenario is, what about ever really feeling good ever again?  Like, EVER?  I'm in my 60's and I'm beginning to understand that I may stay pretty much where I am CML-wise and die of something else (gee, that's so NOT comforting a thought, oddly) and what does that mean?  That I spend the next 20 or so years (God willing) feeling pretty crappy and definitely, FOR SURE, about half the person I used to be, only 6-1/2 years ago?  I still essentially feel like that worm wriggling under the pin.  Trapped.  In limbo.  Not dying, but not living either.  I wish the oncs and scientists really understood this about us.  I know I should be grateful.  Just can't feel it.

[SusanL]

Oh Kat, thank you

  I used to be able to clearly define how or what I was feeling about something but lately I can only throw words out there that I remember and hope they come together in what I am trying to say.  Because there is a treatment for this disease and as they say I can live to a ripe old age and die of something un-related I always fee guilty complaining about the side effects of these powerful medications.  In addition to side effects there are the every 2-3 mo oncology apts for 12 yrs (I had breast cancer 2 yrs before CML) and the endless tests and procedures to be sure this or that isn't happening and the never being able to breathe a sigh of relieve, and say, that's over with.  There WILL be another shoe to drop, its just a matter of when.  But here again, I "shouldn't" complain, I should be grateful for a Dr. who is so diligent and determined to see I don't die of cancer.  It is a constant battle of, is the glass half empty or half full.

  I am grateful that I can come here and pour out both glasses and someone will understand

[kat73]

Susan - I think you defined it very well.  I know what you mean about waiting for that other shoe to drop.  I went through the whole nine yards on the breast cancer road and my calendar was just dotted with various doctors' visits and tests and surgeries for months, for years.  Still is, since there have been spin-off things from both the breast cancer treatments and the TKI's that now have to be followed by even MORE specialists, albeit not as often.  I was sort of shell-shocked for awhile and now I'm just worn out and angry.  I figured on falling apart like this like my mother, in her eighties, when all hell broke loose - but not my sixties!  I never once felt old before CML.  Now I do.  And the feeling that it will never get any better, only worse (with something else!) is really sad and hard to live with. I find myself very reluctant to schedule needed check-ups, since every time I have one now they find something.  I'd rather stay home and not know, honest to God. 

[thatguy]

Just wanted to say, your posts hit me at the core... what a way to live, but what a privilege to do so. We're undoubtedly fortunate to live in a time that we do. Although I know none of you, I feel complete resonance and empathy with your mental burdens and fears. Good luck to each of you and anyone who finds this on their road of research.

[Buzzm1]

Anyone out there 10 yrs after diagnosis who still have not achieved PCRU?

Do you still work at getting there?

Is there any hope of getting there after 10 yrs?

Does having those low levels still detectable put you at risk for relapse?

I've been on all 4 TKI, would going back to first drug and trying Glevec again be advisable? 

or do I just accept low levels will be with me the rest of my life and pick the drug with the least side effects.

There has to be someone out there who has wrestled with these questions?  I hope you will share your experience, strength and hope

Susan

SusanL, Gerry posted an ongoing study where patients who have stagnated at a low level were able to hold that low level at a much lower TKI dosage.  It might provide you a bit of a lift.

[kat73]

Dumb question after all this time, but here goes:  How do you find Gerry's (or others') post on the study, Buzz?

[Buzzm1]

Dumb question after all this time, but here goes:  How do you find Gerry's (or others') post on the study, Buzz?

kat73, use the advanced search feature, that we requested as a sorely needed improvement to this existing forum that was completely ignored while they went off and did their own thing ... or ask Gerry to repost it.  BTW, IIRC, you were the recipient of Gerry's post; Gerry's post included a link to discussion among members of the study.

[gerry]

Hi Susan,

I'm not sure which trial info Buzz is referring to - there is the Destiny trial where they are looking at lower levels of TKI, it is also part of the cessation trial. There was also another trial where they were pulsing the TKI through, 1 month on / 1 month off.

 

Couple of other articles you might be interested in, I'm not sure where the slides are that are referenced here, someone might be able to locate them https://www.lls.org/...22.15_FINAL.pdf

 

Dr. Jorge Cortes

"The complete cytogenetic response is very important because that is the one response that is associated with an improved survival, an improved probability of being alive in many years from now.

Major molecular response, the next level of a deeper response, it decreases the chances of the disease coming back. It doesn't improve any more the survival, the probability of being alive, but it improves the probability of the disease not coming back."

 

 

 

and http://www.ncbi.nlm....les/PMC4344171/

[scuba]

The quote above from Dr. Cortes is exactly what he told me in person (he's my Oncologist at M.D. Anderson). He cares most about CCyR - cytogenetic response. When patients achieve CCyR, chances of them dying from something other than CML is near 100%. His goal is to eliminate CML as a life ending disease. Getting to CCyR where FISH = zero is what he seeks for his patients.

 

Once there (i.e. CCyR where FISH = zero), then getting to MMR and below is what he works to do to see if living TKI free is possible. That, he said, is much harder. 50-50 chance. Those are great odds given we're dealing with cancer.

 

it goes back to my forum comments over the years that CML is not going to kill us - not like it used to. Not any more. I'm thankful for that. Can we be cured? For 50% of us, that is a real possibility. For - Trey - he's already there.