8 replies to this topic

[fola]

Hi CMLers,

I finally got my results back for my last PCR and it's just flat-i.e. .0023.  Here are my prior stats from before:

Jul 2009: 119% or 1.19 (from bone marrow.  I had a peripheral PCR from a few days earlier that registered 106% or 1.06)

Sept 2009: restarted G after liver reaction

Dec 2009: FISH 0% BCR-ABL

Feb2010: .5% or .0050

Jun2010: .06% or .0006 (gained MMR)

Sep2010: .14% or .0014 (lost MMR)

Oct2010: .22% or .0022

Dec2010: .23% or .0023

My doc says I have a couple options:

1. Stay on 400mg of G and wait until the next test in 3 months - she says there's still too little leukemia in my system to detect any further mutations.  So a BMB would just be painful and unnecessary.
   
2. Switch drugs - she doesn't want to increase my G dosage b/c of all of my side effects.  I couldn't agree more.
   

I welcome everyone's thoughts and would be glad to hear from others who have had the same stall experience.   From reading CallMeLucky's post, I think we may be in similar boats. 

P.S.  Hi Tedsey, I don't think we've ever interacted before, but I've read a lot of your posts.  Just wanted to say, glad to read you're doing well on Sprycel.

Fola

[Trey]

I assume your PCRs are on the International Scale, so that the .23% is not far from the .1% MMR level.  If so, there is no right or wrong answer.  You are doing well, but somewhat stalled out.  That is OK, but personally, if it were me, I would switch drugs to end the plateau and drive the numbers down.

[fola]

Hi Trey,

Thanks for your response.  To answer your question, Yes.  I'm on the international scale.  I think I might spend the next few months deciding whether to switch or not.  I know each drug is different, but all my G side effects have made me a little gun shy re the other drugs.  I won't know until I try.  I suppose in my head I'm still stuck on the G-devil I know.

Hope all is well with you and Texas.

Fola

[Tedsey]

Hi Fola,

I also had very serious side-effects on Gleevec.  My PCR was flat after 9 months.  So, my onc thought it was worth a try to switch drugs.  If my side-effects didn't improve, they might be the same or different.  Well, after 3 months, things have worked out very well on Sprycel.  I am CCyR!  A shock.  Very happy.  Although I am still considered low, my counts improved enough to make the quality of my life much, much better.  Good luck to you.  I think a drug change may be worth a try.  It seems nothing is carved in stone in your case and you have some wiggle room.

All the best,

Tedsey

[janekaye]

Hi Fola,

Not to throw out another possibility, but here goes........

I was dx in Sept. 08, so I'm just past my two-year mark.  The good news - I feel really good most of the time.  The bad? news - I have yet to reach PCRU.  I spent 8 months on Gleevec and have been on Sprycel ever since, which has been great for me.  But for some reason, I just can't seem to reach that magic PCRU level.  My PCR hovers in the .4, .2, .1 range but never (thus far) any lower.  I have another coming up this month, so who knows?  Maybe it will happen.

In the meantime, my CBCs and CMPs are absolutely great - probably better than before dx, although I can't imagine how or why.

So the bottom line is that I don't worry about the PCR that much - only at testing time when I know I have to see it in black and white on that report.  But the rest of the time, I live as if I'm CML-free and enjoy every day!

I don't like giving advice, but if I did, I'd say try to worry more about how you feel and less about the numbers.  If something's wrong, I think our bodies will let us know.  Maybe that's an unrealistic approach, but it's the one I'm taking for now.  Life's too short to worry needlessly.

I hope you get things straightened out - personally, your counts look good to me!

Take care,

-janekaye

[scuba]

Switch drugs and Nail the remaining CML.  Gleevec is going to become an orphan historical drug.  The newer drugs are just so much more powerful.

Unless you are like Trey or Susan with PCR=Zero - there's little benefit to staying with Gleevec (unless the other drugs are not tolerated by you).

I wish I had started with the newer drugs at diagnosis ... but it wasn't a choice at that time.

[CallMeLucky]

Where's the guarantee that switching drugs will get you to PCRu?  From what I have seen, unless I am not seeing the right studies (entirely possible) or missing this fact when I am looking at things, the newer drugs are more powerful and specifically targeted - they get people to CCyR faster and many to MMR faster.  I haven't seen the numbers that show all these people achieving CMR.  Are there a lot of people getting to CMR using Tasigna or Sprycel?  Maybe there are and that would be great.  My understanding is that a small percentage of individuals reach CMR and that CMR does not offer a better prognosis than MMR.  For that matter, I thought that the true milestone for long term prognosis is CCyR.  Achieving CCyR was the most notable factor for being disease progression free (ie staying in chronic phase) and overall survival.

I get that PCRU sounds really good and maybe it is much better, but given so many people seem not to get there, and the fact that at the present time it doesn't seem to suggest it is going to help you live longer, and the fact that the PCR test is not sensitive/accurate enough to tell you if you are truly CML free, then why should we set ourselves up to be constantly disappointed that we haven't achieved PCRu?

If your side effects are really bad on Gleevec then maybe a drug change is in order and if you are trully stalled then maybe a drug change is in order, but it would appear you have the luxury of watching and seeing.  Not sure if cost is a factor but Gleevec is less expensive and in a few years it is going to be much less expensive when a generic is available.

[fola]

Hi Janekaye,

You're right.  Sometimes it's easy to obsesses over the numbers.  It's nice to hear that you have been doing well on therapy for the past couple years without reaching the PCRU.  I hope you continue to receive low scores on your test!

Fola       

[fola]

Hi Michael & Lucky,

You both have really good points.  I've been weighing my options.  Sometimes I feel that switching would be the best option for me; not just because of my PCR numbers, but because of the G side effects.  I worry about the side effects of the other two approved drugs, I worry that if I switch, have even more adverse effects, and want to switch back, that my insurance company will be twicthy.   I worry about having to live with side effects for the rest of my life.  I developed CML in my twenties, and sometimes I just can't wrap my head around having to live like this for a long-time (if I'm lucky).  Basically, I just worry a lot. 

It's been a life-line knowing all of you are out there.  Anyway, I'm just rambling at this point.  Just wanted to say thanks for the support and even though I don't comment that much, I like keeping up with all of you through your posts.