16 replies to this topic

[CallMeLucky]

So after upping my dose back to 100 mg 6 mo ago and dropping to undetectable 3 months ago, I have now bounced back up from negative to 0.047. Essentially a one log increase. By itself this number would be fine but this pattern has shown to be pretty clear that since I became detectable a year or so ago while on 50mg Sprycel every time they bump up my dose my PCR drops then the following test it jumps up again.
I am so frustrated with this. I need to repeat test in one month and if it climbs again I think they are going to switch me. The underlying question of course being what is driving this? Is it resistance, mutation, poorly metabolizing the drug, or is it just PCR irregularity that looks like something it's not? At this point it seems clear there is some level of resistance given that it keeps creeping back up. Thankfully I am still MMR, but since we are not looking to go higher than 100 mg on Sprycel if it climbs I won't have much choice.
I just don't get it, why this isn't stabilizing. The weird thing is Sprycel gave me a rough time when I started it, so we lowered dose and my body got used to it, now even at 100 I really don't feel much in the way of side effects. I suppose if my body got used to it maybe my cml got used to it too?

[scuba]

Hi Gary - It's been a while.

 

I was told that the second decimal place and lower is "noise" (0.04 ...in your case) and that results reported with a third decimal place are meaningless. With that in mind - losing response would be a concern if you saw a number in the first decimal place from where you are now (0.x).

 

You are almost certainly experiencing error range of the PCR test which can be one log and even larger when the residual is so low. Chances are your next test will be right back down again. Only if it were to move up to the next decimal place should you get concerned.

 

Having wrote that above - it's possible that diet changes () can influence metabolism of Sprycel in a way that can reduce its effectiveness. The liver plays an important role in this. You might note your diet changes over time and correlate to your PCR tests. It could also be vagaries of the testing Lab. Are your tests done by the same lab each time (same lab meaning same lab technician, not just facility!). In New York, it's quite possible that work loads are shared among the cancer centers. I believe that Sloan Kettering has their own as does M.D. Anderson. 

 

As long as your other blood markers are stable and in your case, quite normal - the 0.04 is probably a blip and will likely disappear next test. It happened to me when I had a test that went from 0.003 to 0.04 and then back to 0.010. Again - the third decimal place is meaningless. M.D. Anderson doesn't even report using the third decimal place anymore. And they don't get concerned unless MMR is lost (i.e. PCR > 0.1). I went undetected last test on only 20mg Sprycel. I actually expect that I won't go undetected at next test for the reasons above. My eye is on that first decimal place not changing from zero.

 

You're in the noise. Good that you stay there.

[Trey]

I agree that the .047 is very likely near the reporting cutoff for most labs.  So it could be essentially equivalent to your previous negative PCRs given PCR error levels.  You are probably hovering at a very low plateau.  But I also understand the frustration with having positive numbers reported at all.

Edited by Trey, 19 November 2014 - 11:07 AM.

[CallMeLucky]

Thanks for the guidance. It's nerve racking when you can't tell what is accurate movement vs test variance. There is one other factor in play, since my last pcru test result I was very sick with pneumonia I was hospitalized and on 6 different high dose antibiotics. My white counts were over 10k during the illness. I've also been taking a ton of Advil. Not sure if any of that could factor in. I also missed one dose of Sprycel when I was in hospital. Doubt that would make a 1 log increase though.
My big concern is always the dreaded T315i. If it's just that Sprycel is not optimal then I am fine with having to switch. Always scared of mutation especially since I lowered dose and my last onc warned that could lead to mutation.
The question I would like to know and Trey maybe you know this, is if someone were to develop T315i would they see any response to increase dosage of dasatinib? My thought and hope is that T315i would just show a steady increase and bumping up dose of a Tki that is not effective on that mutation would not slow it down. My thought is that if this is not noise and it is a pattern then whatever is causing it is responsive to dasatinib but not enough to keep it under control.
Thoughts?

[scuba]

Gary,

 

You do not have the T315i mutation. Your blood counts are normal. Nothing suggests mutation. In fact - you report taking lots of Ibuprofen (Advil). Ibuprofen interferes with Sprycel effectiveness. I was told to avoid NSAIDs as much as possible. I no longer take Advil (I take Curcumin instead!). Chances are you just had a blip on the PCR scale. Hang in there and report back at next test. 

 

You are absolutely going to be fine. If you don't drink wine - start. Have a glass of Cabernet. It will relax you and help to you to put things in perspective. 

[CallMeLucky]

Thanks Mike. I do this every time. In my nature I suppose, I definitely wasn't cut out for this, but I guess none of us really were.
I will try to keep perspective and not go to the worst place. I restarted curcumin and I am trying to avoid Advil. I got an rx for diclofenac for pain. It's an NSAID not sue how it could effect Sprycel. I read that where ibuprofen is not good with imatinib, diclofenac has synergistic effect. I don't know if it will make a difference so I will try to avoid as much as I can.

[Trey]

Kinase mutations show quick and sharp rises in PCR.  You are not showing signs of that.  And kinase mutations are rare after 2 years of drug therapy.  I don't know why Oncs continnue to say that low dosage TKIs can cause resistance and/or mutations.  That is about as likely as finding kangaroo dung in the cat litter box. 

[simone4]

Lucky, I remember your replying to me about the same issue about a year or

so ago. I was PCRU and then went to .04.  It seemed like a huge jump for me

then, but you reassured me.  The onc tested again in 2 months and it was .02.

It has stayed there for over a year, and then went back up to .04 again last month.

I know you don't want to go back to Gleevec, but it worked for you, so that is an

option.  It is a crap shoot with this PCR thingy, so just take the advise you

have offered to us during these times, and be patient.  You are o.k.

 

Take care.

Simone

[mdszj]

Callmelucky - I just read this thread and it is very similar to a situation I just went thru.  I just posted about it a few minutes ago.  My PCR values went from PCRU (for almost a year) to 0.043 back down to 0.005 on the latest retest.  As Scuba says, I am also wondering if it is possible that diet, for example with higher acid, can influence PCR values.  It may not help but I dont see that it can hurt anything.  Between that and the uncertainty of the test I am thinking that you are ok.  Good luck!!

[jjg]

Kinase mutations show quick and sharp rises in PCR.  You are not showing signs of that.  And kinase mutations are rare after 2 years of drug therapy.  I don't know why Oncs continnue to say that low dosage TKIs can cause resistance and/or mutations.  That is about as likely as finding kangaroo dung in the cat litter box. 

Well it's lucky my mum doesn't have cats because she sure does have a lot of kangaroos (& wallabies) hanging around pooping everywhere. Come to think of it, I had roo mince for dinner last night... so just be be sure of avoiding those mutations I will be careful not to be pooping in cat litter :-)

[SUE]

You know, somehow I had the feeling that we weren't finished with the topic of kangaroos and cats. 

[Marnie]

Well it's lucky my mum doesn't have cats because she sure does have a lot of kangaroos (& wallabies) hanging around pooping everywhere. Come to think of it, I had roo mince for dinner last night... so just be be sure of avoiding those mutations I will be careful not to be pooping in cat litter :-)

There are worse places you could be pooping. . .

[pammartin]

Why is poop such a funny word?  It's like the ketchup bottle making that squirting noise, it always makes me laugh

[Marnie]

I can no longer eat ketchup in restaurants, after sitting across from a family at Red Robin.  I saw the child open the ketchup bottle, squirt it onto his hamburger, and then lick the bottle before putting the cap back on.  Urg.  I can still do salt and pepper shakers that are on the restaurant table, but bottles that a child might lick. . .nope!

[Trey]

Roo poo cat scat humungus dungus.

 

What does Moose poo look like?

[gerry]

My doc recited the low dosage equals mutations to me the other day when I saw him. He feels that anything below the 300mg Gleevec is looking for trouble. They need to start tracking some data from people on lower dosage.  

 

Probably fill the kitty litter tray up in one go.

 

Marnie, thanks for the heads up on the sauce bottle, we seem to mainly have those sachets of tomato sauce here. Mind you I have held one of them back to front when I squeezed it and wound up with sauce all over me. My nephew thought it was hilarious and still remembers it some 10 years later.

[CallMeLucky]

Thank you everyone for your comments. It helps to sound off with others who understand what this is like.
I know I haven't been around as much, I switched jobs and I have been very busy. I will try to be around more to make sure I can return the favor.

Thanks again.