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PCR Stayed the same. Thoughts?


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#1 JoshLee

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Posted 12 October 2011 - 04:34 PM

Hi Everyone,

     So I just got my PCR test back from being on treatment for 8 months. At 6 months I was at a 1.1 log reduction and the next test basically stayed the same at 1.1. My onc. didn't do a fish and doesn't think it's necessary and seems to think that they fact that it didn't go UP is a good sign, but I am more concerned that it didn't go down....What do you think and what should my plan of action be? BMB at 6 Mo. showed 10% and again, PCR was at 1.1 at 6 and 8 Months. Next BMB scheduled for January. Thanks, Josh



#2 Taylor

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Posted 12 October 2011 - 04:45 PM

Hi Josh,

It's true that it's a good sign that the PCR is not increasing, but I would want a FISH still...I did a search and the last I saw is that you're 2/20 FISH.  That's pretty good, but I think it would be more telling to see if your PCR was the same but your FISH went up.

In any case I wouldn't be too concerned, I'd just ask for a FISH on peripheral blood.



#3 JoshLee

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Posted 12 October 2011 - 05:18 PM

My onc. won't agree to doing a FISH test. I really think it's necessary, but he thinks that it's not necessary since PCR is more sensitive than FISH. I don't know what do think about this and basically flat out asked for a FISH and he still said that he didn't think that it was necessary. My CBC is normal and he said my smear showed no blasts or immature cells. I DO think I need a FISH, but am I in any danger if I don't have one until late November? Trey?



#4 JoshLee

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Posted 12 October 2011 - 06:12 PM

Also, matched up with the control genes...Last time they were at 0.15 and 0.013. This time they were 0.16 and 0.014. I don't know what these numbers mean...My situation is unique because I live in an area and get tested and treated back home in Wisconsin. I fax CBC results every 4 weeks and go home for tests every 3 months. However, I am going home in November so any advice on what to talk to my oncologist about would be appreciated. Thanks, Josh



#5 Trey

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Posted 12 October 2011 - 07:15 PM

The PCRs seem to drop in spurts and level off at some points, then start down again.  There are no alarm bells going off about this.

What is the log reduction?  If you don't know, ask the Onc.



#6 JoshLee

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Posted 12 October 2011 - 07:45 PM

Hi Trey,

     The log reduction from diagnosis is 1.1. It stalled out at 3 months with no change. It was 1.1 at around 5 months and now at 8 months it is also 1.1. No notable change. My oncologist said that he is not worried about this and said that 3 months may not be long enough to see a noticeable difference at some points. I don't know if I buy this, but at some point I HAVE TO start trusting my oncologist. He told me not worry and I feel like I should take his advice because worrying a ton has never gotten me anywhere. I don't know why he doesn't want to run FISH. He just said that PCR is very sensitive and that it would be a waste of money to do a FISH. He said he would consider doing a bone marrow biopsy in November, but wanted to look at my CBC in 4 weeks. He said he looked at a smear and saw no immature cells and he thinks that as long as I am hematologically normal, we should just keep doing what we're doing. My platelets have also come back into the normal range for the first time since dx. I know CBC doesn't mean much, but it is nice to have those plts back. What do the ratio numbers mean? They have basically been the same at 0.14% and 0.016%. Last time they were 0.13% and 0.015%. I was dx at 1.2. Thanks Trey. -Josh



#7 Trey

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Posted 12 October 2011 - 08:48 PM

Your Onc seems to be doing well, even if a FISH might be preferred.  But that does not mean you are not being monitored well enough.

You wanted to know what the 0.14% and 0.016% mean.  What is the exact wording about the 0.14% and 0.016%?  The smaller one should be the control gene (usually ABL).



#8 JoshLee

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Posted 12 October 2011 - 09:09 PM

The 0.14% is like GDH or something and the 0.016% is something that starts with an "E". What is my actual percent? All I know is that it's a 1.1 log reduction. The report says something like Log Reduction 1.1  GHD-0.14% and then the second one says 0.016%. I really don't understand all of these numbers. Is it weird that my PCR didn't go down at all? I keep worrying that I have primary resistance or that I have a mutation. 



#9 JoshLee

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Posted 13 October 2011 - 06:29 AM

Okay here's a more indepth report: Done of PB.....The previous one, which is basically the same numbers wise, was done off of Bone Marrow

10/6/11

Pt. Result

BCR-ABL Quantitative Analysis

Result: Positive

% bcr/abl/G6pDH: 0.16 ( What does this mean?)

Equiv % K562: 0.014 (What does this mean?)

Log Fold Reduction: 1.1

I started out this journey at :

bcr/ablG6pDH: 1.2%

Equiv % K562: 0.18



#10 PhilB

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Posted 13 October 2011 - 09:10 AM

It would be far too dull if we just had one attempt to standardise PCR reporting.  Why not have three?

  1. International Scale - adjust all numbers to an agreed scale
  2. Report log reductions against the lab standard
  3. Report figures as a percentage of what the K562 cell line scores at your lab

Your lab (probably) doesn't report against the first of these, but they are giving you the other two, plus the raw data.

Going through all your numbers:

% bcr/abl/G6pDH: 0.16

     This just means they found 16 copies of BCRABL to every 10,000 copies of the control gene they used

Equiv % K562: 0.014

     Your results are 0.014% of those for cells derived from a particular 53 year old woman in Blast crisis

Log Fold Reduction: 1.1

     Your results are about one thirteenth of the lab standard for a newly dx patient

Basically pick one you like and stick with it.  I'd recommend the log reduction as having the simplest numbers to deal with and the easiest target to remember (ie 3)

I wouldn't stress too much at this stage about the apparent plateau* - there is so much variability in the results you can't spot a trend from 2 points.

Phil

* In the interests of strict accuracy, I would stress far too much about results like these, but you shouldn't.



#11 Trey

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Posted 13 October 2011 - 09:30 AM

Also, the G6PDH is a control gene used during PCR.  PCRs use them to ensure the PCR result is within quality control standards (some might say with derision "what quality?").  Most labs now use ABL as the control gene.  The BCR-ABL is measured as a ratio to the control gene, then converted to a percentage.  When ABL is used as the control gene it is written bcr-abl/abl.  When G6PDH is used as the control gene it is written bcr-abl/G6PDH.  (Note that I used a  "-"  to show the distinction, but the labs use a  "/"  which is confusing when ABL is used for BCR-ABL.)

Using the K562 comparison is interesting, but not of much value.



#12 JoshLee

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Posted 13 October 2011 - 09:45 AM

A final few questions for you Phil and Trey.

Is a stall like this "heard of" or has it been seen by either of you on this board with the PCR at this level? I haven't reached a 2 log reduction at 8 months on treatment...

Do either of you have any ideas as to what could be happening, disease wise that isn't allowing me to get down past this?

Does this show signs of resistance?

When would a medication change be in order?

Oncologist is telling me to be patient, but I really want to get to CCyR by 1 year and maybe switching to Sprycel is appropriate? What do you think?

Thanks, Josh



#13 PhilB

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Posted 13 October 2011 - 10:03 AM

The first question is 'have you really stalled'.  In terms of accuracy a PCR test is less like a speedometer and more like tying a long string to a  rock, throwing it out thw window and counting under your breath how long it takes for the string to go taut.  The test simply isn't accurate enough to say which direction you are moving in and how fast until you have more data points.

Have stalls been seen before?  Frequently.  Many peopel seem to taks a plateau - plunge - plateau - plunge approach to falling PCRs.  It doesn't mean resistance.

Trey is your man for explanations of what's really going on, but I tend to think of the various intermediate level stem cells hunkered down in pillboxes with their machine guns firing cells like mad at the approaching armies of Glivec.  They can keep you pinned down for a while, but eventually you get through and overrun them and can then cover a lot of ground quickly until you reach the next pillbox.  I've no idea if that is anything like the reality, but it works for me.

When would a switch be appropriate?  You met the 6 month target (< 35% on your BMB) and the 12 month target is CCR which is roughly 2 log.  If you haven't met that at 12 months then switching should definitely be considered.  If you only just meet it you could switch anyway (the guidelines pre-date the ready availability of the other drugs), but I'd think carefully about what side effects you have now vs what you might get on Sprycel before making that call.

All the best

Phil



#14 Trey

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Posted 13 October 2011 - 11:11 AM

Given the inaccuracies of the PCR, see what the next test shows then go from there.  If next PCR does not show a drop, a switch in drugs would be a good idea.



#15 markandelly

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Posted 13 October 2011 - 09:42 PM

I cant' find where you said how many mgs of gleevec you're on.  I dont' think your PCR score is very high.  Someone mentioned the testing is 10,000 cells but I think its 1 million. Maybe you should up your dose of gleevec unless your having bad side effects. Making sure you aren't drinking eating or taking other meds that might be blocking absorption also.  How do you feel?  



#16 JoshLee

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Posted 14 October 2011 - 07:34 AM

What do you mean you "Don't think my PCR score is very high"? Does that mean you think that it's too high at this point or that it wasn't high to begin with? I am on Tasigna. Other than the anxiety of these recent test scores, I feel amazing. My hgb is 15.6 and everything else is normal. I sit between 5-6 for WBC. I don't know what to think of PCR tests. My first PCR at 3 months showed no change, while my FISH went down to 22%. My second PCR showed a 1.1 log reduction with at 12% reduction on my cytogentics, which put me at around 10%. This time I just had a PCR done and they are not accurate. I was really hoping my onc. would want to run a FISH, but he wouldn't agree to it. I am very nervous and scared that I am not being taken care of in the best way and don't know why my oncologist is so obtuse to the idea of doing a FISH. My onc. doesn't seem concerened at all, but I am. I feel so good that I almost wish that I wouldn't be tested for these things at all. If you told me I had leukemia and I didn't know I had CML, I would laugh. Please don't say things that will worry me, I feel like my mental state is hanging on by a thread at this point. I f****** hate this sh**.

Message was edited by: Abena



#17 CallMeLucky

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Posted 14 October 2011 - 10:37 AM

Here's the thing - you are doing well, but you are in the early stages and still freaking out.  You want to be doing better, we always want to do better.  My PCR went to undetectable and then bounced to .00087 3 months later.  I could get upset about it, but I know this is the way it goes.  Right now you are responding as if you are in a sprint race, but your are not, you are in a marathon and you are going to tire yourself out going the way you are going.  We get so caught up in the numbers of a test that is known to not be that accurate and we pin all our hopes and dreams on it.  It doesn't make sense and it doesn't get you anywhere.  You are giving too much thought and worry to things that may never happen.  That is not a good use of your time.  You have been given a second chance to live your life despite having a serious illness, don't waste it worrying about if a fraction of a fraction ticked up or down.  You take that same test the next day and you get a completely different answer.  You want to know why I didn't get that upset when my PCR ticked back up?  Because I didn't see it as my PCR going back up, I just assumed the prior PCR test was wrong when it said it was undetectable.  the facts are your CML has been seriously, seriously slowed down.  You are not in danger of dying.  Your next test will most likely show a reduction.  Even if it doesn't and you continue to stay where you are, okay, you feel well and you are not going to die if your numbers level off at that low level.  Maybe you need to change drugs down the road to find something that works better for you, you can deal with that when the time comes.  All you are doing is making yourself nuts over something you have no control over and isn't that bad to warrant getting so upset over.  Look at some of the people who have been dealing with this for a long time.  You have people who spent years trying to reach CCyR.  I read of one person who wound up having something like 3 SCT before finally being CML free.  Most people just keep plugging along.  You have to work on getting to that point.  You have to put this out of your head for a while.  Enjoy the fact you feel well and enjoy the fact you are alive.

I think you should also call your doctor and just be very honest with him.  Tell him how worried you are and that no amount of assurance is going to calm you right now.  You feel the only thing that is going to help you settle down is to see the results of a FISH test and tell him you want him to run one for you.  I don't know what those results will really do for you, but if it helps you calm down then do it.  Life should not be spent with this kind of stress and worry, especially about things you can't control.

I hope you feel better soon.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#18 JoshLee

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Posted 14 October 2011 - 11:04 AM

Lucky,

    Thanks for the tough love, I really needed this. I feel like you walked into my head, took a peak around, and found out exactly how I was feeling. I will probably read this again later today. Thanks for your honesty, it is very appreciated. God Bless.






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