11 replies to this topic

[Ray99]

Just got the 7 month PCR results.  It is somewhat disappointing.  The reading is 0.33%IS, a slight uptick from 0.23%IS of the 4 month test.  It is essentially a flat response.  My Onc said that it is a concern, but he would like to continue the same medication (Tasigna 600mg) for three more months and then check the results.  If it continue to stay flat, he will change the medication to Sprycel.  Does anybody have this type of response, PCR drop quickly and then stay flat?  What do you think of my Onc's assessment?  Has anybody switched from Tasigna to Sprycel and got a better response?

Would appreciate any comments.

[Trey]

PCRs often do not go down in a straight line.  There is usually an initial steep drop, followed by a slower downward trend, often with flat spots.  The reason is that the initial drop is due to killing off the easier to kill (lower level) leukemic cells.  After that it is harder to kill the remaining (higher level) ones, so the PCR can often flatten out.  Also, PCR results have a margin of error close to 1/2 log, which is another reason for flat spots.  Since your PCR has fallen well over 2 logs, this is not much of a concern.   I would just wait and see what the next 3 month PCR shows. 

[Ray99]

Thanks, Trey.

In a big scheme of things, this is not a bad response at 7th month.  It is that flattening out get me worry a little.

I will let you know the next results in 3 month.

[CallMeLucky]

I had similar issues, I would drop big, then have a slight uptick, then drop again, then slight uptick, then drop, then big uptick, then big drop.  Many of these times I was going in and out of PCRu.  PCR is not very accurate.  I think it is unfortunate that your doctor said it was "a concern".  Not sure how much experience your doctor has treating CML, but I think many CML experts would not have said that.  Watch the trend and see how it goes.  If you stall then certainly consider changing but it seems way to early to be "concerned" about one test showing flat.

[Ray99]

Lucky,

    Thanks for sharing your experience.  I understand that going in and out of PCRU may not be a big concern.  But, have your PCR reading  of "drop big and then have uptick" occurred before you reached MMR?  Have the flatten out or uptick ever lasted longer than three or six months?

I think my Onc's concern is the flatten out before MMR and he did recommend to observe for another three months.

    What would you suggest if the flatten out lasted over six month?  Does switching drug at that time make sense?  Well, if the next test reading is down, then it is not a concern any more.  Let's hope that would be the case.

[Tedsey]

In the past, I have had a decent drop, then went up again, then I dropped.  Now, I have been flat for 9 months and have gone through this twice already, (BTW, I am going today for another PCR, so we will see what happens).  Just to set things straight, CML is not like reaching weight or financial goals.  No matter what you do, how your body responds to the drugs is how you respond.  MMR shouldn't be a goal.  It should be a hope, and so should PCRU.  Often people do not reach those goals (I think oncs who tell there patients that they want to see them at  MMR or PCRU at such and such a time are overzealous and set their patients up for huge disappointment.  Most of the TKIs, depending on the one you are on, bring only about 50-64% to MMR at two years.  Most people do not achieve PCRU.  So don't stress yourself out.  I have been diagnosed 3 years at the end of this month.  I have only attained CCR and I hope to maintain it forever.  If I ever get to MMR, or better yet, PCRU, you guys will be the first to know.  But, I am very happy the CML is not progressing.  That is what we should all hope, MMR, and PCRU aside.  CCR, although not considered the best or deepest response, still means no progression.  Breathe a sigh of relief if you still have it.  But I still wish you the deepest response as I do all my friends here on the CML board.

Take care,

Tedsey

[Headi]

Trey & Call Me Lucky, Your replies to Ray99 re: dissppointing PCR results has lifted my spirits. I just had a similiar result. I had gotten to pcru on Sprycel, but had to go off for 7 weeks due to bilateral pleural effusions. Then on May 28th went on Tasigna, but only did half the dose (300mg). My pcr of Aug. 6 showed in increase to 0.136% . I then started full dosage (600mg) and on Oct. 23 my pcr had gone up again to 0.323%. My onc is concerned and is referring me to Moffitt in Tampa for consultation. He is worried about mutation and did a blood test for this, no results yet. Should I be worried? Could I have caused a mutation by being off TKI's for 7 weeks and then only doing half dose. What happens if I do have a mutation, is there a medication for that? I've been on all 3 TKI's so far. My onc. did not object to my half dose, he just made me come in every 3 weeks for cbc's which have been completely normal. I changed doctors just after getting the PE's, could it be due to a different lab? Sorry, so ,many questions, but you have been so helpful before. This is the only place I can get practical answers.  I will be grateful for any suggestions, help, information ect. that you can share with me.

Headi

[Ray99]

Tedsey,

   I fully understand your points, thanks,

   My Onc did tell me that only small percentage of people ever reached PCRU.  But he think, based on his better judgement I guess, that I am a good candidate to reach MMR.  I am actually feel good about my response so far, close to MMR at 7 month.  rNot really stressed out, but just wonder what is the next step or options, if the response stay flat.  It seems that switching drug is a logical choice.  Just not sure how long one should wait with flae response before switching.

   Wish all the best for you.

Ray

[CallMeLucky]

Ray

Here are my results for comparison note that my lab is not IS so besides the fact you cannot compare one person's results with anothers, in this case you really can't compare the numbers.  However if you look at trend there are similarities.  I don't look to give you hope or false hope, only to share info and stress that this is a chronic condition and it should be looked at as a marathon and not a sprint (IMHO)

Note that between months 3 and 5 there is a slight uptick, this is pre-MMR and then at month 8 there is a considerable drop.  At month 11, PCRu, then bobbing up and down.  See month 16 to 20  to 23, that drove me nuts, went from undetectable to .004 then back to undetectable.  So again, my point is just that these things do bounce, they are not perfectly accurate and I think you have to watch the overall trend.  Also note that if I had only been tested every 6 months (every other test result) it would have appeared that my response was absolutely perfect and assumed I have been PCRu since June 2011

Date	Months	FISH Percentage	PCR Percentage
7/7/2010	0	98%	1.20000%
10/25/2010	3	5%	0.25000%
12/13/2010	5	1%	0.36700%
3/14/2011	8	0%	0.00810%
6/13/2011	11	0%	0.00000%
9/19/2011	14	0%	0.00084%
12/5/2011	16		0.00000%
3/12/2012	20		0.00400%
6/11/2012	23		0.00000%
9/17/2012	26		0.00000%

[Ray99]

Lucky,

   Thanks for sharing the history.  You started with amazingly low PCR number.  It seems that all those numbers are all within the accuracy of the test.  I will not worry a thing until the next test.

[CallMeLucky]

Keep in mind that low PCR number may not be what you think it is.  It is not comparable to IS.  That number represents the ratio of BCR-ABL to a control gene.  I have tried for a very long time to figure out exactly how my lab works these numbers, I have even called the lab pretending I was writing a research paper to get one of the lab doctors to talk to me about the way they run PCR tests in their lab.  All I know is log reductions were never something I could really count on because I only knew my personal log reduction there was no lab standard to match against.  So I have always watched the trend and as long as it went down I was happy and when it went negative I knew that was enough "logs".  You'll note my FISH was 98% so I certainly had enough PH+ Chromosomes to show up and eliminate any doubt of what I actually had.  All in all though, my risk score has always been very low and I am very grateful for that.  I tried to calculate my Sokal score and couldn't come up with a number, I figured I just didn't understand the parameters, so I asked my doctor and she told me my score was too low to calculate.  This is one reason why I hold out hope that I may be able to stop treatment one day.  MY CML was caught early when i was young and pretty healthy.  Gleevec did the job, now maybe I can finish it off with Sprycel, get another year or two under my belt hopefully maintaining CMR and then possibly stop treatment and see what happens.  No way to know until I get there.  You're still starting out, give it some time and see where it goes you may be nicely surprised after the next test to see a good drop.

[Trey]

Headi,

A kinase mutation is unlikely the cause of the rise in PCR.  It is most likely due to being off drug for so long, and then taking too small a dosage of the new drug. 

I will add one footnote, however.  Since Sprycel handles most kinase mutations, if you had one all along (except for one called T315i), the Sprycel could have been overcoming it.  But I only add this because it is a slight possibility, not that you should be concerned about it.