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Disappointed with my one year results


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#1 Lizzybee

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Posted 08 August 2012 - 02:07 PM

I got my one year pcr yesterday.  It actually went up a bit instead of down.  At nine months, my pcr was 0.5% on the IS, so I was very hopeful of being MMR at one year.  Instead, it went up to 0.8%.  I know that's not a big increase, but I am so disappointed that it didn't even go down a little bit.  In 3 months, I will have another pcr, plus FISH and a mutation study.  I am going to try not to worry about it, since I know 0.8% is not a bad result for one year and I think my onc is just being proactive by doing the extra tests.  But still, I'm frustrated because I was really hoping to be MMR by now.  Come on in and join my pity party today, because tomorrow I will go back to being upbeat and positive (I hope).



#2 pamsouth

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Posted 08 August 2012 - 03:05 PM

Hey Lizzybee, 

Wow I am celebrating for you!!!!!!!!

>>Come on in and join my pity party today,<<

No pity party here.  I have been CCyR for almost several years and I am happy to be stable, without a lot of other complication and other low counts that I don't want.  Having as much quality of life as I can possible get, especially at my age 64 years.  That first year or two on Gleevec was yucky.

Actually thought I was PCRU for five years, but my previous lab Gen Path went over to the IS and last year my PCR  went up from PCRU to almost 50%, then did another pcr right aways and they were at 12 % I think.  This year I got a new onc where they do their labs and all their testing and results on the IS.   My new oncologist said I was never, ever, at PCRU, he, my new onc,  doesn't understand my labs from Gen Path in N.J., just that they couldn't have been right especially sometimes showing a low CCyR on my Fish and a PCRU, Does sound strange but even Gen Path said they retested on a couple different labs.  Well anyhow for five years I had the biggest smile, to be PCRU, see my brained believed it and it made me have a happy face, good endorphins or whatever.

>>>because tomorrow I will go back to being upbeat and positive (I hope).<<

Yes you are HAPPY, HAPPY, HAPPY!!    YOU were at .05 % then one year later .08%.  You are consistent, you are stable, and there is always a range of error.   I would be leaping for joy with stats like that!!!

I recently read on one of the boards of a patient being CCyR for 16 years!!  You are at .05 - .08 range!!! Congrats!

Lets see without review I forget which TKI you are on and the dosage?

I am thrilled for you. 

PamSouth


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#3 Lizzybee

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Posted 08 August 2012 - 03:20 PM

Hi Pam,

I am on Tasigna 300 mg twice daily.

My numbers are 0.5% and 0.8%, not .05% and .08%.  You are right, they are still good numbers for one year.  But I wanted to have MMR so, so bad. 

I can't even imagine your disappointment at finding out that you aren't PCRU and probably never were, after thinking that for 5 years.  I guess if you look at the bright side, you had 5 years of peace of mind.

You aren't helping me in my quest to feel sorry for myself.

Take care,

Elizabeth



#4 Trey

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Posted 08 August 2012 - 03:22 PM

At those levels there is no actual up or down that can be determined by PCR due to the margin of error.  The previous PCR  result could have been too low, so the .8% could actually be a decrease.  Also, I don't see why the Onc would order a mutation test -- they are not sensitive enough at your levels (more than 2 log reduction).



#5 pamsouth

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Posted 08 August 2012 - 03:32 PM

Hey Lizzybee, 

I too was wondering why your oncologist would want to do all the test when you are at more then a 2 log reduction.  Like Trey said there is a margin or error. Sometimes I'm not to sure about these PCR'S.  Even when my went up after Gen Path changed over it IS, my previous oncologist kept saying lots of room for errors on these PCR'S as they are magnified over and over.  Then once you reach a certain point. ..

HAPPY - HAPPY - HAPPY.

Still would ask around more about the necessity of doing more test on you like BMB and Mutations.  That seems a waste of time and money your discomfort.

Oh, i was wondering what your health insurance would think of paying for more test when you are doing so well??

PamSouth


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#6 Lizzybee

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Posted 08 August 2012 - 04:01 PM

I didn't know mutation tests aren't accurate after a 2 log reduction.  Maybe because of the margin of error he wants to confirm that I really am at >2 log reduction and CCyR?   I will ask him at my next appt.

My pcrs are done from peripheral blood and they said the fish will be, too.  I actually saw the NP rather than the onc, and she didn't mention a BMB.  Can the mutation study be done from peripheral blood, or should I assume I will be having a BMB in 3 months?

My health insurance has never denied or made a squeak about anything.  If my onc says it would be prudent to have additional tests, I am certain my insurance will pay for them.

Thanks for your input.



#7 pamsouth

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Posted 08 August 2012 - 04:21 PM

Lizzy,

I remember a post a long time ago, a post about the mutations.  Let me see if my memory recalls..  Something like once you are at a; 1, 2 or 3 log reduction and you have gotten rid of a lot of the CML Cells, a mutation could show up that could had already been there from the beginning.  Of  course most onc say, it is better to have a deeper response, as less chance of a new mutations.  Always a catch 22.  Risk for everything seems like.

Anyhow sounds like you have a good relationship with your onc, and you are wanting the test, and your not expecting any insurance problems.  The test would perhaps give you the peace of mind you looking for, since you are not so happy about your PCR.

Peace of Mind is a Good thing.

PamSouth


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#8 cleocans

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Posted 08 August 2012 - 06:37 PM

Lizzy, I felt the same way with my 1 year results.  I was 0.122% at 9 months and 0.151% at one year. I so wanted to see another zero after the decimal point.  I'm learning to live with stable!  Hopefully by October, my next test, I will see a downward trend!

Kim



#9 Lizzybee

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Posted 10 August 2012 - 11:06 AM

Thanks for the commiseration, Kim.  I am happy with my 2 log reduction, but I am also anxious to get to 3 logs. I'm a little jealous of people who were diagnosed after me and have already reached MMR or PCRU. 



#10 Tedsey

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Posted 10 August 2012 - 05:59 PM

Hi LIzzybee,

I understand how you feel.  I have almost been diagnosed 3 years and I am still only CCyR.  My six month PCR was much higher than yours and Kim's.  I assume you guys will get to MMR a lot faster.  Because all the issues I had on Gleevec and with CML, I was thrilled to get a CCyR at 1 year.  After that, little has changed.  But I have come to accept that no progression is no progression.  That will keep us around indefinitely CML-wise if it holds.

Please take care.  I am so sorry you didn't get what you had hoped for.  But I am glad you are still considered to be doing well.

Tedsey






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