Jump to content


Photo

2 consecutive PCR increases


  • Please log in to reply
11 replies to this topic

#1 daniel1403989267

daniel1403989267

    New Member

  • Members
  • Pip
  • 0 posts

Posted 21 January 2012 - 03:56 PM

Hi all,

I have experienced 2 consecutive PCR increase (0.053% -> 0.144% -> 0.194%). My onc wants to stay the course, retest in 4 weeks, plus conduct mutation testing, BMB and talk transplant options then. Seems generally sensible, but I feel like an immediate TKI change from tasigna to spyrcel would be a good idea. Based on my reading of the literature, 2 consecutive pcr increases is a pretty robust indicator of treatment failure / pending relapse. So my thinking is - I'm getting minimal therapeutic benefit from nilotinib so why not try something else? The worst that could happen is failure on that drug as well, in which case nothing is lost.

Any thoughts would be appreciated.

Cheers,

Daniel



#2 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 21 January 2012 - 04:01 PM

Just my 2 cents, but it does seem like the least invasive way to proceed would be to try the Sprycel route since it works differently than Gleevec and Tasigna (which is more like gleevec 2.0).  It couldn't hurt to try it, and if that doesn't work and you do have the 315 mutation (that is not quite the right name for it--but it is close), then there is also Ponotinib, which does work with that mutation. 

I am not qualified in the least to know if the increase you are experiencing is significant or not, or if it could be just a fluctuation in the test itself.

Good to have options, which you do have.....let us know what happens.

Best Wishes,

Caroline



#3 reedgirl

reedgirl

    Member

  • Members
  • PipPip
  • 19 posts

Posted 21 January 2012 - 04:11 PM

Daniel,

  How long were you on Tasigna and how long since diagnosis?  Sorry I don't have any knowledgeable information to advise you with, just curious what makes peoples number increase and why after taking a good, strong drug.  I'm with Caroline, I think I'd want to switch asap.

Best of luck to you!

Audrey



#4 daniel1403989267

daniel1403989267

    New Member

  • Members
  • Pip
  • 0 posts

Posted 21 January 2012 - 04:27 PM

Audrey and Caroline,

Thanks for your thoughts. I just had an email exchange with my onc (Kristy Richands - UNC Hospital, who I can't recommend highly enough) and I think I'm going to go ahead and switch to Sprycel.

Regarding your question Audrey I'm now in my 5th year of treatment and have been on Tasigna for slightly more than 2 years. I switched from Gleevec (to Tasigna) based on side effects and lack of MMR. The ultimate cause of relapse is a mystery. The mechanisms are beginning to be understood (kinase mutation in the BCR-ABL oncogene and/or upregulation of that gene's expression), but we are left to wonder as to what in our bodies or environments is the trigger.

Thanks for the community! Will keep you posted of any developments.

Best,

Daniel



#5 Dina

Dina

    New Member

  • Members
  • Pip
  • 0 posts

Posted 21 January 2012 - 05:06 PM

Hi Daniel,

Sorry to hear that Tasigna is not working for you anymore, have you ever archived MMR with Tasigna??

Hope that Sprycel is going to do its job.

Wish you all the best.

Dina



#6 daniel1403989267

daniel1403989267

    New Member

  • Members
  • Pip
  • 0 posts

Posted 21 January 2012 - 05:16 PM

Dina,

My lab doesn't quantify on the international scale, but based on my baseline pcr, I (ironically) achieved 3-log reduction for the first time the assessment prior to the 2 consecutive increases.

Best,
Daniel



#7 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 21 January 2012 - 06:53 PM

It is possible that the lowest PCR number was the fluke, since the other more recent PCRs show a statistically flat trend line.  Your Onc is not wrong to say wait and see, but an immediate switch to Sprycel is also reasonable.  Given the lack of superlative response over many years, if it were me, I would switch to Sprycel regardless of any other factors. 

Just curious, did your PCR start over 100% at diagnosis?  There was no International Scale then, so that would be very high.  To some degree, that makes the personal 3 log reduction (MMR) somewhat less useful than the lab average since it was so far off from normal range diagnostic PCR results.  Also, did you have any high risk factors or Accelerated Phase diagnosis?



#8 daniel1403989267

daniel1403989267

    New Member

  • Members
  • Pip
  • 0 posts

Posted 21 January 2012 - 07:20 PM

Trey,

I have been with UNC since diagnosis and they always report PCR as: "BCR-ABL p210 transcripts were detected at a level of *X* cells per 100,000 blood cells". At diagnosis I was at ~50,000 per 100,000, with FISH showing 95% Ph+. Based on what I have read, this is high for baseline. I did not have other high risk factors, with self-calculated back-of-the-envelope Sokal score low-medium, and a Chronic Phase diagnosis.

According to the lab assessment, the increases have not been statistically significant, and I have bounced around a little in the past 2.5 years with a mean level of ~0.15%, close to where I am now. So, I agree the dr is not being negligent, but also not acting aggressively. I had an email exchange with her earlier and think I will switch to Sprycel next week and get mutation testing within the month.

Pls share any other thoughts. Will post any new developments.

Best,
Daniel



#9 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 21 January 2012 - 07:27 PM

Hi Daniel:  I think I would go with the least invasive thing first, which would be the Sprycel.  It would be worth the try.

When I did my old Interferon treatment before our TKI's were available, my doctor had me running around to get ready for a BMT.  I just said Wait A Minute, lets slow down here.  I wanted to try the clinical trial for the Gleevec, and none of the doctors felt it was going to work.  I insisted that we do something like that first, and that was 13 years ago.  I was fortunate that the Gleevec did work for me, because there was no Tasigna or Sprycel.

     I know people who are in the clinical trial for the Ponatinib, and who have failed the other TKI's, and getting a excellent response.  No idea when the FDA is going to approve it.  I hope soon.

    I personally feel you have some open options here to try first.  Take Care and Keep us Posted

Susan



#10 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 21 January 2012 - 10:12 PM

OK, so PCR was 50% at diagnosis, which is high.  But  but otherwise Sprycel may provide better results.  Some people do not do as well on either Gleevec or Tasigna because they are very similar drugs; but Sprycel is very different in formulation. 



#11 daniel1403989267

daniel1403989267

    New Member

  • Members
  • Pip
  • 0 posts

Posted 03 March 2012 - 03:50 PM

Hi all,

Just wanted to give a short update of my situation. My most recent PCR came back at 0.073% down from 0.194%, so there is no evidence of relapse. Karyotype, marrow cytology and marrow FISH all support the PCR results indicating a continuing solid CCyR. Still a bit outside of MMR, but was a huge relief to know that I am not trending twd relapse or nilotinib resistance.

Now the only question is if I should follow through with plans to switch to dasatinib from nilotinib? Lack of optimal response over the past 4.5 years argues for switching, but "if it's not broke than don't try to fix it" suggests stay with nilotinib. Tough decision, but relatively speaking, a much easier dilemma than I was previously facing.

Best,

Daniel



#12 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 03 March 2012 - 06:26 PM

Daniel,

I do not have enough experience to offer advice, but I wish you the best of luck in whatever route you choose.

Pam






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users