Jump to content


Photo

How may have never reached MMR and are still alive 5 years later?


  • Please log in to reply
10 replies to this topic

#1 Mayra

Mayra

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationAustin, TX

Posted 09 December 2013 - 03:46 PM

Sorry for the morbid question.   Just got my year PCR results and they basically stayed the same.

Three months ago I was .25 and today my scores came back .29.

Was really hoping for MMR and feeling discouraged.  So how important are these numbers anyway? I know everyone focuses on them but in reality will not achieving MMR lead you to not live past 5 years or can you live a long full life keeping a low level of disease in your system.

Thanks,

Mayra



#2 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 09 December 2013 - 06:08 PM

Hi Mayra:  That is a good question.  I know a few people who never achieved a PCRU result, and have been going on for over 10 years.  I am sure you will get a lot of responses.  When were you diagnosed?

Susan



#3 Mayra

Mayra

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationAustin, TX

Posted 09 December 2013 - 06:20 PM

Susan,

I was diagnosed one year ago. My numbers have decreased and I've had a steady 2 log reduction for six months. I'm on 100 mg of Sprycel with no side effects.  I reached cCYR by FISH at 6 months.  I'm just feeling depressed today. Not sure if I'm doing something wrong. Should I change my diet, try herbal supplements etc. 

Mayra



#4 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 09 December 2013 - 06:47 PM

I think Pam has been CCyR for at least 5 years.

Here's some info http://www.ncbi.nlm....pubmed/19525190

Abstract

Cytogenetic response (CyR), especially complete CyR (CCyR), has historically and is currently associated with a significant survival advantage in patients with chronic-phase chronic myeloid leukemia (CP-CML). CCyR represents a critical level of disease reduction irrespective of treatment type, and timely achievement demonstrates treatment-sensitive disease. Guidelines from European LeukemiaNet and the National Comprehensive Cancer Network therefore state that alternative therapies should be considered for patients not achieving CCyR by 6 or 12 months. Data from clinical trials indicate that early CCyR affords the best benefit:risk ratio by minimizing the mounting risk of disease progression, and the duration of CCyR when achieved affects disease progression. Treatment options for patients who fail to achieve CCyR on standard-dose imatinib (400 mg/day) include imatinib dose escalation, dasatinib, nilotinib, stem-cell transplantation, or a clinical trial. While molecular testing gauges further risk reduction, disease stability, and often elimination of BCR-ABL transcripts below detection threshold, CCyR remains the most important surrogate for long-term survival and cytogenetic testing remains a key part of patient care in the management of CML, particularly early in response. Longerterm follow-up data will be required to confirm CCyR as a surrogate marker for survival in imatinib-resistant patients treated with the secondgeneration tyrosine kinase inhibitors, dasatinib and nilotinib.



#5 Mayra

Mayra

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationAustin, TX

Posted 09 December 2013 - 06:59 PM

Thanks, Gerry! That makes me feel better. I'm wondering if I should go to 140mg of a Sprycel.



#6 Trey

Trey

    Advanced Member

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

Posted 09 December 2013 - 10:49 PM

The answer is that anyone who reaches and maintains CCyR (roughly 1% PCR by International Scale) has excellent survival statistics.  You are close to MMR at one year, so you are actually doing well.



#7 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 December 2013 - 01:34 AM

Sometimes people plateau for a little while as well and then things start moving again.



#8 cleocans

cleocans

    Advanced Member

  • Members
  • PipPipPip
  • 34 posts

Posted 10 December 2013 - 10:07 AM

Mayra when I started Sprycel 100mg I had a really good drop in my numbers.  It continued to drop until 0.151%.  It stayed there for a little over a year. It drove me nuts worrying!   I just got my latest PCR results back last month and it was 0.026%.  These results were from my 2 yr 3 month appt!  Like GerryL said some people plateau for awhile, I certainly did.



#9 Ray99

Ray99

    New Member

  • Members
  • Pip
  • 9 posts

Posted 10 December 2013 - 11:37 AM

Mayra,

   I can understand your anxiety since I have similar experience.  I am on Tasigna 600mg daily.  My PCR dropped very quickly in the first four months to below 1%.  Then, it bounced between .1% and .3% for the following 11 months.  I was somewhat concerned about the plateau. It then started going lower again. The last two reading are .046% and .062%.

   Hanging there.  It will resume the downward trend after a while.



#10 JeffJ

JeffJ

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 December 2013 - 02:59 PM

Hello Mayra,

I was slow to reach MMR, took 22 months on Gleevec, and then switched to 100 mg Sprycel, for another 10 months before getting 3 log reduction! Don't let it get you down, some people are quick to hit some are a little slower.  I was up to a 4 log reduction earlier this year, now slipping a little due to PE and was off Sprycel for 6 weeks, now on half dose, 50mg.  Good luck and you are doing well.  Jeff



#11 Mayra

Mayra

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationAustin, TX

Posted 10 December 2013 - 08:36 PM

Thanks everyone for your words of encouragement!! I knew folks on this board would understand.  It's  nice to see that others have had similar results.  It's frustrating when you don't meet milestones for a somewhat control freak and over achiever.  I feel like I'm taking a test and not scoring A's.  I keep wondering what else can I do.  I've decided to give up sodas again. It's my only vice since my doctor doesn't agree with me drinking wine.  I only drink one a day.  Maybe I should exercise more! It's exhausting to always be thinking about this.  I guess I should look at the bright side.  I'm still loosing weight.  I'm down 60 pounds since my initial diagnosis. No matter how much I eat the weight just keeps dropping.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users