Jump to content


Photo

Two year results


  • Please log in to reply
13 replies to this topic

#1 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 28 June 2012 - 01:30 PM

On the two year anniversary of my dx, my love hate relationship with PCR tests falls into the love column today.  My PCR went undetectable again.  So that makes three CMR results alternating with low level positive results the other three tests.  I should just go to 6 month testing and save myself the emotional trauma.  I felt like this was a big test because I wanted to be in a good place at the two year mark.  I was spooked after my last test when it jumped from negative to .004.  I know that number is still low, but the previous detection was something like .00087.  So the full decimal point movement was stressful.  It goes to show that there is variability in the PCR and while the emotional side wears on us, we do have to try our best to not let our minds wander too much.

I know not everyone is doing as well and I think about all of you all the time.  For newly diagnosed people, hang in there, life can get back to some semblance of normal.  Of course it never gets 100% where it was, but we can still live rich and meaningful lives, even with this lousy baggage we have.

Best wishes to all.


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%
 

 


#2 katiekatjacob

katiekatjacob

    New Member

  • Members
  • Pip
  • 0 posts

Posted 28 June 2012 - 02:52 PM

Great news, Call me lucky!! Wonderful to hear. Just wanted to share with you this company that has been in the press a lot lately for what it's enabling with regard to reliable health information. 

HealthTap is for asking health related (going back to work questions) of doctors and specialists. The company just launched a new product enabling users to interact in real time with doctors, and it has been helping me through my own battle.

I guess HealthTap is coming out with a huge new product today, have you tried it yet? I just read this article: [URL="http://blogs.reuters...with-healthtap/"]http://blogs.reuters...ealthtap/[/URL], which talks about the company and what if offers. Check it out!

xoxo Katie



#3 Melanie

Melanie

    Advanced Member

  • Members
  • PipPipPip
  • 219 posts
  • LocationArizona

Posted 28 June 2012 - 03:13 PM

Congratulations Lucky! Happy dance for you!

Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#4 Dina36

Dina36

    New Member

  • Members
  • Pip
  • 9 posts

Posted 28 June 2012 - 05:45 PM

Well said and what a great news for you Lucky...happy for YOU!!!!

Dina



#5 BY196

BY196

    New Member

  • Members
  • Pip
  • 0 posts

Posted 28 June 2012 - 06:00 PM

That's great news--congrats! I also went from PCRU to .004 and then back to PCRU a couple of weeks ago. My onc encouraged me not to get bent out of shape about the .004 because of the variability you mentioned. But I was still relieved when I got the PCRU this last time.

Beth



#6 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 28 June 2012 - 07:21 PM

Hi Lucky,

  Congratulations, I'm so happy for you, you deserve good news for a change. Take Care  Billie



#7 Ray99

Ray99

    New Member

  • Members
  • Pip
  • 9 posts

Posted 28 June 2012 - 08:32 PM

Lucky,

  Congratulations,  I am happy for you. This gives inspiration to the new comer.

Ray



#8 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 28 June 2012 - 08:38 PM

Great news, Lucky. Someone should shoot off fireworks in your honor. Hmm, maybe next week!!!

Judy



#9 LivingWellWithCML

LivingWellWithCML

    Advanced Member

  • Members
  • PipPipPip
  • 60 posts
  • LocationAtlanta, GA

Posted 28 June 2012 - 09:10 PM

Congratulations Lucky.  You give me (and so many others) a lot of hope!!  Keep living life (both the good parts and the challenging parts).  And oh by the way, two year CMR on Gleevec 400mg does mean that your prognosis for a super long and fruitful life is excellent ... just make sure you aren't missing doses until you're ready to take on a Stop TKI trial.

I am hoping to follow in your footsteps ... my 15 month PCR on Gleevec 400mg is approaching rapidly ...

Keep up the great response!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#10 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 28 June 2012 - 09:44 PM

More good news on my birthday.  Nice way to end the day. 

Long life to you,

Teds



#11 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 28 June 2012 - 10:02 PM

Thanks everybody.

Happy Birthdays Teds, may you have many many more........


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%
 

 


#12 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 28 June 2012 - 10:17 PM

Yes! *fist pump*

This is great news - congrats Lucky, that must a relief - I am stoked for you


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#13 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 29 June 2012 - 10:21 AM

Congrats, Lucky! 

Traci



#14 Cathy

Cathy

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts
  • LocationWilloughby oh

Posted 29 June 2012 - 11:45 AM

Congrulations ! Seems its your lucky day!

enjoy the summer!


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users