Jump to content


Photo

Anyone still PH+ on their cytogenetic test 2 yrs post dx?


  • Please log in to reply
4 replies to this topic

#1 Melanie

Melanie

    Advanced Member

  • Members
  • PipPipPip
  • 219 posts
  • LocationArizona

Posted 16 October 2013 - 01:24 PM

Hello all!  Just wondering if anyone else is having a slow response time and what the prognosis is.  It's actually been 2.5 years post dx and I still have 3ph+ chromosomes. Really not all that unexpected considering I've had many TKI interruptions and never able to take full dosage of any TKI due to low counts.  Presently on Bosulif, neupogen shots, and clinical trial of promacta (for platelets) and have been able to stay on the TKI at 60% of full dosage for 9 months now, but I've been stuck at 3PH+ on my last two BMB. Local oncologist says there's just no data to know what to expect in this situation since TKI treatments are fairly new.  Old days prognosis for CML was 3-7 years, but does the TKI treatment slow that down when there's been some response...though not CCyR?  Typically the milestone is 18 months for CCyR...not much is said about what happens when that goal isn't achieved.  I'm being encouraged to consider SCT because of my age (59) risk and because they just don't know what to expect and of course it's a last resort.  Am I at that last resort point?  I'm feeling quite well... Any conversation would be welcomed...it's quite the quandary.

Blessings,

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)

#2 Trey

Trey

    Advanced Member

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

Posted 16 October 2013 - 10:33 PM

The response milestone statistics assume continuous TKI therapy at "therapeutic dosage".  Since you have not met those assumptions, the CCyR milestone timing does not apply.  So I would not try to use it as a basis for making any decisions. 

Overall you have done well enough given the circumstances.  You have needed to balance competing requirements of fighting CML while trying to keep enough blood cells flowing.  A number of folks here have done that.  Some break out of the low counts at about 2 years, and others continue with low counts.  There is no way to predict which way you will go.

The transplant would probably not be needed if you can continue to balance the CML and cell counts.  At this point you have no reason to believe you cannot. 

To put things in perspective, in the pre-TKI era you would be a top 5% responder and the Oncs would be amazed at how well you have done.  But today they are unhappy with your progress.

If it were me, I would keep plodding along. 



#3 Melanie

Melanie

    Advanced Member

  • Members
  • PipPipPip
  • 219 posts
  • LocationArizona

Posted 17 October 2013 - 11:57 AM

Thanks Trey!  Yes, I plan on continuing to plod along and keeping my balance.  My concern and I guess all the Dr's concern is that the longer I just plod along, the more risk I take on of either the CML progressing or I get too old and sick for a SCT.  There's no way of knowing if it's going to progress.  So, I'm wondering how long can people be stable with a few PH+ chromosomes floating around?  Could we not have been at that level for years before even knowing we had CML?  I know logically we all want "0" detection of CML in our blood, but is there any data to support the idea that partial CyR could be enough to keep one stable and not progress into a higher stage? Could that be good enough for the next 25-30 years?  Is the CML mother stem cell always going to find a way to get around the TKI at partial dosage?  I'm just not convinced that the fast and furious attack is the only way to win. I know we worry about losing response, but what does the data tell us happens when we do?  Do we always progress into blast stage and lose the fight or could it be we just lose the level of response we've been told is the only goal and we're still okay?  Of course my mind set is always optimistic, so I am plagued by "wishful" thinking. 

Praying for "good enough"...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 Trey

Trey

    Advanced Member

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

Posted 17 October 2013 - 06:15 PM

No one really knows all those answers, but stable is stable, and if someone is stable at 2 years then historically they do well over the longer term.  And is a 1 - 2% drop in FISH the difference between doing great and doing poorly?  I think not. 

Also, "too old" for transplant seems to be getting older as new advances are made.  You are not past the point of decision making.  You have a number of years to do that if necessary.

Sometimes "better is the enemy of good enough" if it involves significant risk. 



#5 Melanie

Melanie

    Advanced Member

  • Members
  • PipPipPip
  • 219 posts
  • LocationArizona

Posted 17 October 2013 - 11:07 PM

Thanks again Trey!  Well said and I appreciate your imput, especially "better is the enemy of good enough" if it involves significant risk. I'll be content with "good enough".


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)




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users