Jump to content


Photo

The waiting begins


  • Please log in to reply
12 replies to this topic

#1 HeatherZ

HeatherZ

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 January 2012 - 09:08 AM

I have not posted much in recent months but have been following all the posts.  I just wanted to take a moment to say my waiting game begins again......... Just had my bloodwork done for my next appt.  My last 2 PCRs have shown increases so please say a prayer that my numbers have started to go down again.  I am currently at 21 months since dx and feeling very nervous about my progress.  The last few weeks I have been feeling really tired - more so than normal.  My Gleevec rash is back with a vengenance.  I am hoping the fatigue is due to Gleevec doing what it needs to in order to bring my numbers down.  Either that or maybe I just need iron again.  After my last appt when the onc told me the PCR number was up again (not a full log from its lowest point ever) I told him I thought I needed a drug switch and a mutation test.  He said that since it wasn't a full log yet it was to early to tell if it was Gleevec resistance and the guidelines didn't call for a mutation test yet.  He said after this round of blood work if the numbers increased again he would consider a drug switch.  I am fully preparing myself to demand a mutation test and a drug switch if my numbers go up again.  Am I right to make that demand?  Anyway, please say some prayers for me - I am trying to remain positive and not get too stressed but my numbers have been climbing since July.

Heather

dx 3/09 G400 since



#2 tiouki

tiouki

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 January 2012 - 09:14 AM

Hello!

I think you are right to do that demand. And I really hope the numbers will be decreasing this time.

If they are still increasing I am sure that either Tasigna or sprycel will deal with CML! Good luck for the waiting that's the hardest part.

Pierre



#3 Rissa

Rissa

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationMaryland

Posted 10 January 2012 - 09:27 AM

Heather,

From what you said, it sounds like your doctor is not opposed to a drug switch.  There are so few experts on CML and I'm sure he's just trying to follow procedures.  I know that doesn't give you warm fuzzies though.  Try to stay calm and when you see him next, if your numbers are still climbing, ask him again about switching drugs.  And if you're not happy with this doctor, shop around and find someone you trust.  Even if you have to drive further it's worth the piece of mind.

Rissa



#4 Sneezy12

Sneezy12

    Advanced Member

  • Members
  • PipPipPip
  • 67 posts
  • LocationMinnesota

Posted 10 January 2012 - 11:18 AM

What are the actual numbers? Frank



#5 HeatherZ

HeatherZ

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 January 2012 - 11:35 AM

PCR numbers

3/23/10 - 253.98 (number at dx)

10/11/10 - 4.03

2/10/11 - 1.96

6/13/11 - 2.93

10/5/11 - 6.44

Message was edited by: HeatherZ



#6 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 10 January 2012 - 11:47 AM

What numbers are these?  WBC's?

also - if you have been on Gleevec for 21 months (straight - no breaks) then absolutely need to have a drug switch. NOW, not when your Onc. feels like it. Dr. Cortes told me that patients on Gleevec need to show a fast response within 12 months (in his experience) in order to justify staying on Gleevec. If a patient does not get into MMR within that time, he switched them.

CML is very treatable. There are great TKI's out there including Gleevec - but with the choice you have, no need to pander to the so called guidelines when Gleevec is not getting you where you need to be. You want your counts to drop with zeroes all around them so progresson of the disease is greatly minimized.

My two cents.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#7 HeatherZ

HeatherZ

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 January 2012 - 12:26 PM

Sorry - they are PCR numbers.  I have had a few breaks with the G - a week in the beginning to help with side effects and then in May of 2011 I was without pills for a few weeks due to insurance issues.



#8 HeatherZ

HeatherZ

    New Member

  • Members
  • Pip
  • 0 posts

Posted 12 January 2012 - 08:27 AM

My waiting will end on Monday - I made my appt with the Onc for Monday 1/16.  I am trying very hard to not think about things until I see the doc. 



#9 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 12 January 2012 - 08:58 AM

Within the accuracy limitations of a PCR test, those numbers look pretty well flat since Oct 2010 so no need to panic, but unless they drop significantly on Monday then changing drugs would seem like the obvious course of action - particularly as you are suffering with G side effects anyway.  You could push for the muttaion test, but if the levels are much the same I'd probably just pick between the other two drugs based on which one fits your lifestyle / other health issues better.  Fingers crossed that you have a nice big drop anyway.

Phil



#10 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 12 January 2012 - 07:39 PM

It sounds like a stall.  This is what happened to me at 9 months on G (I had 3 flat PCRs in a row).  My onc said she thought we should switch drugs.  And I got a decent response on Sprycel.  When I was on S for almost a year, I got a considerable jump (but not a log).  This scared me, of course.  But my onc told me to wait.  Glad I did, because the next number had my first zero in it!  I would think that if you have 3 flat PCRs in a row, a change might be good.  As I learned from Trey, if the jump in PCR is under a log, it is likely too low for anything to show up on a mutation test.  It probably wouldn't hurt to wait for another PCR, but it also couldn't hurt to switch.  You should ask to do whatever gives you peace of mind.  The switch to S was hard on me, but I wasn't given a break between drugs.  The side effects do not seem to be any worse for me on S. 

Best of luck,

Tedsey



#11 HeatherZ

HeatherZ

    New Member

  • Members
  • Pip
  • 0 posts

Posted 16 January 2012 - 12:59 PM

And now ends.  PCR number went down to 2 and the Onc wants to stay the course with Gleevec. 



#12 Trey

Trey

    Advanced Member

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

Posted 16 January 2012 - 02:26 PM

Overall good news.  That is approximately a 2 log reduction from your diagnosis PCR, so is roughly equivalent to CCyR.  The last 4 PCRs are statistically flat.  You may see a downward trend start again after this plateau.  Plateaus are not that unusual, and usually shows that the TKI drug has killed off the lower level leukemia cells, and is having to work harder to kill off the higher level leukemic cells.  So you could either keep doing the same thing, increase dosage, or switch drugs again.  No wrong answer at this point.



#13 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 16 January 2012 - 09:02 PM

Heather,

Glad your numbers are headed back down, wishing you the best of continued luck with your treatment.

Pam






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users