24 replies to this topic

[Tedsey]

I would love to eventually go off tasigna long enough to have my last little one. ......uhhhg. sounds selfish I know. .and maybe a little unreasonable? I'm just not ready to close that door yet. I wonder if 9 months is to long for a tki break?

I hear you.  I gave up on another child.  I have only been PCR negative twice and it took 5 years (I was told I have to be consistently PCRU for at least 2 years--well, I have been wating...it never came and now it is too late).  I was advised not to even try to get pregnant.  If you only have one child, and your numbers are decent, seriously consider.  Although I have two kids, it still makes me very sad.  If I were way younger and only had 1 kid, I would probably try under strict observation.  It can be done with no harm to baby or mom.  Nevertheless, I feel blessed with the two kids I have.

 

Best of luck.

[gerry]

Not a bad idea.

 

I want to try to get my pcr down a bit more before considering it though.

 

My results:

 

                         International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

09.12.14     0.01%                      0.02%

12.11.14     X.XX%                      0.03%

Agreed Teddy,

When you get to PCRU, you could start a conversation, fingers crossed the PCRU remains steady and you can then lower the dosage.

[TeddyB]

Agreed Teddy,

When you get to PCRU, you could start a conversation, fingers crossed the PCRU remains steady and you can then lower the dosage.

 

If i get to PCRU

Coming up on 3 years on Gleevec now. (April)

[ChrisC]

Hi all,

 

I offer my support to all of us in our adventure with our TKIs, and fulfillment of our precious desires re having families, and with our own quality of life issues. Please stay informed and be strong in presenting your case to yourself and to your onc and to your families.

 

I was fortunate to reach PCRU at 11 months post dx. Having read here of the studies in France, etc., re stopping TKIs once stable PCRU maintained  2+ years, I stayed at full dose Sprycel (100mg) post PCRU for two years, and kept my onc informed of my desire to try stopping Sprycel after 2 years PCRU. While he humored me up until the end of two years PCRU, he did finally say he couldn't approve my stopping Sprycel and he referred me to a specialist at Stanford, who fortunately agreed that I indeed met the best-case-scenario for stopping.

 

That was in Sept. 2011, and all my tests since stopping Sprycel then still show CML is undetectable.

 

My onc moved away recently and I now have a new onc who I first met with a couple of months ago. She doesn't approve of stopping TKIs, and says so to my face. See, it never stops, does it? Anyway, life goes on, as they say.

 

My point is that it seems best to me to be self referral, not only going by the outside prompts and opinions of others. Gather info as much as you can, check your test results, discuss things here and with those closest to you who understand what is involved, and make your own decisions.

 

If you aren't comfortable stopping your TKI, fine, enjoy your life, and accept the side effects, you are doing fine! If you want to reduce the dose, which my onc and specialist wouldn't even consider, it is your decision. And if you want to try stopping your TKI — you decide whether waiting two years at undetectable, or less if you are scuba   — the studies are very supportive of this, as they seem to show repeatedly that if you need to restart your TKI if your BCR-ABL level goes up above .1 IS and stays there, that you will soon return to a great response and will do very well.

 

To me it is obvious that we are individually much more than "someone having CML" and that we can know within ourself what is right for us. There are many responses to treatment, and these treatments are evolving. We need to know what the studies are showing, and if something strikes us as appropriate, to pursue it. If staying the course is our safety net, then we are right at home with it. All power and happiness to us!

 

Wishing us all the best quality of life, and happiness in all our endeavors,

 

ChrisC

[gerry]

HI Chris,

That's a pretty funny story about your new doc. Interesting to see if you continue to be PCRU and the years progress whether she changes attitude.