12 replies to this topic

[Rissa]

I had my second bmb on Jan 11 and just got my results today.  I'm CCR!!  Yay!!!!

[jrsboo]

Congratulations!!!!!!!!!!!!!!!   Yipeeeee!!!!!!

Hugs,

Caroline

[SharaT]

Congrats! Domu mind me asking how long it took and on what drug? Can you stop the drugs now?

[Rissa]

Hi Shara,  I've been on gleevec for 9 months.  As with all the TKIs, you can't stop taking it.  It's life long.  I know you don't want to hear that.  But it is what it is.  My doctor did ask me if I wanted to join a clinical trial at Johns Hopkins where they would treat me with a combination of interferon and gleevec and then take me off everything.  I don't want to take the chance.  My kids are still young - 9 and 7 - and I'd like to be here for as long as I possibly can for them.  So no clinical trials for me unless I run out of options.

[SharaT]

Yeah i honestly don't blame you either! So you are already PH- after 9 months? I guess that is what CCR means right?

[cleocans]

Rissa congratulations!!  That is great news!  I am "patiently" waiting for the results of my 6 month PCR.

Kim

[Rissa]

I thought I replied to you earlier, but I don't see my response.  Anyway, my doc did say I had reached CCR and that the PH chromosome is undetectable. 

[GerryL]

Congratulations Rissa, next stop MMR.

[Pin]

Well done awesome news!

[hannibellemo]

Hi, Shara,

Welcome to the group! I know it is a bit overwhelming to you now but MDA will help you understand more about CML. A couple of things to point out. We don't become Ph-, that would actually not be a good thing as there are instances of people who have CML without the Philly chromosome and our TKIs do not work for them.

There is no definitive point where we can stop taking our TKI drugs. There may be trials going on where people whose leukemic cells have been undetectable for several years are attempting to see what will happen if they stop but no absolute point in time yet where someone says, "Ok, you're cured you can stop now." There is no Remission in CML, only Response to our TKIs - for now.

The point in your favor is your youth! So many advances have been made and there are more to be made and you will benefit from them all!

So do your mourning, take your pill and get on with your life. I'm not being flippant here, everyone of us, young or old, has mourned our perceived loses when we were first diagnosed - it is our ability to move on that makes the difference.

Pat

[GerryL]

Hi Shara,

There are different levels of Response to your TKI

Here is some info from Trey's Blog

Stages of CML "Response":

- Diagnosis: A zero response baseline from which to measure response to therapy

- Complete Hematological Response (CHR): The WBC and platelets return to normal ranges and the spleen shrinks back to normal size

- Complete Cytogenetic Response (CCR): Either a BMB or a FISH is negative, or 2 log reduction in PCR from diagnosis or lab baseline average

- Major Molecular Response (MMR): PCR shows a 3 log (1000-fold) reduction in leukemia from diagnosis levels or lab baseline average

- Complete Molecular Response (CMR): PCR is negative/undetectable (PCRU), so BCR-ABL transcripts are undetectable by PCR testing (leukemia levels too low to detect)

http://treyscml.blogspot.com/,

[pammartin]

Awesome!  Congratulations !!!!!!!

[Happycat]

Hooray and congrats to you! 

Traci