8 replies to this topic

[Melanie]

I see my Onc tomorrow but was faxed my fish results today. It's a little different than previous ones, so I'm not sure I'm reading it right and would like help. It says:

Fish: BCR/ABL (Philadelphia) - nuc ish (ABL1x3), (BCRx3), (ABL1 con BCRx2)  (11/500)  ***Low level BCR/ABL1 Dual Fusion***

So, I'm reading it as saying I have about 2% of the BCR/ABL.  Could this be right?  If so, it's the first sign of response I've had.  This is the longest run of being able to stay on a TKI drug, 72 days at either 1/2 or 3/4 dose of Tasigna, although I've had to also do Neupogen shots to keep my ANC up. So if any of you could read this and let me know...I would so appreciate it!  Blessings to all, Melanie

[CallMeLucky]

Yes you are reading it correctly, this is a very good result.  Your FISH is 2.2% which is hovering around the false positive limit so for all practical purposes this should be classified as a Complete Cytogenetic Response (CCyR).  This is the most important milestone.  Please confirm with your doctor, but I think this very good, particularly if you had to take reduced dosage to get there.

Congratulations...

[Melanie]

Thank you Lucky!  Wow, I'm so excited!  Of course I will confirm with my Onc tomorrow which happens to be my 1 year annv of dx. It's been such a long year, not being able to stay on a TKI drug, fighting severe low WBC & ANC, and resisting advice to get a BMT.  Finally, my onc agreed to the lower dose approach (I think to just placate me) and then last week agreed to the fish test to see if there was any response. Really...CCyR?  I was just praying for a lower % than my last one back in August when I was at 68%.  I literally hadn't been on any TKI till I started the 1/2 dose in the last of Feb. Thank you for responding so quickly!

Melanie

[PhilB]

Congratulations Melanie.  That's a really excellent result and pretty overwhelming evidence that reduced dose is almost certainly the best option in your particular case  If your Onc says he wants to increase the dosage after those results bite him. Definitely happy little dance time.

[LivingWellWithCML]

And this is a very sensitive version of the FISH test they are using for you, because they are evaluating a 500-cell sample instead of a 200-cell sample.  Odds are that you'd be 0% FISH with many of the other testing methods, so you're doing great.  Congratulations!

[NotJack?]

Hey Melanie,

Wonderful numbers!  Time to either switch to PCR or both PCR/Fish in 3 months.  Some oncs haven't stepped up the testing to begin the PCR earlier to compensate for the quicker response times these days. (Mine included).  Enjoy, take in a play, concert, weekend away, or nice dinner--don't forget to celebrate!!!  Again, great news,  Jack

[Melanie]

Thanks Phill!  I'm dancing all the way to the Dr office.   I just pray that there wasn't something more in the test that I didn't see.  My plan is to stay on my 3/4 dosage and try to get off the neupogen shots, since I have some wiggle room. Of course we'll see if Dr's plan agrees.  My platelets have been low (55) but this week they went to 69, so hopefully they're on the rebound too.  Thanks again! Melanie

[Melanie]

Thanks Dan!  I was wondering if the 500 cell test meant it was more sensitive.  I've only had the 200 one before, so this was new to me. Yea! Blessings to you all!  Melanie

[Melanie]

Thanks Jack! Definitely want to do the PCR test next. I haven't had one. I asked my onc to do one just so we would have a baseline for comparison and he said when and if we got to the PCR test, he would just use "normal" as a baseline.  Not sure what that means, but looks like now I'll find out.  We are definitely going to celebrate...we have cancelled so many life celebrations due to my low counts, that now I feel like we can actually plan something. We'll start with Mother's Day! Blessings to all! Melanie