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PCR - 3month result

Hello everyone, I was diagnosed with cml (between CP & AP) in December 2016 (one week before Christmas to be exact) with an 11% blast. I'm currently doing very well on 600mg nilotinib daily with very minimal adverse effects; slight elevation of cholesterol, plus a mild case of cytopenia from adjuvant immunotherapy. By and by, I'm thankful every day to have my family's love and supports that I'm coping extremely well mentally. And like most people here, I try to understand this disease so that I don't fear it. Call it a coping mechanism if you will. But there is only so much one can get from reading medical journals and trial papers if one weren't already in the medical field so the question i'm about to post is so simple you might laugh! Hence, my question: is 3month PCR of 0.9% consider within the normal range of response for this timepoint? That said, i'm due for my next 6month PCR testing in one week time. My haematologist only commented that i'm trekking in the right direction in terms of treatment response. But being curious makes me so impatient! This waiting game is more suspenseful than a Vince Flynn's novel for me! So i would appreciate and welcome anyone's comment or experience that they can share with me on my posted question. Best Regards, Ellie.

 

 

 

 

Hello,
Dave here.

0.9% at three months is an excellent result. 

The QRT-PCR primer, which you can download from this website, states:

A number of international studies that have provided robust evidence that BCR-ABL1 transcripts below 10% by q-PCR, (or <35% Ph+ by cytogenetics) at 3 months and below 1% at 6 months, is predictive of event free survival (EFS) over the longer term. 4 (table 3,2c) 

http://www.cmlsupport.org.uk/sites/default/files/qrt-pcr-primer.pdf

The conventional threshold at 3 months is set at 10%, so you're well below it.

That said, these are reference values, there's plenty of people who did not get to those milestones in the expected time frames and are perfectly all right; the trend is more important than the single result.

Good luck for your next PCR!

Thank you, Dave.

I find the extra information you posted very helpful! It certainly helps with my preparation of questions for my clinician before my next appointment.

Thanks to you, i can now enjoy my long weekend here in down under!

Goodbye and best regards!

Ellie,

As Dave has already said... 0.9% is an excellent response at 3 months - you are well within the ELNet treatment recommendations and NCCN guidelines for 3 month response. Let us know how you get on.

Sandy

Thanks Sandy, it is always very reassuring to hear facts and figures from those who are going through and living with the same condition as i am.

On that note, I hope to have a great number to update this wonderful forum next month. Yes, it does take me that long to get my PCR result being a trial patient!

PS. Happy Queen's Birthday Holiday from the Land of the Opals!

Best Regards,
Ellie.

Hello Davewell & Sandy,

I hope both of you are doing well with your respective CML journey.

My own have been very good indeed since I penned my 1st post back in 2017 (knock on hard wood for it to stay true!).

My overall health and life's outlook relative to CML have not changed that dramatically since my diagnosis in Dec 2016.

Which I'm told is a good thing and I truly believe that.

With regards to my disease, last week my 18months PCR reading came at 0.005% Brc-Abl detected. Not too shabby, said my hematologist and myself, I couldn't word it better.

In another important aspect, I was so relieved for news because now I can go hard on training for my 2nd marathon, which is happening in Oct!

Well, that is it from me, so please continue to be well and stay well!

Best Regards,

 

These are the best kind of messages!

It is so good to hear back from people that are doing well, I believe it gives us all a (needed) boost of hope and good feelings!

Congrats for the marathon! I am not a runner myself but I know the feeling of getting back in control of your body after CML hits you.

Very good overall, keep us posted!

All the best,

Davide

Dear Ellie,

well done and thank you for updating us here on your progress. It is so important for us all to share our experiences with other diagnosed with CML- The main reason this site exists.

You have done so well and with a very low PCR - I know quite a few take to running and/or walking. Personally a marathon would be a step(s) too far me but I wish you the best for that  2nd(!) marathon- what an achievement only 18 months from diagnosis.

Sandy