Hi all,
After being diagnosed in September I’ve just had the results of my first PCR which was a very disappointing 55%. I’ve been switched from imatinib to nilotinib and I’m hoping this does the trick.
After just getting to grips with everything I can’t help but feel I’m back to square one, if not worse, and I’ve really been knocked for six.
Has anyone else had an experience with a poor first PCR?
Thanks,
Andrew
Hi Andrew,
You are correct in that 55% isn't a reassuring response. But as I understand it, the PCR result isn't the most important test to look at when you are beginning your treatment. The first milestone is complete hematological response (CHR). How are your blood counts? Has your white count come down into the normal range? What about your platelet count?
The next goal of treatment is a reduction in the number of leukemic cells. The FISH test is used to determine that level of response. Has your doctor had that test done? If so, do you know what the results were?
I just watched a video interview with Dr. Talpaz from 2013 and his preference is to start with nilotinib or dasatinib. If I remember correctly, he said that around 25% of newly diagnosed people don't respond optimally to imatinib.
Hopefully you've had some positive response to imatinib and your switch to nilotinib will accelerate your journey to a lower PCR result!
Kirk
Hi Andrew I am sorry you didn’t get the news you were hoping for today. Like Kirk said I hope that your CBC results show some positive movements on your white and red blood counts.
My husband was diagnosed at the same time as you and has responded really well on dasatinib. it’s great now that there are so many second generation TKIs to try. So I really hope nilotinib will be the right one for you.
Are you taking Curcumin? It’s a great help with inflammation. I am sure Scuba and others will suggest some other supplements to help augment the TKI.
Keep faith. Best Louise
Hi Andrew and welcome to this forum.
Yes there are many of us who did not have optimal PCR results when first on TKi treatment. I know this first PCR result must be disappointing for you, however your doctor is correct in switching your treatment to a 2G (second generation) TKI at this point. A significant minority of patients do not achieve the optimal responses within the first 3 months (around 40%).
NCCN Guidelines (2028) and European Leukaemia Net recommendations (2013) consider a PCR result that is less than 10% BCR-ABL at 3 months post start of TKI therapy as an optimal response for chronic phase CML. NCCN currently suggest that patients are switched to another EKI at this point.
In most cased a switch to a 2G TKI (like nilotinib) does the trick and you will more than likely see your next PCR result reflect this. There is a certain amount of holding your nerve when embarking on this journey, so please do not allow this disappointing result phase you. Nilotinib is a very effective drug and provided you can adhere to the daily regime of fasting etc. I am sure you will be able to update us with good news next time. Your are certainly not back to square one.
Sandy
Hi Andrew,
I had exactly your experience back in December 2014.
I'd been dxd in September 2014. I was just starting to think I was 'getting to grips' with having CML. I had a very positive consultant, my spleen, which had been enormous, had shrunk back down, and I felt healthy and pretty optimistic.
Then, a few days after being told all my regular bloods were normal, I got a phone call from my consultant calling me in to see him the next day. My first PCR had come in at 57% and it really knocked my confidence. I was suddenly scared again. Imatinib had failed me and wasn't the wonderdrug I'd been led to believe. Things started to look very uncertain again.
It took me a few weeks of reading much more around the subject, including a number of studies, and also this forum (thanks everyone!) to realise all was not lost.
When I read of the difficulties and experiences with CML that people have had, people who lived to tell those tales, I realised you never can tell what's going to happen.
I'm very lucky that Nilotinib has worked really well for me. Here I am 3 years later, feeling pretty healthy and in mr4.5.
I do totally understand where you are Andrew. I believe there a now 5 approved TKIs and between them they help the majority of people who take them. Of course, there are no guarantees in life, but I'd say there's a pretty good chance you'll find a TKI that works for you and get to to grips with your situation once more. Good luck.
Thank you, everyone, for all your positive responses. I know it's probably a cliche to say but finding this forum has been such a huge boost for me and I can't thank everyone enough.
In terms of my blood counts, everything has come down to the normal range, I did complete forgot to ask for my counts at my last appointment but my consultant did mention that I was not losing ground. I'm just trying to stay positive and hoping that Nilotinib can do the trick.
I hope I'm able to report some encouraging news in the next few weeks about my response and once again thank you.
Andrew
We know the feeling as well. My husband was dianosed in September 2017 and he was at 90% and at 2 months he was 34% and at 3 months he was 36%. Very disappointing and it was talked about moving from Imatinib to something else. Because of an initial big drop they decided to wait and his 4 month test was 6.06%. Everyone responds differently and it was good that you moved to a different one, it happens all the time. No, you didn't start back at zero, you just continued on your jouney towards 0%! Hang in there. My husbands blood results were all over the place but the last 6 weeks they have been in the normal range.
All the best,
Michelle
