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Undetectable!

I had the result of my most recent blood test yesterday - undetectable!  After 6 years, I never thought it would happen, especially since the test before had been a little bit up on previous ones.  And I have been on a reduced dose of 300mg of imatinib for the last 9 months.

Of course, it may just be a blip, but it's the right sort of blip...

Hi Olivia

We were dx about the same time (Sept 2009?) and both on Imatinib. Had to write to congratulate you on the latest result - what a wonderful early Christmas pressie. Great news - and on a lower dose as well. So happy for you,

Best

Chrissie

Thanks Chrissie - yes, I was dx in Oct 2009.  

I've been following your tribulations, and hope that your arm is recovering, also that you may manage to keep a low PCR on whatever dosage the docs advise.  Hang in there!

Olivia

Wow! Congratulations.

I also got an undetectable on my last test, and like you I am prepared that it's just a blip or a test on a degraded sample etc., but as you say it's the right sort of blip. I'm just dubious that I can go from 0.02 to undetectable in 3 months. But you never know ... 

I've got a clinic appointment this afternoon to discuss it, which I've been looking forward to.

David 

Fantastic news olivia I'm thrilled for u xx

Hope it went well for you, David, let us know how you got on!

Well, it was based off 124000 essays - so a decent basis for the sample, so it was not as I had feared some weird freak result off a crappy sample.

I just hope I can follow it up with another one of the same from today's sample. 

I can hardly believe it was true. Had I hit MR4 I would have been happy (I was nearly there), but to get to an MR5 I am over the moon. Totally prepared to bump back up a bit but if I can hold an MR4+ for a while I'll be very happy.

David.

hi, David,

I've read your previous post knowing that you also had some blip along the way.  My latest result (12 months) showing an increase from 0.25% to 0.48%.  I was hoping a result to show MMR but so disappointed with that.  Can you tell me a bit more, like when was the blip occurred and how long did it take to come down again?

Thanks

William

David, such good news for you! and such a good sample that it is very likely to be confirmed- at least from what Prof.Foroni explained to us all at the conf. last Saturday. I looked for you but disappointingly did not see you there- I assume you were in the audience?

Best wishes for your next result.

Sandy

Dear Olivia,

Many congratulations on your PCR result. Wonderful news for you. I hope the reduced dose means you have lessened side effects. Let's hope the next one proves this was not a blip.

Sandy

 

William,

The result depends on the number of transcripts that were tested in that particular sample, if you had a good amount of normal control gene (eg. at least 10,000 ABL, BCR or whichever gene your lab uses as a control) the result is reliable. However, it may be that the sample was not 'good' so the result it generated may be a 'blip' or unreliable. As it stand there is not a significant difference between the two results- but I understand your disappointment that you did not hit MMR this time. Nevertheless, you may well see a lower result next time. Hopefully you will continue to see more zeros but sometimes it take a little longer that the 'ideal'.

Sandy

hi, Sandy,

Thanks for your kind words.  My doc said the same, but waiting for the next result (in two more months)  sometimes can be a torture.  Anyway, I try not to think too much.   

Many thanks,

William

Hi Sandy,

Yes, I was there but didn't manage to catch you either. I was looking out for you at the breaks, but we must have just missed each other. I had to dash off a little early as we had an evening appointment we had to get to so when things overran I had to run before the second breakout session.

David.

Hi William,

Looking back, here's some of my key figures for the first two years. There was quite a bit of yo-yo-ing in the first 12 months.

  • Diagnosis: 321%
  • 5m: 76%
  • 6m: 3.9%
  • 8m: 0.333%
  • 10m: 1.04%
  • 12m: 0.13%
  • 15m: 0.369%
  • 24m: 0.06%

According to ELNet guidelines, I was in "warning" at 3m, and still there at 6 months and even 12 months. So, not optimal. Then things got worse at 15m! 

But here I am, at MR5. Maybe I won't hold that forever, and it took me a little while to get to MMR, but here I am with an MR5 response. So sometimes the tortoise does beat the hare!

 

David.

Oh well, back up to 0.02% - from that "undetectable" that I was rather dubious about. 

Still, a decent enough number and disregarding that undetectable PCR result, 0.02% is a level I've held for quite a while now.

Hi David.... well this may be disappointing - undetectable is such a desirable word ;o) - but you are almost at MR4 so given all the variables involved in molecular testing if I were you I would take that 'undetectable' result as a sign for the future.

Sandy 

My 'undetectable' turned out  be a blip after all - my latest result is 0.0048, which is still OK by me!  I can however hope for more blips...

Olivia

Hi, David,

Thanks for sharing your experience with us.  It gives me hope and I feel a lot better now.  My circumstances are quite similar to yours (similar high starting BCR, similar age, also on Glivec, and had blips around 12 months mark). Please keep us informed about how you latest result under Glivec.

Thanks and wish everyone a great year!

William