30 replies to this topic

[r06ue1]

BCR-ABL1 Transcript Type Predicts Outcomes After Imatinib in CML

http://www.cancerthe...article/655106/

[Sandrea]

 

I have e13a2, unfortunately, and my results are not very good.

PCR in 18 month 0.49%, in 21 month - 0.68%  

[scuba]

I have e13a2, unfortunately, and my results are not very good.
PCR in 18 month 0.49%, in 21 month - 0.68%  

Sandrea,

Switch drugs. Don't waste  time "waiting" for Gleevec to work better. Sprycel would be a better choice. You probably don't even need full dose (i.e. 70 mg starting is preferred) and will likely be able to drop dose after only a few months when Sprycel knocks down your CML to below 0.1%. Sprycel works differently than both Gleevec and Tasigna in targeting the bcr-abl breakpoints. It will likely have better impact on the e13a2 transcript than Gleevec.

Good luck.

[Sandrea]

Thanks, scuba

but the change of drugs in our country is very difficult, delivering  imatinib is free (without payment), but second-generation drugs are very difficult to get, sometimes through law court. Some people wait for months and months, and it's unreal to buy - one  package costs almost my annual income. My hem doesn't  want to increase the dosage even, until she gets BMB results, and I can not change the doctor too...

[scuba]

Thanks, scuba

but the change of drugs in our country is very difficult, delivering  imatinib is free (without payment), but second-generation drugs are very difficult to get, sometimes through law court. Some people wait for months and months, and it's unreal to buy - one  package costs almost my annual income. My hem doesn't  want to increase the dosage even, until she gets BMB results, and I can not change the doctor too...

 

Health care in Russia is "single payer" government supplied - correct?

 

(the good news, however, is that your CML is below 1.0 % (PCR) and I assume your FISH (CML Cells counted under a microscope as a percentage) is zero. FISH = zero is more of a prognostication for long term survival than any other measure. Achieving that milestone (also called CCyR) is very important)

[thatguy]

What country and type of health system do you have there?

[Sandrea]

Health care in Russia is "single payer" government supplied - correct?

 

Probably, yes... I don't really understand in this question, earlier the medicine was free for everyone, now everyone has received the identical insurance policy. I have never paid anywhere for two years of my illness, but monitoring in our region is low - one PCR per year and one BMB per year. I decided myself to do PCR additionally every three months and i paid for it's about 1/5 of my monthly earnings.  About FISH - this wasn't done for me, only BMB, in April 2016 there was a CCyR, and now BMB was in April 2017 and i wait for the results.  Thanks for the good news, I hope I will not lose the CCyR.
 

[scuba]

Probably, yes... I don't really understand in this question, earlier the medicine was free for everyone, now everyone has received the identical insurance policy. I have never paid anywhere for two years of my illness, but monitoring in our region is low - one PCR per year and one BMB per year. I decided myself to do PCR additionally every three months and i paid for it's about 1/5 of my monthly earnings.  About FISH - this wasn't done for me, only BMB, in April 2016 there was a CCyR, and now BMB was in April 2017 and i wait for the results.  Thanks for the good news, I hope I will not lose the CCyR.

 

You answered my question.

Reaching CCyR is your most important milestone. Fish = zero is the same thing as CCyR. 

 

It's good that you are aware of testing procedures and follow-up on your own. Feel free to post your BMB results for people here to comment. 

[Trey]

I have some degree of doubt about the e13a2 (b2a2) being significantly more of a problem than the e14a2 (b3a2).  There are far too many variables to conclude that is a serious issue, although it could be a small factor in some if combined with other issues like drug uptake, cellular uptake, minor variations in the Philadelphia Chromosome.  Overall, most people with e13a2 do just as well as those with e14a2.  If the breakpoint was the only issue in drug response that would not be the case.

[kat73]

How do you find out which of these two you have?  I never had a bone marrow test done.  I don't see it mentioned anywhere in my paperwork.

[cmljax]

I think the only way to know is to have a bone marrow biopsy (BMB).  How did you ever get away without one? It is not worth the pain of having a BMB just to find out which breakpoint you have - like Trey said, it's not that big of a deal anyway.  My one and only BMB so far was AWFUL.  Save yourself the agony if you can Kat.

[kat73]

Yes, I have always considered myself lucky to have skipped that!  I don't know why one wasn't ordered.  It was 2009 and I was seen by a specialist with decades of experience, at a prestigious large hospital center.  I think my bloodwork was pretty straightforwardly pointing to uncomplicated CML or something.  I did have something called a Cytogenetics Karyotype Report (using peripheral blood) and it said 20 metaphases were counted and analyzed, and 3 were karyotyped with a banding level of up to 400.  Whatever all that means.  There was also a nice little photograph of my squiggly chromosome pairs.  I also remember asking if I had to have a BMB, and the doc paused and looked at the ceiling and answered, "I don't think so," as if he were going to wait and see or something.  There was never any more discussion about it.  When I switched oncs two years later and went to a brand new place, I asked again, and the new guy said no, I didn't need one.  So, although over the years I have been curious, I decided I wasn't all THAT curious and that I wouldn't be the one to bring it up   

[Sandrea]

BMB is not needed to know the breakpoint, usually it is indicated in the results of PCR analysis, for example, like this: "A b2a2 BCR-ABL1 fusion transcript coding for the 210kDa BCR-ABL1 fusion protein is detected by quantitative real-time RT-PCR"
http://community.lls...al/#entry174635

[gerry]

The article doesn't indicate that you will lose CCyR only that you turn into a turtle in regard to future milestones. But if you read a number of the threads, turtles can eventually get to MMR and even PCRU.

[gerry]

No influence of BCR-ABL1 transcript types e13a2 and e14a2 on long-term survival: results in 1494 patients with chronic myeloid leukemia treated with imatinib.

https://www.ncbi.nlm...pubmed/28083711

[Trey]

By the way, I have both e13a2 and e14a2, and my e13a2 went undetectable faster than my e14a2.  So my personal experience is that it was not an issue for me. 

[Melanie]

By the way, I have both e13a2 and e14a2, and my e13a2 went undetectable faster than my e14a2. So my personal experience is that it was not an issue for me.

[Melanie]

I also had both e13a2 and e14a2, and my e13a2 finally went undetectable about a year ago. Still waiting for the e14a2, but hoping it will disappear soon!

[Sandrea]

Thanks, Gerry and Trey, this article is a little calming.

I'm worried because my PCR is coming near 1 in almost 2 years of treatment, and 24% of myelocytes were in the last myelogram (the norm is up to 12%), it's more than I had at diagnosis even. I had relatively good conditions at the start (normal size of the spleen, no blasts in the blood and 1.6% in the bone marrow, few basophils-3%) and so I hoped that the response would be better and faster. Well, we have what we have.

[kat73]

Sandrea - I do see that notation in what few very old PCR reports I have - I just thought it was boiler plate language, especially since it mentioned both.  I just thought it was more gobbledy-gook about what the CML looks like to the test.  But now, I guess that it was telling me I have both.  How can you have two breakpoints??!!?  That sounds like a bad thing.  But I'll never be able to follow whether one disappears, as I never actually see my PCR reports - I have to rely on the onc's emailing me the magic number.  It's a computer thing, and yes, I've spoken to the institution's top IT administrator who assured me they'd fix it, but they haven't and it's going on years now.  They just say have the doc copy it and send it, but he refuses, as he has about a billion patients he'd have to do it for.