well, i've just got my 6 month PCR: 6.83% (i was 14.41% at 3 months) IS. My numbers are going in the right direction and i must be in MCyR. I have 3 appointments in august to decide what to do with my treatment. I'm not afraid as i was in the past (recent past) because maybe i'm just a slow responder but glivec seems to act in my cml.
Cheers guy! enjoy your summer!
Thanks, thomas! I don't know if i'm doing great, but i'm going somewhere safer. Maybe i'm lagging 3 months behind or maybe i have to change something in my treatment, but i'm ok and without side effects (just sensible skin and low platelets). life goes on :D
This can only be encouraging news Lucas.... although it is a little slower than the 'optimal' response, this result shows that you have (treatment) responsive disease.
I may be that you would respond quicker with one of the 2Gen TKIs -if any of them are available to you- but it is good news. Exactly how low are your platelets?
I am sure you have probably read this article but it is worth reading again I think. The 'take home message' from this research seems to confirm what a lot of us think.... that slower responses can still achieve optimal outcomes.
Prognosis for patients with CML and >10% BCR-ABL1 after 3 months of imatinib depends on the rate of BCR-ABL1 decline
Key Points
* Among patients with >10% BCR-ABL1 at 3 months the poorest risk group can be distinguished by the rate of BCR-ABL1 decline from baseline.
* Patients with BCR-ABL1 values on a constant downward trajectory may rapidly reach the level considered optimal with additional follow up.
Abstract
In CML patients, a BCR-ABL1 value >10% at 3 months of therapy is statistically associated with poorer outcome, yet many of these patients still achieve satisfactory outcomes.
We investigated 528 first-line imatinib-treated patients to determine whether patients with the poorest outcome can be better discriminated at 3 months.
All outcomes were significantly superior for the 410 patients with BCR-ABL1 ≤10% at 3 months, P<.001.
However, the poorest outcomes among the 95 evaluable patients with BCR-ABL1 >10% at 3 months were identified by the rate of BCR-ABL1 decline from baseline; assessed by estimating the number of days over which BCR-ABL1 halved.
Patients with BCR-ABL1 halving time less than 76 days (n=74) had significantly superior outcomes compared to patients whose BCR-ABL1 values did not halve by 76 days (n=21); 4 year overall survival 95% versus 58%, P=.0002; progression-free survival 92% versus 63%, P=.008; failure-free survival 59% versus 6%, P<.0001; and MMR 54% versus 5%, P=.008. By multivariate analysis, the halving time was an independent predictor of outcome in this poor risk group.
Our study has highlighted that the rate of BCR-ABL1 decline may be a critical prognostic discriminator of the patients with very poor outcome among those >10% at 3 months.
Copyright © 2014 American Society of Hematology
http://bloodjournal.hematologylibrary.org/content/early/2014/05/23/blood...
Sandy
Thanks, sandy.
I know this article. it's very nice and encouraging. i know that i don't have the best response, but my numbers are going down. I remember an article from dr. cortes where he said that at least 30-45% of the patients didn't met the 10% at 3 months but most of them do well on long term and the "cut point" of this is a MCyR at 6 months, what i presume i have (less than 10% = MCyR). I also know that the guidelines are always changing and if we were in 2010, my response would be optimal. In august i'll have an appointment with one of the bests doctors in my country and then i'll know what is the next step: continue with the same dose, up my dose or change to a second generation TKI. I'm much more confident now. I read a lot of stories in this forum early in my cml and there are a lot of cases like mine: slower responders. many of then made it to MMR, like nigel, harvey and many others - i remember one guy who was with 5% at 9 months but made it to mmr.
My platelets are around 80-85K. it's a grade 1 issue. nothing to worry much with my dose. maybe that's a problem with a higher dose or with a second generation tki. In Brazil, glivec (imatinib) is the first line treatment but we also have nilotinib and dasatinib as second line treatments. i think i can obtain a second generation tki via my insurance. let's wait and join life. :)
Cheers.
Dear Lucas,
Am happy your pcr numbers are going down. Am wondering what McyR numbers are supposed to be. I am telling myself that if our numbers rise, plateau or whatever, there are other meds.
I was hoping to hit MMR in 6 mos but didn't.
So am trying to de-stress!!! ha ha ha.
Trying to eat right also.
I know lots of people are rooting for us and that's is really special.
Ginger
Hi Lucas,
Thank you for the info. Is the mcyr the amount of Ph+ chromosomes? I didn't have a bone marrow test, just blood work to get my pcr number.
I am on Sprycel and still learning the milestones and acronyms. When are we likely to hit MMR? My onc always tells me not to worry or think so much. Hard not to.
Am searching for the best foods, etc to help us.
Take care and keep moving!!!
Ginger
hi sandy
i was very concerned after my 6 months pcr which was 1.4 , doc told me that it should be below 1 bcoz at 3 months it was 5.876, but i am relieved bcoz after 7month it is 0.781.
thank's to god
akash
Dear Sandy,
Thank you for your information. It really helps me with clarity.
I was 100% at diagnosis; 20% IS a month later; .385% IS at 3 mos and .365%IS at 6 mos. I thought Sprycel worked faster than Glivec and was disappointed as was my onc.
I will be tested again in 2 mos and wonder why the numbers didn't drop. Wonder if my diet and stress are affecting the results. I know that I must get busy with something other than CML. I think I know now that I might not reach MMR for a long time. I heard that from Lucas.
My doctor never mentioned if I had a cytogenetic response. I hope I have.
I figured out on my own that I had a CHR by 3 mos.
Thank you for any assistance.
Ginger
