New Member
Posted 08 July 2015 - 04:58 PM
Received results from my oncologist today, and trying to understand just what it means...never seen "IS" on a result before....
Positive: BCR-ABL fusion (e13a2/e14a2) to ABL1 transcript. is detected at 0.2213% on IS.
He seemed to think it was okay and to continue with 400mg of Gleevec, but I'm just trying to get a better understanding. Thanks!!!
Advanced Member
Posted 08 July 2015 - 08:14 PM
See Below:
http://www.whereareyouontheis.com/
IS = International Scale
e13a2 and e14a2 are common detected proteins (the result of bcr-abl transcription).
All this means is that you are getting close to Major Molecular Remission (MMR - assuming your levels are dropping from your last test).
You are 0.22% on the International scale (last two decimal places are meaningless). 0.10% is defined as MMR.
Trey will likely respond with a more detailed answer. He's good at that.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Advanced Member
Posted 08 July 2015 - 08:31 PM
Since this is your first post it would help to know how long since you were diagnosed. Measuring response acceptability is generally a function of time.
New Member
Posted 09 July 2015 - 11:11 AM
I was diagnosed in March 2012(Woke up with blurred vision with my right eye and my eye doctor could tell something wasn't right..saw there was blood in my eye and there were white spots in the blood). Ordered a blood test and next day got "the call" saying I had 265k white blood cells and more than likely it was a form of leukemia but if I was going to have one type "this was the one I wanted to have". Went in next day and talked to my oncologist for about half an hour and we did a bone marrow biopsy. Started gleevec two weeks later at 400mg 7 days a week. Within 2 weeks, by WBC count went to 6000. He cut me back to 5 days a week because he was worried about my WBC count going too low. Was "undetectable" by December 2012. Doctor then cut me back to 400mg of gleevec on M, T, Thursday, and Fridays...Wednesdays, Saturdays, and Sundays had off. Was "undetectable" all through 2013 and 2014...decided in Septmber 2014 to cut back to 400mg 3 days a week(M,W,F). In December had a PCR and it showed .0069 but wasn't "IS". First time I wasn't "undetectable" and then the recent one I got back yesterday. He doesn't seem concerned, and said we'll do the next one first week of September. Never had an side effects, and the CML has become an afterthought. Just the first time I had ever seen it in "IS" form. The only downside of CML was that it affected my vision....because of the blood in my eyes, both my retinas became detached and I was "legally blind" for about 4 months in 2012. Vision in my right eye is permanently damaged(I just have a stronger contact prescription" and my left eye is better than it's ever been. So far taking Gleevec 3 days a week is fine, but he said if I have a "sub-optimal response" will increase days or dosage
Advanced Member
Posted 09 July 2015 - 11:30 AM
According to your post - I read that you became undetectable after 8 months on Gleevec. And then started cutting back dose to manage blood counts and as you decreased dosing you became detectable and now you are at 0.22%. That is significant. You are no longer in major molecular remission (MMR < 0.1% IS).
You may not be taking enough Gleevec or are losing response. Your doctor should be concerned with your trend and dose timing.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
New Member
Posted 09 July 2015 - 11:36 AM
Yeah....I'm at 3 days a week and haven't taken it for 7 days a week since my initial diagnosis. We'll see what happens come my next PCR
Advanced Member
Posted 09 July 2015 - 02:24 PM
You need to take more drug. The current dosing schedule is not adequate.
New Member
Posted 09 July 2015 - 02:33 PM
Yeah that's what I've been thinking over the last 24 hours....hoping for a good result the next PCR. If I have to go back to M, T, W, F or everyday as most folks do, it won't be a problem as I have always tolerated Gleevec well. I'm 35 years old and really just want to keep moving forward with life.
Advanced Member
Posted 09 July 2015 - 03:25 PM
Yeah that's what I've been thinking over the last 24 hours....hoping for a good result the next PCR. If I have to go back to M, T, W, F or everyday as most folks do, it won't be a problem as I have always tolerated Gleevec well. I'm 35 years old and really just want to keep moving forward with life.
You should take Gleevec every day and get your PCR down like it was before. Only when you are PCRU for a period of time could you decide to try and reduce dose or stop like you were doing and see if it works.
This is important - you have lost major molecular remission (> 0.1% IS). That is a significant marker. Experiments of the type you are doing (every other day or less) is fine when you are below 0.1% - not much worry there. But you now have evidence of a rising PCR above MMR due to not taking enough drug. You run the risk of significant disease progression.
You mention you tolerate Gleevec well - that is wonderful - so take it. Every day. And you will not have to be concerned about CML (as much) and what day is what.
To quote Trey, "The current dosing schedule is not adequate". And you did have a dosing schedule in the beginning that worked well for you. Go back to it.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Advanced Member
Posted 09 July 2015 - 03:51 PM
You should take Gleevec every day and get your PCR down like it was before. Only when you are PCRU for a period of time could you decide to try and reduce dose or stop like you were doing and see if it works.
This is important - you have lost major molecular remission (> 0.1% IS). That is a significant marker. Experiments of the type you are doing (every other day or less) is fine when you are below 0.1% - not much worry there. But you now have evidence of a rising PCR above MMR due to not taking enough drug. You run the risk of significant disease progression.
You mention you tolerate Gleevec well - that is wonderful - so take it. Every day. And you will not have to be concerned about CML (as much) and what day is what.
To quote Trey, "The current dosing schedule is not adequate". And you did have a dosing schedule in the beginning that worked well for you. Go back to it.
I agree with both Trey and Scuba. Waiting until your next PCR test in September should not be an option at this point.
Advanced Member
Posted 09 July 2015 - 05:15 PM
Did your onc tell you to cut the Gleevec back to 3 days per week?
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
New Member
Posted 09 July 2015 - 05:54 PM
Have always followed his orders. First two weeks on initial diagnosis I started at 7 days a week. Then went to 5 days a week(M-F) for 2 months after diagnosis. From there was on 4 days from middle of July 2012 to September 2014. That's when he said let's go M, W, F. Was not my decision..have never considered stopping Gleevec or even suggesting it. Have always been on 400mg...maybe it's time to go back to 4-5 days a week or go 7 days a week on a lower dose.
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