6 replies to this topic

[CML2012]

On May 3, 2016 I made the following post titled "Numbers are going up, need advice"

 

If you look at my signature it contains my complete history. I was PCRU for 9 months and now my numbers are on the rise. Any and all advice would be greatly appreciated. The only changes in my life are I have started taking an extremely mild diuretic for Ménière's disease and I have been dealing with a lot of very stressful events in my life. I am almost 46 years old and I am the mother of two teenage children. 

 

Several responded "retest quickly" and I did that - as you can see in my updated signature.

 

Trey said "This is not so unusual.  Very few have a PCR history which does not have some ups and downs.  It could just be testing variations." - so I stopped worrying :-)

 

Buzzm1 said "there should not be any interference with the Dyazide, the mild diuretic"

 

Well today I met with my oncologist and she wants to switch my oral chemo from Sprycel to Tasigna.  I was ok with the 0.12% only going to 0.19% especially after Trey's response to my last post, but she said she is not happy with my numbers. I told her I needed to think about this and do some research.  So here I am!!!  You guys are my research.  What should I do...wait it out?  or change?  STRESSING.....

[CML2012]

I do not know if the following will make any sense or not but my lab report says e13a2 not detected, e14a2 0.19% and minor e1a2.  Also by my calculations this is a 2 log increase since December 2015 (see numbers in my signature)....Can anyone explain this or let me know if my calculations are correct?

 

I have already had a mutation test and the results were the following:

No BCR-ABL1 fusion gene transcript was detected in this patient, thus the mutation analysis of the BCR-ABL1 kinase domain could not be performed.  .....  Can anyone explain this?

 

I am planning on getting a second opinion so if anyone can tell me the name of a great CML oncologist here in North Carolina (I live in Charlotte) that would also be great!!??

[Trey]

Your PCR was said to be PCRU during the end of 2015.  It seems likely to me that your lab has a -4 log cut-off for PCRU which I believe does not measure low enough.  You were probably just a hair under .01% when the lab called it PCRU.  So that would not be a 2 log increase as you suggested -- maybe just over 1 log.  Still roughly on the edge of MMR. 

 

You only have the e14a2 (b3a2) breakpoint, which is the most common one. 

 

The mutation test could not be performed because it does not work below CCyR.  You are well below CCyR.  "Not found" is equivalent to BMB or FISH being negative.  If you had a kinase mutation the PCR would rise much more quickly, so I would forget about that.

 

Overall you seem to be plateaued or stalled out near MMR after being PCRU for about 6 months.  I assume the lab used has always been the same one.  Hovering near MMR is not necessarily "bad" unless the loss of response continues.  But it is understandable that your Onc would like to have you switch drugs.  I might be inclined to try Tasigna if I were in this situation. 

 

I do not have a recommendation for an Onc in Charlotte.  But I also do not know what another one would do for you.  The only option would be a drug change, and you can do that now if you want.  If you do not want to switch, but the current Onc insists, you could change Oncs if it means that much to stay with Sprycel.  I do not think there is a wrong answer as long as you do not lose CCyR, so it is just a decision you need to make to switch or not.

[CML2012]

My lab actually reports 3 decimal places. The report I am looking at has December at 0.000%, April at 0.122% and June 0.190% so will that make a difference in your response? Also do you think there is any problem with waiting a few months and having another BCR/ABL test before switching?

[Trey]

No difference in my response.  I don't think waiting for another PCR cycle is a problem, but I also think you have enough trend info to make a decision now if you want.  It just looks like a change is needed, even if not urgent.

[Buzzm1]

CML2012, sorry to hear again about your increasing PCR.  Others who have experienced similar resistance to first and second-line TKIs seem to eventually find success with 300mg of Bosulif (possibly 200mg initially to test your tolerance).  Chriskuo might be a good person to talk to: I think he has been on Bosulif the longest.  I think Mbrown is also on Bosulif.  Perhaps they can advise you.  

 

Do a search on Bosulif http://community.lls...h&fromMainBar=1

[CML2012]

Ok I was undetectable for 9 months then it was 0.04%, 0.122%, 0.19%. Today I got my last result 0.176% so slightly down. At least I am still not going up. I did not switch TKIs. I have been dealing with a lot of stress so maybe that is why I had the slight jump. We are just going to watch this for a while.