Hi I usually read n very rarely post. Anyway my hubby is seen at our local McMillan unit not a centre of excellence!! I usually post when I don't understand things!! Anyway my hubby has been on 400 of glivaac since 2006. Over a yr ago his counts went up, but we put it down to a virus. He's been doing well lately so his oncologist wanted to lower his dose of glee vac .anyway his bcr was running along at 0.2then 4wks ago he was told it had jumped to 0.23 now 4wks later it's jumped o 0.46 so his oncologist has told him he has to have a bone marrow biopsy. I'm scared as I'm worried that the glee vac is stopping working & the cancer cells are growing back? He has been on the drugs since 2006 & is 48 this march. I only ask advise as I know sandy is very knowledgeable & I know from previous posts he isn't being seen a a centre of excellence. Thankyou. Belinda.x
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Dear Belinda, from what you say I do not think you should be overly worried just yet.
It is good that your husband's clinician is being cautious and comparing the PCR results to bmb (cytogenetics)results. Taking a look in the marrow just to make sure nothing is going on there that might later show up in the blood is a sensible precaution especially given that he does not attend a centre of excellence.
You might ask the doctor where your husbands PCR results are tested. Hopefully this will be at one of the expert labs. If not then you should ask why not.
Given that your husbands results are still showing he has a molecular response i.e they are still below 0.0% then I would say this is further reason not to be too worried at this point.
The rises you outline are not large enough to justify calling them 'jumps'. The difference between the first 2 is not significant at all, and even the 3rd might only be a 'blip'... it is virtually the same as the previous result.
0.2% 0.23% 0.46%
The time to worry is when there is an obvious loss of one 'log'... ie.
from 0.02 to 0.1 then to 1.0 etc etc. if you see what I mean.
The difference between each of the above would be considered a significant rise - however, even in such a case showing an obvious loss of MR (molecular response)or even CCyr (1.5%) - treatment would then be changed to a 2nd Gen TKI with the likely retrieval of previous results... or even lower in most cases.
Please try not to be scared- although I know this is easier said than done and we all suffer from such fears when we see a change in our results- even when they are not significant.
Your husbands doctor is doing the right thing in checking his PCR results and not waiting to see if they rise further before acting.
The doctor might eventually suggest that your husband tries a 2nd generation TKI to see if his bcr/abl levels might be reduced further- pref. at least down to 0.1% = 3 log reduction (from diagnosis)
It does seem that some people respond better to 2nd or even 3rd generation TKIs (2nd gen nilotinib or dasatinib- or 3rd gen: bosutinib or ponatinib)and see their bcr/abl levels reduce further down to
0.01% or 4 log reduction (MR4)
0.003% or 4.5 log reduction (MR4.5)
0.001% or 5 log reduction (MR5)
Please ask again if you do not understand the above.
Sandy
Belinda, I am glad I can help. I am only one of many individuals who try keep learning about CML and everything surrounding it in order to share that knowledge with others. This is how I kept myself alive- with the help of other patient/carer run online groups. If it wasn't for one individual in particular I would not have learned about the STI571/imatinib phase ll trials in the US, and would certainly not have been able to access TKI therapy- a lifesaver for me.
Do let us know how things turn out- there are many members of this forum who do not ever post, but do find help and support through reading about the experiences of others who are willing to share.
Sandy