Hallo,
After being so pleased to hear that Rio's last results came back ph-ve, I was rocked today to hear that the pcr/abl has worsened from 0.23(ish) in May to 0.9(ish) in August. His consultant is of the opinion that the response has probably plateaued. She is going to do another test in 2 weeks time, then results seem to take about 4 weeks, so we wont hear for about 6 weeks. Decisions about whether to do a BMT are still on hold too - it seems that the recommended treatments for cml are being rewritten currently, so our Consultant is going to email the author of this report which is due out soon (someone in London) to see what she would recommend for a 14yr old with plateauing response to imatinib and a 90% matched donor. Does anyone know anything about these new recommendations?
Rio was hoping for something more definite and is feeling the strain of living with uncertainty - I dont pass on my worries to him, but he is feeling it for himself now. He is adamant that he wants a BMT and to be free from cml.
Any tips on how to stop myself from going round the bend without resorting to too much alcohol????
Kestrel
You are here
Ups and downs
Kestrel
I was sorry to learn that Rio's recent PCR tests have indicated an increase. A second test should hopefully confirm whether this is the case or whether it was just a 'fluke' result which can occur.
I was just trying to recall how long Rio has been on Glivec. It must be 12 months or so. Has your consultant discussed the option of other drug therapy?
When we were faced with the decision of BMT vs drug therapy we were referred to Professor Irene Roberts, Professor of Paediatrics Haematology at St Marys Hospital, London. At the time, April 2005, she was leading the European BMT protocol and had been involved in the early studies of Glivec in childhood CML. Not too sure whether this is still the case.
I am sure that you will keep focused for Rio. Wishing you all the best.
Parmjit
Parmjit
Kestrel, Just wanted to let you know that Im thinking about you - you must be going out of your mind!
There is no easy way to wait for results, its so tough.
What I will say is that on several occasions Aarons PCR showed a weird increase and then the next time it was back to where is should be. Aaron's Consultant never takes the results of just one 1 pcr test, and I think this is the case with most consultants. They look at the trend and if for example there is a continual increase over say 3 tests then they would act.
Im sure that someone with much more experience than me will post to agree with this.
Aaron has gone from being philadelphia negative to positive serveral times.
Keep strong.
Jayne xxx
Hi Parmjit,
Its been a year, almost exactly now. The Consultant has mentioned the other drugs but no more than that. I am holding onto the idea that the pcr can bounce a bit! He is having the next test next Wed, so it will be 3 weeks or so after that that we hear the result.
I have a strong suspicion that the expert our Consultant referred to was called Irene, so Im hoping this was the Professor you mention. We havent heard anything yet and Im trying to be patient!
Thank you for your reply,
Love kestrel
Thank you Jayne! Its just a shock the first time it happens I guess, but it helps to hear about Aaron's experiences. Im feeling a bit calmer now than I was last week and trying to keep things in perspective. There is every reason to feel very hopeful and positive! I dont think Ive ever been very good at waiting for anything though....
Love kestrel xx