Hi my partner was diagnosed 18 months ago, and has been taking imatonib, on tuesday we were told this was no longer working due to his latest blood results, but they failed to explain what the results meant, they said it should read 1% and his is 543% .... 1% of what?
BCR-ABL/GUS (IS) 543% can anyone explain.
The other problem we live in Portugal, not fluent in the language and there is no support mechanism, his consultant knew about these results back at the beginning of March and has just told us, the new tablets have to be approved by a medical board who sat today and didnt discuss the case, we were told to call back next wednesday and just keep taking the imatinib.
As you can imagine its all very stressful, what is the long term effect of not having the right tablets now, do we cut our losses and come back to the UK in the hope that we can get treatment, (we are british nationals only been in Portugal 4 years) my partner is 59 so both still working, Has anyone been in this situation either having to change tablets or move back to their homeland due to illness. thank you for any help/advice
Hi again, I am Mike Thehighlander and I help out around our blood cancer groups. I don’t have AML but a rare skin Non Hodgkin’s Lymphoma but over my 22 years I have had lots of the treatments used.
You are having such a challenging time and blood cancers like AML are very complicated with lots of detail so the language barrier will be so hard.
You question about the results and drugs goes way over my head so could I suggests you put up a question to our Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
Lets see if any of the AML group members are looking in.
It’s always good to talk so do call the Macmillan Support Services on +44 207 091 2230 from outside the UK with most services are open 8am to 8pm, 7 days a week.
This service can give lots of cancer information, support, financial guidance or just a listening ear and a good place to talk through the practical challenges you are both facing.
Always around to help out as best as I can ((hugs))
Do keep in contact as there are folks on the site who may well pick up on your post ((hugs))
