Hello everyone I don't really write here much just when things start troubling me. I always log in to read all the positive things you all say. Well here goes my hubby has been on 400 dosage of imatinab since 2006. He had his pcr tests? Last month & was called to see his oncologist today apparently the imatinab appears to be not working anymore I'm sorry I can't give figures but his pcr has risen quite substantially he was in the zeros. His oncologist said it just maybe a glip so he has to go back in 4 wks to see him again. He's treated at the McMillan unit at our local hospital, but I know his bloods etc get sent to hammersmith. I was just wondering what would be his next step as I've read on here nice have stopped the next generation of drugs? I feel that he has been given a death sentence I'm so worried I'm going to lose him. Anyway thanks guys & good luck to you all.xx
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Results going the wrong way
I'm sorry you're having to deal with this and the worry it can bring. However, just like when your husband was first diagnosed the what-ifs running through your mind may overtake reality. Firstly, it's important he get re-tested to check the result, this could be a technical blip. Secondly, I believe NICE has approved Tasigna (Nilotinib) in England and Wales for imatinib resistant patients - I'm sure Sandy will be able to better advise on this.
I know the next few weeks will be very worrysome and stressful. Try to not worry (I know it's easier said than done) and stay positive - worrying will not change the outcome.
I will keep my fingers crossed that everything works out well.
Chris
Dear Belinda,
as Chris has indicated- this result is probably a 'blip' and given his tests are done by HH I would add that they have recently introduced a much more sensitive pcr...i.e it will detect even lower levels of bcr/abl that before.
without the actual numbers it is difficult to advise you... you say that the rise is 'significantly higher'. This makes me think that it is likely that the retest will reassure both of you.
Even if the next result does show a significant rise in bcr/abl % there are good options open to your husband. both dasatinib and nilotinib are currently available until NICE publish the TAG (technology appraisla guidance) for das/nil in second line use. This will not be published until the results of the appeal are known and that will not be until 2nd week in January 2012, so there is still time.
It is also very likely that nilotinib will be available because of a patient assistance scheme (PAS) offered to the DoH by the manufacturer.
So do not despair, options for good responders, which your husband is because his disease has already been shown to be sensitive to TKI therapy, are very good.
I hope your are reassured,
Best wishes,
Sandy
The advice you've already received is spot on, blips can and do happen. My bcr-abl was coming down nicely since my dx last year and all of a sudden the results started going the wrong way. A retest showed that the levels had started to reduce and have continued to do so ever since.
I'm sure the new equipment at HH over time will give you great assurance due to the new levels it can measure at, hopefully your other halfs results will bounce back with the next results.
And of course, Nilotinib can be a lot more effective than Imatinib and will hopefully be available on the NHS in the future regardless of the NICE Appeal.
Put the bad thoughts out of your mind, concentrate on the next step in the process as its pointless worrying about things that may never happen (well, thats my motto anyway!).
Thank you everyone for taking the time to answer my questions your all very kind. Sandy I have found out my husbands BCr abl was showing to be 0.79? Thank you.x
Dear Belinda,
do you have the previous result to compare this one with? 0.79% is still a molecular response but you would need to know how much the 'rise' was to assess whether there is any significance. Even so, the next result will show if there is a rising trend or if this was indeed a 'blip' (most likely)
Best wishes,
Sandy