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Resistance, Glivec and BMT

Hi All,

I need a bit of help, freaking out a bit, been on glivec for about 7 months now and I got my first resutls back from my 3 monthly test which was at 2.6% and after my 2nd 3 monthly test it had gone up to 3.1%.

My doc seems to think I could have further mutation and he even mentioned that maybe a BMT is an option!!! Freaking out a bit as I never even thought things would go wrong or even go down that path of a BMT, what is the success rate of a BMT??? is there anyone out there that has survived one? I've only hear bad stories.

I know I might be getting ahead of myself but next blood test isn't till early march and they will also send the bloods off to another lab to test for mutations....also doc has increased my glivec does to 600mg so far all good no real noticeable side effects.

As I said I know I might be getting ahead but I thought things were going to be fine once I was taking glivec, I'm only 28 and wanted to started a family but seems like that may not happen!

I know it is easier said than done, but don't panic! There is a margin of error in all these tests. Your initial response to Glivec looks good to me and there is no reason why it should not continue to improve over the coming months. It took my wife about 2 years to get to a full response with the help of 600mg Glivec a day for some of the time. She has now reverted to 400mg and has retained that response for over 3 years. I do not have much knowledge of BMTs but I think Sandy Craine is a shining example of what can be achieved!

Simon

Hi Patrice

As Simon says - don't panic too much just yet! I know thats easier said than done. Are you being treated at/referred to a specialist centre? They have the most up to date info and testing, particularly for possible mutations. There are other treatments available - even with all the mess up with NICE.

Specialist centres for CML are all over the country - so if you are not going to one yet there should be one that you can get to,(you need to see speak to the experts, not just have the bloods looked at, the bloods cant ask the questions!!) Even if you go for a one off consultation this will give you pointers as to possible options. BMT centres are the best places to give you all the most up to date information.

Thinking of you
ATB pennie

Dear Patrice,

Your doctor does not seem to be in a panic so you should take that as a good sign. I agree with Simon that your initial response seems pretty good ... do you know what your baseline PH+ % was? Most people are at around upwards of 90% at diagnosis so for you to have a responded so well within the first 3 months with such a large reduction is within expectations of an optimal response.
The difference in your two PCR's is relatively small, but I agree that you should be looking for further reductions. The fact that the 2 results are very close without further reduction might be why your doctor is asking for further tests to identify a possible reason. However, PCR's can be quite tricky and sometimes it take at least 3 results to see a trend upwards or downwards..... the trend is the key to assessing response rather than individual results in isolation, as it might be that you do respond to the higher dose (this is very likely).
It is important that you try to get the result of the mutation test asap as if you do have an imatinib resistant mutation you would need to change drugs to either dasatinib or nilotinib.
If you can, do ask your doctor for the results of the mutation testing asap .... this it not a complicated test and should be available quite soon. Ask him/her to let you know the result as soon as they get it. Then you will be able to assess your situation.
Access to dasatinib and/or nilotinib might be a problem after March/April if NICE go ahead with the conclusions of their initial appraisal of the two 2nd generation drugs and refuse NHS funding for both because they are more expensive that 400.600mg imatinib.

As for BMT.... leave thinking about that until you are better able to assess where you are with TKI therapy. 600mg might be the better dose for you. BMT's have come a long way and if you want to you can take a look at my diary..... I had a newer form of stem cell transplant in 2003 and responded well.
But transplants are unusual these days for CML patients since the advent of imatinib and the 2nd generation TKI's.

Sandy

Patrice, I hope if enough of us say it you'll be convinced!

It took me 6 months post Dx to get to 3%, and in the next 6 months I only got to 1.9%. Three months after that - 0.04% and PCRU three months later.

Your first result was a very quick reduction, and if you react like me there is a very good chance the March number will trend in the direction we all want for you. However as Sandy says there are other options even if it doesn't. Please let us know what happens.

Alastair

Okay I feel much better now having read all your responses, it's just hard cause my next test isn't till early march and my doctor doesn't seem worried at all, it's just he said BMT and I was like what!!! And as you all said and my doc told me they don't tend to do BMT anymore, as there are other drugs for mutations etc, but when he said maybe we should be getting your family tested to see if they were a match I was like what the......

I don't know it's just really hard the waiting I find as my next test isn't for another 3 months, and it's cancer! I just don't like waiting.....also I'm from Australia and as far as I know there isn't any speicalist centres that I know of???

I've just read some really aweful things about BMT I don't want to even think about it, I suppose my mind just jumps further ahead about what if and if this happened, but after hearing all your responses I feel much better.....

So what are the other drugs I can go to if Glivec doesn't keep working? dasatinib, nilotinib and sprycel, are these ones for if you have mutations in CML???

My levels of CML when first dx was really high, they found it when I went for a blood test for pregnancy, as to my shock when we found out I had CML and was 8 weeks pregnant I lost the baby a week later, these things happen and I'm fine with it, I just want to get my levels low enough to try again.

Thank you all for replying, all help is greatly appreciated!

Hi Patrice.... where are you being treated. Let me know and I will advise. If it is Australia then there are definitely expert centres.

Dasatinib (Sprycel) and nilotinib (Tasigna) are the two 2nd generation TKI's should you become resistant to imatinib. They are both extremely effective alternatives... if not even more effective than imatinib.

Sandy