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pcr not a good result talking about Dasatnib please advise

Hi, I went for my check up yesterday and was told that my pcr able test had increased by 6 fold. I am not sure exact count but it was a lot higher than usual. Anyway they repeated it yesterday and said if still as high they are proberly going to put me on Dasatinib, as although I am only on 400mg daily of glivec I don't tolerate 600mg very well, as well as the problem that I have after taking glivec I have become increasingly nauseaus and take anti sickness medication before taking glivec.
I am really after a little feed back about changing drug.

I am feeling a bit low and worried even though I knew this would be the next alternative if I became resistant to glivec (diagnosed Nov03) I find that when I get home I feel very isolated and frightend about the future, something that you must all feel.

Michelle

Hi Michelle

You're not on your own! I'm in exactly the same position and feeling exactly the same way. This is the 3rd time I have found myself facing the uncertainty of a change of treatment, since being diagnosed 7 years ago. Initially, I swapped from Interferon onto 400mg of Glivec, after about 3 years and then I had to up my dose to 600mg about a year ago, when my PCR results were heading in the wrong direction again. My consultant has told me earlier this week, that it may be happening again and I may need to change treatment once more.

For me, the change from Interferon to Glivec was a positive thing, in terms of side effects and response and i have heard that the new drugs are even better, in this respect. I hope this is the case for both of us, if and when it happens.

Onward and upward!

Best wishes
Chris(Tufty3)

Hello Michelle

Early this year I changed to my 3rd treatment since diagnosis in 2001, starting on Nilotinib (amn 107) in Jan this year. It was a difficult decision, but an inevitable one as I had such bad side effects from Glivec and my PCR was rising. The few weeks before were really hard while I struggled with the idea of another change. I started on Interferon, had a terrible reaction to it and began Gleevec in Feb 2002.

Right now I am feeling great - no edema, no nausea no glivec 'botty' very little pain, my own face back and I have lost loads of weight (fluid retention on Glivec was a real problem for me) The first few weeks were hard, as I had a bout of pancreatitus but now I feel better than at any time since diagnosis.

Good luck with your decision and the change.
ATB
pennie

Hello Michelle

I thought I would just join in - you are very certainly not alone! I have a static or slightly rising PCR and have just gone from 400mg to 600mg glivec. I am due back in clinic next Tuesday to see how my blood counts are coping with the increase. I was diagnosed in Sept 2006 and this is the first time my treatment has been altered.

Yes it can seem a very lonely world, especially when the waters are a little more choppy and the news from our doctors is not quite what we want to hear. Ours is a rare form of cancer and few people have it. But that is where boards like this, and others like it, are so valuable and provide such support. It is great to know that there really ARE other people out there with CML, and cyber space is a great meeting place! :-)

Also, whereabouts are you in the country? Maybe you will find someone here is close by and you could meet up...if you would like to chat on the phone, email me your phone number and I will give you a ring [dinasperrys@hotmail.com]. Always happy to talk!!

Take care,
Janet

Hi Chris,
just replying here to your question on the thread below regarding plasma testing.
I am so sorry you consultant does not see the usefullness of this as it is NOT just for patients who do not take their drugs!!!!
It is indicated for patients who are not responding as expected or for those who are having bad side effects. the plasma level can work both ways... too much and too little.
you need to contact the EUTOS team and ask for their support... maybe they can help convince your doctor and explain his mistake!

smip from the instructions for sending samples to EUTOS... Any questions?
Please direct all queries either to a Novartis representative or to the Bordeaux team. The central dosing facility in Bordeaux may be contacted directly at

imatinib@chu-bordeaux.fr

other than that I would recommend you talk to your doctor again and maybe print off the information from EUTOS so he can take a look for himself. although he probably wouldn't like that would he?
It is difficult when doctors are reluctant to follow best practice...... but you know that already!
let's know what you decide to do. It may well be that you do not have the right plasma level (1000 ng per ml) so drop the bordeaux team a line and see what they suggest.

Sandy

Michelle
Thank you all for your comments it really does feel nice to know you are not alone. I am going back in June to see the results of the pcr and discuss further if the results seem to still be rising.
One thing was said that I can't seem to get out of my head, was that please do not worry, as there are lots of things to be done because now they can tell up to two years before you may go into blast crisis and decide very early on how to stop that happening, with the new drugs and one coming out next year, however what they don't realise when they say these things to you is how you feel emotionally having to live with all the uncertaintity and worry about the dreaded blast crisis stage!!
I know everyone on this site fully understands what it is like to live a life waiting for a time bomb to go off and to keep a happy and positive attitude to all around us that love and care for us while inside you feel like a small child with the all the fear locked up inside.
Again a big thankyou for all your advice, and support

Hi Sandy

Many thanks for your comments. I think I will try going direct, and then re-approach my consultant, if necessary. I will update when I have some news.

Best wishes
Chris

Hello to you all
Nothing to worry about, Doctors would not promote the idea if it was dangerous ? I had enjoyed a trouble free five years with Glivec, but it could not take me any further, changed to Dasatinib, and off we went again, CCR in just 12 months on only 50mg daily. So please don't let negative thoughts trouble you, have a go at somthing new. Been my philosophy since 1996, nothing ventured, nothing gained.
Happy landing
Keep smiling
Keith