Hi.
I am 67 and have just been diagnosed with CML. The consultant at my local hospital (in Edinburgh) has asked me to consider taking part in the spirit 2 trial. What things should I ask her about as I try to make up my mind? I am finding it hard to think straight at the moment!
Dear Olivia,
I am sorry you have been diagnosed with CML, but you will do fine. It will take some time for you to learn all there is to know but gradually you will begin to understand.
I am sure your doctor will explain the trial to you. I think there are 3 arms to the trial and one is now closed?
see following link:
You should ask how you will be ramdomised and if you will recieve the best possible therapy no matter which arm you are allocated to.
Ask also what therapies are used in the different arms and ask for the results so far. The trial has been going on for some years so there should be good data to help you make up your mind.
You could also ask if you can cross over from one arm to the other if you do not respond to the first one allocated to you.
It might be that you would much rather be treated outside the trial with the current first line therapy of 400mg of imatinib (Glivec) and it might be that you will respond well.
However, in my opinion clinical trials are very good ways of ensuring you are effectively and expertly monitored. So that is on the plus side.
They also allow patients to access newer therapies. I was part of the original clinical trials for imatinib (Glivec) back in 1999 (I traveled to the US)and responded very well. Things have moved on a lot since then and the SPIRIT trial is a good trial to be involved with. But you must feel comfortable with it and its protocol.
Ask your doctor to take more time to help you understand. Everyone is different and it should be taken into account that you are very newly diagnosed and might still be in some shock.
Edinburgh is a good place to be treated by the way.
best wishes,
Sandy
Thanks for your response, Sandy
I have now signed up for Spirit 2, and been assigned to the imatinib group. I have just picked up the prescription and take the first dose tonight...
I am very confident that the doctors in Edinburgh know what they are doing, and it seems to me that they have moved with exemplary speed to do all the tests and get me on to the drug - I received the diagnosis only 10 days ago.
Yes, I was in shock when I first heard, and it took me several days (and sleepless nights) to begin to come to terms with it. However, I am lucky enough to have a supportive family and friends, who have put up with my changing moods. Also, reading about some of the experiences of fellow patients on this website has helped a lot.
Olivia
Dear Olivia,
If you need any advice at all do not hesitate to ask here.
It might be a little early for you but there is a CML Patient and Carer Day on Saturday 14th November at Nottingham.
Lots of people who have CML and the specialist Doctors from around the UK meet up for a Seminar about CML and the various therapeutic options. It is good to meet other patients and if you can come with a family member or friend it also helps them to understand what this disease is all about.
It is a free day with lunch included. But if you can't make it don't worry... it happens every year.
Meanwhile best of luck with your therapy and don't forget to take the tabs with a large meal. Also try hard to drink plenty of plain water, it really does help.
Sandy
Hi Olivia
I am too on the Spirit II trail on dasatinib I have just started my 3rd month on the tablets and I am still coming to terms with it - although I find keeping positive helps and as many people say on this forum - things have moved on so much from 10 years ago and I feel lucky that the current treatments are having great results on so many people - keep in touch - although I am miles from you I am based in Colchester Essex
