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my treatment

Hi I thought that I would just update as to my treatment saga as this week marked my 2 year diagnosis.

I am currently having absolutely no treatment - and feeling fantastic.

I am intolerant to both the glivec and dasatanib. I had almost a year on glivec and around 8 months on a reducing dose of dasatanib, with holidays whilst on both drugs.

I was only 72% ph+ve at diagnosis and quickly achieved CCR. My PCR was as low as 0.002% and the last PCR result from January - which was after 7 weeks off the pills was 0.08%.

The plan is to keep me off the medication and watch the PCR over the next few months. At a certain point I will either try the AMN or have a related BMT!

Can't wait!!

In the interim it is so nice to feel well again and to get rid of all those niggles, aches, pains and problems. However, just because I am choosing to go this route, under the approval and close supervision of my consultant doesn't mean that it is a good idea for everyone. I guess we all have to do what we have to do. I know that I am only delaying the inevitable ...........

regards
Susan

Susan

Val has just been off Glivec for three weeks in preparation for a second attempt at a stem cell harvest at HH last week. For the two weeks before she started the GCSF injections, she felt fantastic - no Glivec side effects and in particular, no tiredness. We had pre-planned a one week holiday for the second week and it was great to see her feeling so very well. In short, we know how you are feeling just now. So enjoy it while you can. All the very best to you for the future.

David

Val and David

Thanks for your kind words. I hope that the harvest went well and that they got enough cells, do I remember that she had it done before and they didn't quite get enough?
My husband also says that it is wonderful to see me genuinely feeling great - he could always tell when I was on the pills and said I was ok but in fact felt like ***t. Thank God for supportive other halves.
Wishing you both well
Susan