Hi,
Thanks to everyone who responded to my request to understand what questions to ask.
I have been on Glivec for a couple of weeks and just had my first two week follow up.
My initial white count was 45k (I thought it was only 25k!)
I am 100% PH (they tested 10 and 10 came back as PH+)
I have no other mutations currently or Trisomy (spell?) 7 or 8.
My Red and Haemoglobin and Platelets were high before also.
Now my two week results my white count is 10.5 and all other cells are Red and Haemoglobin and Platelets are all in the middle of the normal range.
My hemo doctor has said that it looks encouraging but of course nothing can be told until BMB in three months but they will continue to monitor my bloods on a bi weekly basis.
I was going to ask for a second opinion but she told me that they work very closely with Addenbrooks, Liverpool and Hammersmith Professors and a couple of patients are referred there when needed.
My Hemo/Onc is currently looking after 11 people with CML so I feel very comfortable.
She said while she is no Mystic Meg and cannot promise me "how long and what may transpire in the future, for most patients now days there is very good long term prognosis especially with the range of drugs available.
She said that Transplant is not a good option unless I fail all medications. (I am mixed race and have no siblings or parents so it would be difficult or impossible I think to find a good match with donor anyway)
She did also mention she has one patient who has never achieved CCR and has been ok for 19 years!!! So proof there is always hope even against the odds.
Thanks for all your feedback and encouragement and while, yes it sucks to have this..I could be a lot worse off so I thank God for every day.
Kind Regards
Bill