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Gareth's message reposted from below

 

submitted by Gareth84 on Mon, 28/11/2011 - 18:53.

Hello everybody. I've just been reading thru these posts and thought I would tell my story and see if anybody has any advice for me. In April this year I was diagnosed with CML. I was sent home from the hospital with just a booklet and nothing else. I have been to the hospital many times for blood tests and I'm currently taking imatinib. The treatment is not working properly and I have just had a bone marrow test done to see what happens next. I recently went to my GP and asked to be referred to a Macmillan nurse because mentally and physically the CML was affecting me. He asked what my specialist nurse had said. I told him I had not seen a specialist nurse and he was angry about this and rang the hospital straight away to find out why. The specialist nurse just said I had slipped thru the net. Apparently tho I was supposed to have met her 7 months ago when I was first diagnosed. I have only met her once last week for the 1st time. I explained to her my aching body, my shins, lower back and arms especially and she basically said that it was psychological and that I should not be having these pains. this made me angry and upset because she is supposed to help me but she seemed against me.

 

Dear Gareth... your GP is right to be angry. You are not getting the specialist care you need. He/she should refer you to a more specialist centre who know about the side effect profile of imatinib which is exactly what you have described and is not in 'your head' as has been implied. I am not surprised that you are upset. 

Where are you being treated?

Best wishes,

Sandy