Eileen Cook?
Eileen Cook? Not sure if I have the correct name, but I think she is the Bristol woman taking HER Herceptin claim to the High Court today, anyone know the latest on this?
Case adjourned until an appeal by Ann Marie Rogers (who is in the same position) is complete.
A link for you news.bbc.co.uk/1/hi/health/4778018.stm
Don’t know if you’ve already seen this (or if it’s ok to post??)
Jen xxx
Also someone on the news tonight Claire MacDonald Was told the night before she was due to start the adjuvent treatment that Herceptin would not be made available to her. I know we shouldnt say any need is any greater but her children are incredibly young by the looks of them, at least two under 5 and she is also very young in comparison to most of us.
I think its rotten to know something may help and not be able to have it, my thoughts are with everyone in this boat.
I remember feeling adamant that I should get it and being blinkered about any other option, but these women are really in a difficult postion. The fact that a few PCTs are refusing is giving others strength to refuse funding also. The decision needs to be made centrally and handed down to the PCT’s to avoid all this - whatever the drugs are.
I still cannot think Anne Marie will get a negative response at the next hearing. I have everything crossed for her. (Hence the funny walk!)
Steph x
Thanks for the link, will go and have a look now!
Case in Berkshire Our local paper this week has the story of a 33 year old mum of 3 who is being supported by her oncologist (who just happens to be mine) in requesting Herceptin, but has not been able to have it yet because Wokingham PCT hasn’t approved funding. Amazingly the report says she is the first woman in the PCT area to request it.
the waiting game i was diagnosed in oct 2005 and have just finished my last of the 6 FEC. i was told the day before my final chemo that i was her2+++. i am 37 also with 3 children, the eldest is 8 and the youngest has just turned 1. my onc has advised that herceptin will be a good option for me and has written to my PCT but has to go down this exceptional circumstances route as i was only grade 2 with no node involvment and apparently this doesnt meet the ‘criteria’ set in Wales (i sometimes wonder if i hadnt acted so quickly when i found my lump would it have become a grade 3 or spread to the nodes then they would have given me the treatment!! so much for promoting self checks and early detection!!) i feel very bitter that i now have this worry hanging over me, i was so happy to be having my final chemo and then it felt like i was being diagnosed all over again. i know that there is no guarantee that the cancer wont come back with or without herceptin but i dont see why they wont give us a fighting chance. i pray that my local PCT will be made up of more women than men, maybe they will understand a little better but i dont think i have that kind of luck!! hey ho, we live in hope…
This saddens me so much… hatter,
I feel for you, I really do.
With regards to your node status and stage I know that there are a lot more PCT’s who are not prepared to give Herceptin in those circumstances (but I FIRMLY believe that it should be based purely on the fact that your Oncologist wants you to have it and nothing else)
PCT’s are now using the Anne Marie Rogers case as an excuse not to fund. In my area the Health Authority PROMISED me and a national newspaper, when they finally funded my treatment, that it would be avaliable to all HER2 women in my area “at the start of 2006”, just last week I discovered that they are now dragging their heels again in light of the Rogers case. I’ve been on to BCC about this and they are going to see if they can find out exactly what is going on … if it is the case I’ll be getting in touch with the media again and making as much noise as I possibly can!
I must admit I AM exceptional, but no more than any other woman, whoever and wherever they are.
Jen xx
thank you Jen thank you for the posting Jen, i wish i was one of those people who had the courage to go to the media but i just dont want my children knowing that it may come back. Whilst we havent hidden anything from them they think that now most of the treatment is out of the way their mum is going to be ok and i pray that’s the case. i have written to my local AM and he has been supportive in writing and saying that if needs be we will go to the press directly to see if it helps but you are right in so much that Anne Marie Rogers case will be a ‘tester’ and i pray to god that it goes in her favour so that the rest of us dont have to go through the same traumatic experience that you and others have had to
hatter my boys are 7 and 8 and were totally behind me and included in the tv interview, giving them some real street cred at school!
I can imagine how you feel now, I used to feel really anxious reading about Herceptin and my HER status.
I ‘sold’ it to them as the drug being made available to me would be the best way to ensure I didnt get ill again.
Levels of understanding are different with all children and we have only explained things on a level they can understand. Anything further will be dealt with as and when!
Fighting for and getting Herceptin gave me the biggest feeling of control I have had since dx in Aug 04. I feel other people look at me as being determined rather than the ‘victim’, which did wonders for my self esteem.
which we all have in short supply during treatment!
You may not feel able to fight at the moment, fresh from treatment but it would be well worth it, I think once you get the ball rolling you do whatever it takes.
If you do decide to go for it please ask for help if you want some, Jen helped me loads and we’ve both found some good contacts!
Take care!
Steph x