Hope
Hello dear people - just a little update about how things have been going. On Tuesday, nearly 3 weeks after the initial referral to Leeds, we got a short phone call from David's consultant's nurse, saying that they'd got a fax back from Leeds, and, no go. York will not provide any further treatment. Not giving any reason. Her suggestion was that maybe I should just keep looking on the internet...????? Which I never stop doing. In the last few days I've found a new mRCC drug - well, new to me, that is! (specifically targeted at people who are either intolerant of Sutent, or who it hasn't worked on - ie, D - the drug is Everolimus) which was launched in the UK on September 16th, that the folks at York hadn't heard of, plus an Open Access Study into it going on in 9 different hospitals in the UK I emailed a professor at the Christie Hospital in Manchester yesterday, with all D's details, and D rang his personal secretary this am - she thinks it looks very likely he will be suitable for inclusion in the study, PLUS she asked if he wanted a second opinion from this guy anyway. We'll probably have to get a referral from someone, but she thought that the GP might do. He is at the absolute forefront of kidney cancer research in Britain, and the Christie is apparently Europe's biggest cancer centre!! You would think that the consultant at York could have thought of this???? And I wonder what else is out there that I haven't managed to turn up yet, too. When I asked the specialist nurse on Monday how we went about getting a second opinion or a referral, she didn't even know! Is this because people are just yes sir, no sir, ok, now I'll lie down and die, when faced with the men in white coats??? I think that Mr Urwin, D's consultant, has seen him as a lost cause from the beginning, and that this has coloured his treatment of the case. A book that D and I have been reading talks about exceptional patients - it's all in your attitude, and I think it's the same for the caregivers. I have been so so furious, but I know it's wasted energy. Anyway, it seems that things are looking up, and we are keeping on going! Apologies if this is a bit of a rant! I'm at work at this minute - but just wanted to share this. Hope is a most wonderful thing x x x x x
Replies
Hi Mereil.
i hope so much that the Afinitor (everolmis) works out for D, and my prayers are with the 2 of you with this happenig.. I have heard it\'s a really good drug for MRCC, and no apologies, you put your feelings out to us and thats what DS is all about, more women should do this, inner feelings are what we can\'t keep in. so keep doing what your doing dear Mereil...
The best of luck and God bless the 2 of you...
My prayers are with you on this new hope, just know this will happen with your attitutude staying up there...Please stay in touch
Love,
Becca
Good Morning Meriel,
You go girl! How wonderful that you found this new study. I will be praying that D is accepted and that the Afinitor works wonders.
Keep the positive attitude, darlin, and all is gonna work out. God bless you and D.
Hugs,
Ingrid
Hello Meriel,
I am so proud of you both for not accepting such a pathetic response from Leeds. In hind-sight, that disappointment may be a great blessing if it spurred you on to finding Europe\'s largest cancer centre! Regardless of where one lives, everyone should get companssionate human care from medical professionals. I am hoping and praying so much for D and you that this turns out to be the place that gives D and you all the care, help and support you need.
Love to you,
Linda
Thank you folks
your thoughts and prayers are so much appreciated x x x
Meriel - hope is a wonderful thing! Glad to hear that you were able to jump the hurdle in front of you and come out ahead. It will be great to get a second opinion, and most importantly, it\'s wonderful to hear about D\'s positive attitude. Take care! - Karen
Many prayers and hugs sent across the way to you.god bless you both.