Dec 2013
1:46pm, 5 Dec 2013
16,366 posts
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Steady Edina
mrs Jigs I understand but doesn't that mean the person concerned wins? However as I wasn't involved I will respect the wishes of others
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Dec 2013
1:56pm, 5 Dec 2013
315 posts
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lak
Well I have run out of options. My oncologist for my rare cancer doesnt want to give me the immune stimulating drug in case he kills me-I had bad colitis with it earlier in year. My cancer is stable in lungs and skin but 2 new liver lesions have appeared. Trying to get them ablated somewhere but as I m not curable I m not a priority. However I still run 30-40 m a week and cycle (although scanning and outpatients messes my schedule) i feel so well . In the past I got treatments for my cancer on IFRs individual funding requests, as there is no plan to treat my cancer it s to rare we have just used what has worked in similar situations in other cancers. However these in the NHS have to have funds. Normally common things are commmisioned and as I said in the past IFRs were used for rare diseases. Now these have stopped. I have no avenue of funding to purseue. I hope to get these 2 liver lesions ablated before christmas out my own pocket.
I just cant see how I could cope if I ddint run. I go out feeling so tense and angry by the time I get back its all sorted and I have a plan. Its just so sad I have such a low disease burden and so much healthier than most people at 55 its wierd.
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Dec 2013
2:19pm, 5 Dec 2013
16,368 posts
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Steady Edina
That must be very frustrating for you Lak if it wasn't for the cancer fund I wouldn't have access to Avastin
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Dec 2013
3:59pm, 5 Dec 2013
21,154 posts
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Mrs Jigs (Luverlylegs)
point taken Edina.
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Dec 2013
9:41pm, 5 Dec 2013
5,179 posts
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Roobarb
Tbh I'd rather have a new thread
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Dec 2013
9:47pm, 5 Dec 2013
5,181 posts
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Roobarb
I've started a new thread 'Cancer support thread'
Can we all move there pretty please? xxx
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Dec 2013
10:32pm, 5 Dec 2013
16,377 posts
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Steady Edina
Sure have you contacted fetch? I can't see a report button
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