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Re: coming off Gleevec?

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Hi there Shelagh! I'm surprised to hear about the difference in our health

care systems.

I am on a public health care plan in the U.S. as I don't have private

coverage either. But when I did, my private oncologist was very resistant to

change although I had a tough time with Gleevec. In the public plan, my

oncologist is very open to change and says no one should have to compromise

their quality of life if a better option is available. Bless his heart, I am

doing much better with Tasigna.

I envy you that caravan -- sounds wonderful!

It's very hard to fully comprehend was life must be like for survivors in

Japan. So many shocks, so much loss and heartbreak ... on top of everything

else, it seems like it would be very hard to hold onto your sanity.

in San Francisco

On Mon, Mar 14, 2011 at 12:45 PM, Shelagh <shelaghnugent@...>wrote:

>

>

> Hi Lottie and all,

>

> I'm not sure it would be so easy to change my meds. It doesn't work like

> that in UK. In USA you seem to be much more in control of handling your own

> treatment (seems like a lot of hard work too!) but I don't have private

> health insurance and am dependent on the good people who work for the NHS.

> As far as I understand, the powers that be, who decide what meds you can

> have, are happy to allow Gleevec to be prescibed but it might be a bit of a

> struggle to get anything else unless it was necessary. Apparently Gleevec

> will be out of copyright (or the medical equivalent) soon and will therefore

> become much cheaper.

>

> So, being in a passive frame of mind with regards to my treatment (it's a

> great team and I have no complaints) I'm not about to suggest anything

> radical but will wait for a suggestion to come from my oncologist or his

> pharmacist. Then we can talk about it.

>

> My side effects are not horrendous. The biggest nuisance is a sort of hay

> fever - smarting running eyes. We've been out for a long walk today and I

> was forever stopping to wipe tear drops off my glasses. My eyes feel red-raw

> and itchy. I never had this before Gleevec. I take anti-histamines but they

> don't do much good. Cycling is even worse as I keep going into a wobble

> while I try to wipe the tears away! But onwards and upwards, I keep trogging

> on.

>

> We were going to take off for a few days this week. We recently traded in

> our trailer tent for a touring caravan and haven't tried it out yet. But the

> long range weather forecast wasn't so good so we decided to stay home and

> have days out instead. I'm itching to try this caravan - height of luxury

> from what we're used to - central heating and a proper bathroom! There'll be

> no stopping us. The only thing that'll slow us down a bit is the horrendous

> price of diesel here at the moment. £1.40 per litre in some places. About

> $3 I think.

>

> Shocking news about the Japan earthquake etc! I have a friend in Japan.

> Managed to contact her and she's OK. She's a riding instructor. All the

> retired horses that had been moved down to the coast have drowned. How

> awful! (And the people of course.) But what about the nuclear leaks?

> Horrors! I feel very lucky to be living in UK. We might be broke but not

> much in the way of natural disasters - so far!

>

> We're probably all doomed so eat, drink and be merry etc.

>

> Cheers! Shelagh

>

>

>

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