Re: Kathy and Barbara: Gleevec Holidays

[Guest guest]

Hi, I have not been on Gleevec in years as it did not work for me, but I

have wondered many times why so many people want to take a vacation from it,

or get off it, as it is their life line. People that are diabetic and

people with high blood pressure and many others for many other reasons are

on meds for the rest of their life, in order to live. That's all gleevec

is, a pill to let you live. If someone would rather die than have the big

" D " , or nausea, or a rash, that's understandable, but not likely. Geesh, I

hated Gleevec , and it took me months to get used to 600mg, then 800mg, but

it was still better than the alternative. I'm now on Ariad, thankfully the

most annoying side effect is fatigue, but that isn't bad, it lets me sleep

like a baby! But what if it does not work like the other five drugs, I

think maybe i will be wishing for the bad side effects of Gleevec or any of

them. I hear a rumor there are two drugs in the pipe line if Ariad does not

work, but they are infusions, and I sure hate them! So, I think, never mind

the vacations, don't risk it, stick with what works, and keep your fingers

crossed that there are more great drugs right around the corner!! Drugs

with no side effects! yippee!

Blessings to all, Bobby

On Sat, May 16, 2009 at 9:29 AM, Sue <hollie@...> wrote:

>

>

> Hi Kathy

>

> The only time was when I had an operation and the reason was not the

> operation was that I had huge amounts of medication

> including anaesthetic etc including transfusions, and medicos thought there

> maybe interaction with other drugs.

>

> I am PCRU and even though I have had quite a range of severe side effects

> these have been able to be managed.

>

> I am still a newbie in the CML Game - and only diagnosed in 2007 so 6 years

> is a long time living with the condition

> and gives all us new CML people confidence.

>

> My CML specialist has never discussed that one could cycle off or on with

> glivec?

>

> In fact it is the other way and at every visit and that includes my GP and

> CML Alliance Nurses when they contact

> is that they stress to be compliant by taking glivec or medication

> prescribed as it is very easy to forget to take them when you are feeling

> well.

>

> So I have to ask, Is there a reason that you would want to stop a

> medication that is saving your life? Is there a quality of life issue or

> side effects

> issue.

>

> This is a serious consideration and my suggestion is to discuss all the

> issues over with your specialist, including family.

>

> ----------------------------------------------------------

>

> Hi Barbara

>

> Like you - I have had the one glivec holiday for 6 days only (last year

> 2008).

>

> I had a bleed out and was rushed to hospital (outcome - radical

> hysterectomy).

> Best thing that ever happened actually - when you look back in hindsight.

> Free from periods. Yeh!!

> No more anaemia, iron infusions, blood transfusions - I am knocking on wood

> here just in case I have whammed myself.

> Definitely a CML before Hysterectomy and CML after Hysterectomy.

>

> I am on 600mg glivec. Just in that small amount of time - the awareness I

> felt - amazing.

>

> My 6 day holiday break did not make any difference at all to my levels only

> in how I felt.

>

> When I commenced back on glivec I started on a 400mg dose for two weeks and

> then back to my normal dose of 600mg.

> The difference between not having glivec and 400mg was very little in the

> awareness or alertness perhaps but the 600mg

> - brain fog set in nearly straight away - I actually felt different.

>

> The difference since you commenced glivec of 5 years - even in that short

> amount of time is amazing.

> I have never been on any other treatment except for glivec, so there is a

> difference straight away in how CMLers treatments are managed.

>

> I have been blessed by having Tracey, Lottie, Zavie, (Down Under),

> and all those on educating me on CML.

> I haven't responded to you previously Barb, but have read many of your

> comments and learned from them, not only in but the UK site.

> From the knowledge I have gained - and not from the medical profession from

> fellow CMLers, even though PCRU I don't know if I would be

> courageous enough to stop glivec for 5 weeks without feeling nervous of the

> outcome of waking up those sleeping cells as you stated.

>

> Food Poisoning - The Big " D " - probably wise to stop glivec if you have

> food poisoning - nothing worse then that nausea feeling and sitting

> on the loo !! I have the Big " D " about once a fortnight for no reason that

> one can detect - not food related so obviously a glivec reaction and

> that is bad enough.

>

> As I am writing this , I can hear my horses, so I should go and check on

> them - very cold here at present - 9.30pm (nights are getting very cold)

> even my dog doesn't want to go outside to come with me.

>

> Keep Well

> Sue (Aussie)

>

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