Kathy and Barbara: Gleevec Holidays

[Guest guest]

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)

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4080 (20090515) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com