RE: Hormones and Glivec 800mg - Sue

[Guest guest]

Hi Sue :-)

I read you email before I went to bed last night and couldn't sleep. I

tossed and turned all night.

I'm actually living in Melbourne, I have a working partner who lives in

Perth.

I've read it again with open eyes and ears, knowing that commonsense is

telling me this is true.

Between December 2004 and March 2005 was a nightmare as regards bleeding.

Then I had to have an infusion because my counts went down so much. After

that I went on the pill permanently, but of course this can't last for ever

more. I also have pretty high blood pressure caused by being on the pill. I

had never been on the pill before then. The stress I have incurred (over

that alone) since March 2005 has been enormous. Because of the fibroid, my

uterus is about the size of six months' pregnant.

The advice of my gyno was to drop the pill, let myself bleed and see how it

went. Warning bells in my head said no way, I would end up in a mess. So I

have an appointment at the Royal Women's Hospital in Melbourne in March and

I'll try and get a cancellation before that. I will take all my papers with

me because they need to know what's happening.

Oh to have something like a normal life back would be absolutely fantastic!

Rather this permanent daily stress worrying about my body all the time.

As a matter of curiosity, how old are you?

Kisses

Jackie

_____

From: [mailto: ] On Behalf Of Sue

Sent: Sunday, 11 January 2009 9:11 PM

Subject: [ ] Hormones and Glivec 800mg

Jackie

Many women have had hormone issues when they have commenced glivec and it

doesn't seem to make

any difference if one is on the 400 - 800mg dose.

Many CMLers have experienced very heavy periods - heavy clotting of blood -

time between periods shorter

and length of periods longer. The outcome of this - is that the Hgb counts

are down - people are becoming

very anaemic - with iron infustions, transfusions, hospital stays repeatedly

- loss of work days, fatigue

etc.

Many people go their gyno - and have marina coils - ablastion - or some

other treatments to support

the issue of blood loss.

My experience was extreme - whereby had your same issues - not fibroids but

heavy bleeding -

with infusions becoming more regular - then one day for no reason - had a

major bleed-out -

and I was extremely lucky - that I was still conscious and able to phone my

treating hospital

- who phoned my haem. who then treated me as an emergency - and gyno gave me

a radical hysterectomy.

Many many many bags of blood later - and a week in hospital - 3 months of

work - and back to normal.

In a round-about way- the hysterectomy saved my life, but also the

successful consequence was that my

bloods have been raised into the normal range. In fact my general health has

improved so much - we (family)

haem. / and GP or community medical team - state before hysterectomy and

after hysterectomy as the

difference is so great that there is a comparison.

My specialist gyno - who is one of the top guys in my City of Perth - said

it was a CML - glivec combination

and age relation was very minor part to play.

So my suggestion that saved my life is two fold.

Have a management plan in place and that means that you know what to do in

an emergency not just dial an ambulance

Know who your treating hospital is

Your neighbours have knowledge of your condition and they also know who to

contact in case of emergency

Have somewhere on fridge - phone etc - hospital - nurse manager - your haem

contact - and family member

Since my hysterectomy - I also have a bag packed ready if there is a need to

go to hospital - with a folder

with the last blood report - condition - all necessary information including

your blood type.

Think about a hysterectomy if things get worse - it is very freeing - and

your general health improves considerably

You can email me personally if you wish for more information.

Cheers

Sue (Aussie)