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For Cheryl T & Women and Bleeding - welcome to my world

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WOMEN AND BLEEDING (Glivec side effect)

This message is for Cheryl T and others with womens' bleeding issues.

Emergency Treatment for Bleeding

I heard that a number of women are again having bleeding problems with glivec

and Cheryl T

has had a traumatic experience being rushed to ER for Transfusions to stop the

bleeding.

Thought I would share for Cheryl my experience.

The message is two fold

a.. Before I share - I would like to suggest for all women once diagnosed with

CML and still having periods or not -

b.. please get yourselves the best gyno who will care share your CML side

impact issues with your CML specialist.

c.. To have a Treatment Management Plan in case of an Emergency (like that of

an evacuation plan)

d.. including contacting neighbours so they know what your treatment plan is

(leave in a clear view - on fridge door or somewhere people can get to and

follow the information of contacts if you are unconscious etc

e.. My own is a gyno specialist who treats all types of cancers plus being an

obstetrician gynaecologist and a urogynaecologist and

share cares my Treatment with my Haem Specialist . My Haem. researched and

found this guy for me which proved to be the

difference in an emergency bleed-out situation.

My Experience

I was diagnosed in 2007 ( like many others on my birthday)

Glivec (600 mg)

Besides all the common side effects that generally everyone receives as the

trade off of having a great drug like glivec.

I also which seems to be again quite common to lesser or more impacts is that of

Period Bleeding.

By the end of 2007 - my periods time span between each period was closer

together; very heavy flows; flooding, large clotting

and by the beginning of 2008 life was beginning not to be too great. During 2007

besides taking iron tablets for the anaemia I was

also having many iron infusions, and by the first part of 2008 infusions were

becoming frequent.

The bleeding became such a problem that at times could not leave the house or do

work in the

paddocks - nearly house bound but not quite. My specialist (CML) had booked me

into see the gyno - to find out what options and

both specialists along with another Professor in the Gyno field were deciding

which option would be the best for me. At this point

I was bleeding quite heavily continually with only perhaps a couple of days rest

from bleeding in between.

Well never made it to the first appointment which was the following week.

The Sunday - I looked completely white and was not feeling that well. Monday -

had a massive bleed-out and luckily enough as

is this world - I collapsed in the shower, came too, crawled to the phone, rang

my treating hospital who phoned an ambulance and

my specialist who in turn had all bloods ready for emergency transfusions along

with every known specialist - cardio, renal failure guys

etc. Apparently near death with very little blood left in me - perhaps a leg

full.

My neighbours stayed with me until the ambulance came and then phoned my husband

who was at work. Many transfusions later

which did not stop the bleeding by the way - a decision was made to have an

emergency radical hysterectomy. 4 1/2 hours later

and more transfusions - a week in hospital and 3 months off work at home. It

took me at least 7 weeks to walk normally and another

couple of weeks before I could drive just locally.

Great positives in this story.

There is a before and after - wonderful having a hysterectomy. So very freeing

I have not been in hospital this year for bleeding at all. I have only been in

hospital for a gastro bug where I needed fluids.

My haemoglobin is up - I am PCRU - and note: during all this bleeding problem my

PCR was falling all the time and CML responding well

to glivec .

If I had not had a bleed-out in such dramatic fashion - then I would of possibly

had an ablation - DEC or Marina Coil or other type of support.

Marina Coils I have heard from others experience who have had CML only have

lasted a short time and then they have decided on a hysterectomy but

in their own time and own decision and that decision not taken away from the

family.

I nearly lost my life if I did not have an emergency management plan - my

neighbours not close by who in the end also contributed to saving my life

and cleaning up my house after my bleed-out so my husband would not have come

home and see what looked like carnage.

For Cheryl

This is exactly what happened to me - pills did not stop bleeding. Within a 24

hour period (April 1st) by the way - an emergency radical hysterctomy -

as the bleeding just did not stop - then a number of transfusions to top me up

again - the difference is amazing

If you have the operation - I have a number of hints now to get over it - and

please contact me privately if you wish to converse.

Hopefully you will not continue to bleed - but from experience - this will

continue to happen until a decision is made one way or the other your treatment

options.

This type of bleed-out takes a long time to get over - and possibly like myself

you will lose tons of weight but never fear it will return (weight that is) -

you will be very weak and you will need a strong support network -

Glivec:

I stopped glivec for 6 days - because of all the other drugs given - then

started on a smaller dose for a week then back up to my normal 600 mg

Thinking of you today Cheryl - keep moving those toes - breathing is my

favourite thing to do - things will improve - any pain or more bleeding - press

that buzzer asap

Sue (Aussie)

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Sue,

Thanks for your story. I have been on Gleevec 400 mg since early October

2007. My periods have stayed the same time wise - perhaps a couple of days

closer (like 27 or 28 day cycle). But, I HAVE noticed more and larger

clotting in the past 6 months. Thank you for this information. I will relay

it too my husband and in some way family members.

Tammy

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