Glivec and Irregular Periods

[Guest guest]

Good Morning All

Since joining the group I have been asking your experience with glivec and

periods as I was experiencing

terrible periods which I never had prior to CML.

I was not sure if CML - Glivec - Age related - or abit of everything.

Note: Prior to being diagnosed - I thought I was nearing rmenopause as I had

only slight discharge and not a period at all.

On diagnosis of CML - over a few months - actual periods started again.My

periods having been very clotty and not hormonal type clots.

Very irregular and periods starting to be longer of a time period. So thought

it maybe related to the glivec in the main.

Last week - what an adventure.

Had a major bleed that left me with a very very low heboglobin (spelling) hgb of

44

Raced to hospital after collapsing and still blood could not be stopped

When stablised after many more bags of blood it was decided to give me a radical

hysterectomy.

This has now been done - feel sore and sorry

Home again after a 7 day stay

Specialists think that the change in periods is both CML and Glivec related but

have not done many studies

as many of the women diagnosed are older or have previously had hysterectomies.

So it looks like we are

all guinea pigs in part.

It looks like I was born under a lucky bushel as I had so little blood left that

I only had some hours to live if

I had not been stablised with transfusions etc, in the end had some 19 bags of

blood. The massive bleed

came on very quickly - so one must be vigilant with our health.

I would now suggest that anyone has irregular periods ask for a referral to a

specialist gyno who specialises in

uterine cancers and will work with your haem.

I would also suggest to put on wall or fridge a note of who to contact - what

hospital you wish to go to in an emergency

- drugs being taken etc. and contact numbers of your medical team.

I had done that - and when neighbours found me - they knew what to do and who to

call and so gave myself the best chance

of survival.

CML is never boring.

In my gut reaction I think it is a glivec reaction on some woman and more

studies should be allocated to hormones.

Of interest is the thryoid hormone as discussed in the bulletin.

Thanks for the info from your chat last evening.

Cheers

Sue (Australia)

[Guest guest]

sue thank god you were proactive in your care and have great nieghbors, glad

you made it . It's very kind of all of you to share ur experiences because

the worse part of this bug is accepting the constant scares . just wanted to

get some feed back on an event that took place in my life. I think when i

joined the group, i shared it with u guys but since then I found out more info

on

the event:I lost a friend recently who was my cml mentor sha wz the 1st cml

person i had ever met. she seemed fine and wz in remmision all along, and

then BOOM she developed a lung condition wasted away in a month and died of a

heart attack after not beeing able to breath for about two weeks, now that her

husband is wakeing up from the nightmare of his loss, we spoke today and he

said that when she wz dx with cml all there was at the time was interferon

and later hydrox the in 2001 gleevec: it suposedlly caused legions on her

lungs or so said her onc. so she was returned to hydrox...she began to suffer

breathing events for 7 yrs.progresively until last month ,I called my onc/hemo

and asked her about that possibility and she had no clue :now i hv been

having breathing and chest pain events as well ,i've been to the er 3x hd blood

work, chest xrays and nothing shows has anyone ever heard of gleevec causing

lung leagions before?i've looked on line and the most i've seen is posible

fluid buildup on the lung/heart/brain lining but never lung legions.

aliza yaffa

rochester n.y.

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