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Re: :Sharon S update - Hormones

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Hi Sharon,

I share your misery and questions about whether Gleevec causes

hormonal issues. I stopped having periods altogether for a year

(which was fine with me!), but now they have started up again, and

quite heavy and uncomfortable. I am on 600 mg of Gleevec per day,

so I don't know what the heck is going on. I am 53, so right at the

age where I expect menopausal stuff to be happening, but I have had

these SEVERe debilitating sweats--I mean I have to change my clothes

and shower--I am wringing wet--sweat dripping off my face, my hair

wringing wet, etc, and this happens 5-10 times per day. I have had

these for several (I'll say 5) years--even before I was diagnosed.

It is just awful. Nobody really knows if it is the Gleevec, the

leukemia, menopause or what--and nobody really knows what to do

about it. I am considering having Botox injections to at least stop

the facial and head sweating--maybe I could function a tiny bit more

normally if I wasn't constantly in the midst of a big sweat-fest?!

Anybody else having sweating like this? I have them all day--and

sometimes all night too so I am never very well rested. My counts

have been undetectable, so I am in good shape CML-wise, and for that

I am truly thankful! We are in the midst of a heatwave in Seattle

right now, believe it or not--temperatures in the high 80s and 90s

and we are suffering! Seattleites don't know what to do in weather

like this. I am working in an air conditioned building, luckily,

with a fan blowing on my face, so I will survive it.

Best wishes to all, and here's to the Seattle rain coming back--

Hurray for 55 and drizzling...my kind of weather.

Vicki

>

> Sharon

>

> Hormones

>

> " Sharon States - I will have a 7-10 day period then it ends for a

few days and

> then starts back up again.I am scheduled for a tubal and

endometrial

> ablation for Sept 5th to hopefull help this issue.Anyone else

having

> menstration issues while on Gleevec? "

>

>

> You obviously have a good gyno and had all the options - hopefully

the ablation will work

> for you - ask your gyno about marina coil (Spelling) as well.

Sometimes this can work

> and other times not.

>

> Have you discussed with your cml specialist about going off or

keeping on glivec and other

> drugs while you have the procedure or if Hormone Replacement is

needed.

>

> Suggestion:

> Keep a diary - and take also to hospital and to both your gyno and

cml specialist.

>

> My Experience is one for the ages.

> Exactly like your own experience - very heavy periods - clotting -

aneamia - transfusions

> - and this went on for quite a few months. Until I collapsed thru

loss of blood - or the blood

> just could not generate itself quickly enough. Raced to hospital -

had a radical hysterectomy.

> The blood was also leaching into stomach and other cavaties in the

body sometime prior to

> actually this stage, where specialists vacuumed I suppose for a

better word - all the blood that

> was left. Many transfusions later and here I am. I was off

glivec for 14 days - like a giant detox.

>

> Did glivec cause the hormone problems - I would state yes -

however all the specialists think

> it is a combination of Age - CML and Glivec - no-one seems to be

able to confirm - but my experience

> is that glivec is more than an incidental culprit.

>

> Many women of all ages are reporting hormonal problems and perid

issues - some have had ablations,

> other procedures, and a few like myself the option taken out of

hands to save life and limb.

>

> So do not take hormone and your bleeding problems lightly as there

can be consequences if you do.

> I was just very lucky.

>

> Best thing you can do is have your CML specialist and gyno

specialist be able to share care your issue

>

> Hope you are feeling better soon and the ablation does the trick.

>

> Sue

>

>

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  • 2 weeks later...

Sharon, I too have had weird hormonal issues that are difficult to

sort out. I am 53, and was diagnosed about 2 years ago. About 1-

1/2 years ago, I stopped having periods rather precipitously. I had

none for around a year. Then about 6 months ago, I started having

them again. Not sure what is going on now--just weird and I wonder

every month what surprises are in store. Not sure if it is

leukemia, Gleevec or menopause. So, I love surprises, but not this

kind!

Vicki

>

> Sharon

>

> Hormones

>

> " Sharon States - I will have a 7-10 day period then it ends for a

few days and

> then starts back up again.I am scheduled for a tubal and

endometrial

> ablation for Sept 5th to hopefull help this issue.Anyone else

having

> menstration issues while on Gleevec? "

>

>

> You obviously have a good gyno and had all the options - hopefully

the ablation will work

> for you - ask your gyno about marina coil (Spelling) as well.

Sometimes this can work

> and other times not.

>

> Have you discussed with your cml specialist about going off or

keeping on glivec and other

> drugs while you have the procedure or if Hormone Replacement is

needed.

>

> Suggestion:

> Keep a diary - and take also to hospital and to both your gyno and

cml specialist.

>

> My Experience is one for the ages.

> Exactly like your own experience - very heavy periods - clotting -

aneamia - transfusions

> - and this went on for quite a few months. Until I collapsed thru

loss of blood - or the blood

> just could not generate itself quickly enough. Raced to hospital -

had a radical hysterectomy.

> The blood was also leaching into stomach and other cavaties in the

body sometime prior to

> actually this stage, where specialists vacuumed I suppose for a

better word - all the blood that

> was left. Many transfusions later and here I am. I was off

glivec for 14 days - like a giant detox.

>

> Did glivec cause the hormone problems - I would state yes -

however all the specialists think

> it is a combination of Age - CML and Glivec - no-one seems to be

able to confirm - but my experience

> is that glivec is more than an incidental culprit.

>

> Many women of all ages are reporting hormonal problems and perid

issues - some have had ablations,

> other procedures, and a few like myself the option taken out of

hands to save life and limb.

>

> So do not take hormone and your bleeding problems lightly as there

can be consequences if you do.

> I was just very lucky.

>

> Best thing you can do is have your CML specialist and gyno

specialist be able to share care your issue

>

> Hope you are feeling better soon and the ablation does the trick.

>

> Sue

>

>

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-I have had the same problems now for the past year. I finally went

to see by gyn. on Monday and he wants me to have my progesterone

checked, I am only 35 so I am hoping that this is not the beginning

of menopause!

e

- In , " vickistu " <vickistu@...> wrote:

>

> Sharon, I too have had weird hormonal issues that are difficult to

> sort out. I am 53, and was diagnosed about 2 years ago. About 1-

> 1/2 years ago, I stopped having periods rather precipitously. I had

> none for around a year. Then about 6 months ago, I started having

> them again. Not sure what is going on now--just weird and I wonder

> every month what surprises are in store. Not sure if it is

> leukemia, Gleevec or menopause. So, I love surprises, but not this

> kind!

>

> Vicki

>

>

> >

> > Sharon

> >

> > Hormones

> >

> > " Sharon States - I will have a 7-10 day period then it ends for a

> few days and

> > then starts back up again.I am scheduled for a tubal and

> endometrial

> > ablation for Sept 5th to hopefull help this issue.Anyone else

> having

> > menstration issues while on Gleevec? "

> >

> >

> > You obviously have a good gyno and had all the options -

hopefully

> the ablation will work

> > for you - ask your gyno about marina coil (Spelling) as well.

> Sometimes this can work

> > and other times not.

> >

> > Have you discussed with your cml specialist about going off or

> keeping on glivec and other

> > drugs while you have the procedure or if Hormone Replacement is

> needed.

> >

> > Suggestion:

> > Keep a diary - and take also to hospital and to both your gyno

and

> cml specialist.

> >

> > My Experience is one for the ages.

> > Exactly like your own experience - very heavy periods - clotting -

> aneamia - transfusions

> > - and this went on for quite a few months. Until I collapsed

thru

> loss of blood - or the blood

> > just could not generate itself quickly enough. Raced to

hospital -

> had a radical hysterectomy.

> > The blood was also leaching into stomach and other cavaties in

the

> body sometime prior to

> > actually this stage, where specialists vacuumed I suppose for a

> better word - all the blood that

> > was left. Many transfusions later and here I am. I was off

> glivec for 14 days - like a giant detox.

> >

> > Did glivec cause the hormone problems - I would state yes -

> however all the specialists think

> > it is a combination of Age - CML and Glivec - no-one seems to be

> able to confirm - but my experience

> > is that glivec is more than an incidental culprit.

> >

> > Many women of all ages are reporting hormonal problems and perid

> issues - some have had ablations,

> > other procedures, and a few like myself the option taken out of

> hands to save life and limb.

> >

> > So do not take hormone and your bleeding problems lightly as

there

> can be consequences if you do.

> > I was just very lucky.

> >

> > Best thing you can do is have your CML specialist and gyno

> specialist be able to share care your issue

> >

> > Hope you are feeling better soon and the ablation does the trick.

> >

> > Sue

> >

> >

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