RE: Uncomfortable sex question

[Guest guest]

Yes Neil, although I am madly in love with my husband after CML diagnosis the

same thing happens to me. I used to be in the mood quite often, but now I'm

either too tired,nauseas, or headache. Because I love my husband so much I try

hard to force myself for his sake. I am very attracted to him I think its the

CML and meds. If u find a secret please share the info.

Good Luck.

Peggy Becker

Connected by MOTOBLURâ„¢ on T-Mobile

[ ] Uncomfortable sex question

Before CML my wife and I used to perform our marital relations quite often.

Now I am hardly ever in the mood, and often find that I am faking the mood

for my wife's sake but she can usually tell I'm not really into it.

I'm thinking it is probably because I almost always have some degree of

nausea and am pretty exhausted by the time I get home from work.

Does anyone else struggle with this? Are there any ways of coping with it?

[Guest guest]

Hi Neal ,here's what I know and have been through. I do not know your age or

meds. I am on 600 Gleevec I think that the meds reduce your testosterone .I

don't know how you work,I need my 2 hour nap.I had no desire for about 4

years,during those years tired, nausea,my wife did not pursue.Hers is where A

lot of understanding comes in.You know your condition pace yourself,you are not

the same man with CML.

dx 05, 600 Gleevec ,69 years ,Married 20 years

Good luck this subject has been real Quiet

[Guest guest]

I turned 30 last month.

I work because I have to. I'm the sole breadwinner, and SSI pays peanuts. I

switched to Sprycel and it is a lot easier to make it through the day, but I

am still out of commission by 8, which happens to also be the kids' bedtime.

Re: [ ] Uncomfortable sex question

Hi Neal ,here's what I know and have been through. I do not know your age or

meds. I am on 600 Gleevec I think that the meds reduce your testosterone .I

don't know how you work,I need my 2 hour nap.I had no desire for about 4

years,during those years tired, nausea,my wife did not pursue.Hers is where

A

lot of understanding comes in.You know your condition pace yourself,you are

not

the same man with CML.

dx 05, 600 Gleevec ,69 years ,Married 20 years

Good luck this subject has been real Quiet

[Guest guest]

my family doc has me on a low dose of testosterone I feel great and it really

helps in that department. it also helps me stay lean and retain muscle.Even

before the testosterone I really had a pretty normal drive.

________________________________

From: Neal <nwatson@...>

Sent: Mon, September 27, 2010 5:01:04 PM

Subject: [ ] Uncomfortable sex question

 

Before CML my wife and I used to perform our marital relations quite often.

Now I am hardly ever in the mood, and often find that I am faking the mood

for my wife's sake but she can usually tell I'm not really into it.

I'm thinking it is probably because I almost always have some degree of

nausea and am pretty exhausted by the time I get home from work.

Does anyone else struggle with this? Are there any ways of coping with it?

[Guest guest]

Gleevec has been shown to lower testosterone in men and mess with women's

hormones as well so you may want to discuss getting your hormones checked with

your doctor. There are several men who use a testosterone patch and find it

very helpful.

Tracey

[Guest guest]

Thanks. I'll have to ask my doctor about that when I see her next.

Re: [ ] Uncomfortable sex question

Gleevec has been shown to lower testosterone in men and mess with women's

hormones as well so you may want to discuss getting your hormones checked

with your doctor. There are several men who use a testosterone patch and

find it very helpful.

Tracey

[Guest guest]

HI Neal,

I have had similar problems. I have posted about this occasionally

and never gotten a response. Nice to see that there is some response

here :-)

At this point, 5.5 years after dx, things are getting better again. I

think there is a combination of issues at play:

1) I agree, despite a lack of research, that the drugs do affect our

hormones; 2) fatigue is an issue even when you don't have CML, even

more when it is drug induced (I take a nap every day); 3) there is a

worry, especially at the beginning, about fragility of the person

with CML (my husband was afraid i would break for a really long time -

i got very thin prior to dx);

4) for me there was an issue of hyper sensitivity, which continues

(though not as bad) - hard for me to bear the weight of an arm or leg

that is placed " wrong " ; 5) the more you have sex, the easier it is to

have sex; the less you have sex the easier it is to NOT have sex.

Having a more normal sex life is an ongoing process. I have found

that scheduling sex is a good start (I know - not romantic, but....).

Also,

starting to fool around LONG before bed time (nothing X rated - with

kids around you can sneak a kiss, a grope, a whispered endearment).

It is OK to fake it - as Shakespeare said (Romeo and t) " with

eating comes the appetite " , the important thing is to get started and

accept that you don't have to " do it " for it to " count " as being

intimate.

PS This is not just a CML issue. As we age sex changes too. I think

things just things just get accelerated with any serious disease.

Many drugs have reduced libido as a side effect (officially or not)

Best,

Leah

[Guest guest]

Hi guys

I seem to have this problem all the time. A combination of Glivec (now at

600mg) together with Levlen ED (the pill), my libido seems to be at a big

fat zero. My husband and I used to have great sex, but it's all flopped now,

not that he doesn't want to. I find it difficult, for the reasons stated

below - fatigue, hyper sensitivity (the weight of an arm or leg in the wrong

place is a huge no-no (and even a finger nail in the wrong place makes me

freak and my skin broken), fragility (mainly extremely thin skin).

I agree with your statement, the more sex you have the easier it gets. It's

too easy to take the other, " easier " option of no sex.

My skin has become so thin that I bleed and become very sore after sex.

I was diagnosed in November 2005 and it was fine for the first couple of

years, so I am the opposite to you.

I keep telling him that he has to treat me with " kid gloves " . He said " I

can't even touch you now " . That's not quite true, though I will not let

anyone touch my legs, shins in particular because my skin is so thin there.

I wish there was a simple answer to this because it IS an issue. A healthy

relationship needs sex! :-)

Jackie

_____

From: [mailto: ] On Behalf Of Leah

Sent: Wednesday, 29 September 2010 2:18 PM

Subject: [ ] Re: Uncomfortable sex question

HI Neal,

I have had similar problems. I have posted about this occasionally

and never gotten a response. Nice to see that there is some response

here :-)

At this point, 5.5 years after dx, things are getting better again. I

think there is a combination of issues at play:

1) I agree, despite a lack of research, that the drugs do affect our

hormones; 2) fatigue is an issue even when you don't have CML, even

more when it is drug induced (I take a nap every day); 3) there is a

worry, especially at the beginning, about fragility of the person

with CML (my husband was afraid i would break for a really long time -

i got very thin prior to dx);

4) for me there was an issue of hyper sensitivity, which continues

(though not as bad) - hard for me to bear the weight of an arm or leg

that is placed " wrong " ; 5) the more you have sex, the easier it is to

have sex; the less you have sex the easier it is to NOT have sex.

Having a more normal sex life is an ongoing process. I have found

that scheduling sex is a good start (I know - not romantic, but....).

Also,

starting to fool around LONG before bed time (nothing X rated - with

kids around you can sneak a kiss, a grope, a whispered endearment).

It is OK to fake it - as Shakespeare said (Romeo and t) " with

eating comes the appetite " , the important thing is to get started and

accept that you don't have to " do it " for it to " count " as being

intimate.

PS This is not just a CML issue. As we age sex changes too. I think

things just things just get accelerated with any serious disease.

Many drugs have reduced libido as a side effect (officially or not)

Best,

Leah