Question

[Guest guest]

Have you ever came right out and asked the doctor what stage your mom

is??? Ingrid

> Oh I totally understand that, not getting a straight answer. My

mom's cancer

> was found in Nov of 04 and they have never told us the stage. She

can not

> have the tumor removed, Surgeon said her pelvic area was full and

even after

> radiation and chemo, there was no viable tissue. Her CEA when she

started was

> 39.5 and now its 3.4. I don't know what to expect and I hate that.

>

>

>

>

[Guest guest]

Have you ever came right out and asked the doctor what stage your mom

is??? Ingrid

> Oh I totally understand that, not getting a straight answer. My

mom's cancer

> was found in Nov of 04 and they have never told us the stage. She

can not

> have the tumor removed, Surgeon said her pelvic area was full and

even after

> radiation and chemo, there was no viable tissue. Her CEA when she

started was

> 39.5 and now its 3.4. I don't know what to expect and I hate that.

>

>

>

>

[Guest guest]

No matter what the stage is there is always hope. Miricles do happen. I

am Praying for your mom. Ingrid

> Yea and I haven't got a straight answer and I don't think my mom

really wants

> to know. She had a PET scan a few months ago, and it showed nothing

in liver

> or lungs, they only removed on lymph node when they did the

colostomy, it was

> in her groin area because it was enlarged and it was positive for

cancer. Im

> assuming though if you have rectal cancer that is so large that it

can not be

> removed, that would be stage 4 but not real sure.

>

>

>

[Guest guest]

No matter what the stage is there is always hope. Miricles do happen. I

am Praying for your mom. Ingrid

> Yea and I haven't got a straight answer and I don't think my mom

really wants

> to know. She had a PET scan a few months ago, and it showed nothing

in liver

> or lungs, they only removed on lymph node when they did the

colostomy, it was

> in her groin area because it was enlarged and it was positive for

cancer. Im

> assuming though if you have rectal cancer that is so large that it

can not be

> removed, that would be stage 4 but not real sure.

>

>

>

[Guest guest]

Absolutely - I'm surprised no one has responded yet! Take a look at the

archives (message 104126, for example).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On

Behalf Of JoAnne W

Just wondering for the women in the group; does any one symptom get worse

before during and after your monthly cycle. I get the URQ pain so bad

through my cycles and feel very run down.

[Guest guest]

Absolutely - I'm surprised no one has responded yet! Take a look at the

archives (message 104126, for example).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On

Behalf Of JoAnne W

Just wondering for the women in the group; does any one symptom get worse

before during and after your monthly cycle. I get the URQ pain so bad

through my cycles and feel very run down.

[Guest guest]

Absolutely - I'm surprised no one has responded yet! Take a look at the

archives (message 104126, for example).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On

Behalf Of JoAnne W

Just wondering for the women in the group; does any one symptom get worse

before during and after your monthly cycle. I get the URQ pain so bad

through my cycles and feel very run down.

[Guest guest]

JoAnne,

I think pretty much all of us women have had that problem. I finally took care

of that problem a few years ago and had a hysterectomy. I got so so so extra

sick along with infections. I believe one of our dr onsite said something to the

effect that it is a well documented but less understood fact that women with

autoimmune diseases worsen during our cycles. My UC would also flare like crazy.

The itching was worse, my fibromyalgia was worse. I was 47 at the time and they

left in my ovaries, so I am not too bothered by menopause issues. I have no

advice to help you with it though. Take care, Cheryl in ID 49 PSC/UC, etc.

Question

> Just wondering for the women in the group; does any one symptom get worse

before during and after your monthly cycle. I get the URQ pain so bad through

my cycles and feel very run down.

>  

> > JoAnne, PSC 2008

> Riverside, CA

>

>

>

>

[Guest guest]

JoAnne,

I think pretty much all of us women have had that problem. I finally took care

of that problem a few years ago and had a hysterectomy. I got so so so extra

sick along with infections. I believe one of our dr onsite said something to the

effect that it is a well documented but less understood fact that women with

autoimmune diseases worsen during our cycles. My UC would also flare like crazy.

The itching was worse, my fibromyalgia was worse. I was 47 at the time and they

left in my ovaries, so I am not too bothered by menopause issues. I have no

advice to help you with it though. Take care, Cheryl in ID 49 PSC/UC, etc.

Question

> Just wondering for the women in the group; does any one symptom get worse

before during and after your monthly cycle. I get the URQ pain so bad through

my cycles and feel very run down.

>  

> > JoAnne, PSC 2008

> Riverside, CA

>

>

>

>

[Guest guest]

JoAnne,

Obviously I do not have any personal

experience with this (as I am a guy), but there is something else I would like

to tell you. A few months ago another woman (I don't remember who) said that

she had problems to get through her shift at work without getting URQ pain. Someone

(again I don't remember who) advised her to make sure to be drinking all the

time and stop drinking coffee during work hours. She then wrote back a little

while later that it really helped her. If your problems are worse at night,

maybe you should drink an extra glass of water before you go to sleep (and refrain

from drinking coffee before you go to sleep, if you do so now). In my humble

opinion hydration is very important for us PSC patients. The best thing is that

the worst complication from drinking extra water is that you might have to make

an extra pit stop during the night.

Does anyone know if the monthly cycle

influences the hydration level?

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of JoAnne W

Sent: Monday, August 04, 2008

23:50

To:

Subject: Question

Just

wondering for the women in the group; does any one symptom get worse

before during and after your monthly cycle. I get the URQ pain so bad

through my cycles and feel very run down.

I have had

the URQ pain for a week now... most of the time it is a dull pain and it get

really bad at night. I don't have fever or chills, just the pain

Since I

have just been diagnosed I don¢t really know what to expect, my doctor¢s

don¢t have much information, they said when I turn yellow or get fever,

chills or severe pain then call them and get in right away.

I go in

every six month check up with blood work. So far my blood work is good. I

also get ERCP and MRCP every year to check the status of the disease.

I would

appreciate any information.

JoAnne,

PSC 2008

Riverside, CA

[Guest guest]

JoAnne,

Obviously I do not have any personal

experience with this (as I am a guy), but there is something else I would like

to tell you. A few months ago another woman (I don't remember who) said that

she had problems to get through her shift at work without getting URQ pain. Someone

(again I don't remember who) advised her to make sure to be drinking all the

time and stop drinking coffee during work hours. She then wrote back a little

while later that it really helped her. If your problems are worse at night,

maybe you should drink an extra glass of water before you go to sleep (and refrain

from drinking coffee before you go to sleep, if you do so now). In my humble

opinion hydration is very important for us PSC patients. The best thing is that

the worst complication from drinking extra water is that you might have to make

an extra pit stop during the night.

Does anyone know if the monthly cycle

influences the hydration level?

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of JoAnne W

Sent: Monday, August 04, 2008

23:50

To:

Subject: Question

Just

wondering for the women in the group; does any one symptom get worse

before during and after your monthly cycle. I get the URQ pain so bad

through my cycles and feel very run down.

I have had

the URQ pain for a week now... most of the time it is a dull pain and it get

really bad at night. I don't have fever or chills, just the pain

Since I

have just been diagnosed I don¢t really know what to expect, my doctor¢s

don¢t have much information, they said when I turn yellow or get fever,

chills or severe pain then call them and get in right away.

I go in

every six month check up with blood work. So far my blood work is good. I

also get ERCP and MRCP every year to check the status of the disease.

I would

appreciate any information.

JoAnne,

PSC 2008

Riverside, CA

[Guest guest]

Women become more dehydrated around their monthly cycle due to the

increase in tissue fluid volume and durring their cycle because of

loosing blood. I love coffee and don't like the idea of caffine

withdrawal; therefore, I found that using skim milk decreased my URQ

pain significantly. For me the pain appears to be brought on a lot

of the times by fat and sugar intake. Sugar includes simple carbs.

>

> JoAnne,

>

>

>

> Obviously I do not have any personal experience with this (as I am

a guy),

> but there is something else I would like to tell you. A few months

ago

> another woman (I don't remember who) said that she had problems to

get

> through her shift at work without getting URQ pain. Someone (again

I don't

> remember who) advised her to make sure to be drinking all the time

and stop

> drinking coffee during work hours. She then wrote back a little

while later

> that it really helped her. If your problems are worse at night,

maybe you

> should drink an extra glass of water before you go to sleep (and

refrain

> from drinking coffee before you go to sleep, if you do so now). In

my humble

> opinion hydration is very important for us PSC patients. The best

thing is

> that the worst complication from drinking extra water is that you

might have

> to make an extra pit stop during the night.

>

>

>

> Does anyone know if the monthly cycle influences the hydration

level?

>

>

>

> Regards,

>

>

>

> Chaim Boermeester, Israel

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of JoAnne W

> Sent: Monday, August 04, 2008 23:50

> To:

> Subject: Question

>

>

>

>

> Just wondering for the women in the group; does any one symptom get

worse

> before during and after your monthly cycle. I get the URQ pain so

bad

> through my cycles and feel very run down.

>

>

>

> I have had the URQ pain for a week now... most of the time it is a

dull pain

> and it get really bad at night. I don't have fever or chills, just

the pain

>

>

>

>

> Since I have just been diagnosed I don?t really know what to

expect, my

> doctor?s don?t have much information, they said when I turn yellow

or get

> fever, chills or severe pain then call them and get in right away.

>

>

>

> I go in every six month check up with blood work. So far my blood

work is

> good. I also get ERCP and MRCP every year to check the status of the

> disease.

>

>

>

> I would appreciate any information.

>

>

>

> JoAnne, PSC 2008

>

> Riverside, CA

>

[Guest guest]

Women become more dehydrated around their monthly cycle due to the

increase in tissue fluid volume and durring their cycle because of

loosing blood. I love coffee and don't like the idea of caffine

withdrawal; therefore, I found that using skim milk decreased my URQ

pain significantly. For me the pain appears to be brought on a lot

of the times by fat and sugar intake. Sugar includes simple carbs.

>

> JoAnne,

>

>

>

> Obviously I do not have any personal experience with this (as I am

a guy),

> but there is something else I would like to tell you. A few months

ago

> another woman (I don't remember who) said that she had problems to

get

> through her shift at work without getting URQ pain. Someone (again

I don't

> remember who) advised her to make sure to be drinking all the time

and stop

> drinking coffee during work hours. She then wrote back a little

while later

> that it really helped her. If your problems are worse at night,

maybe you

> should drink an extra glass of water before you go to sleep (and

refrain

> from drinking coffee before you go to sleep, if you do so now). In

my humble

> opinion hydration is very important for us PSC patients. The best

thing is

> that the worst complication from drinking extra water is that you

might have

> to make an extra pit stop during the night.

>

>

>

> Does anyone know if the monthly cycle influences the hydration

level?

>

>

>

> Regards,

>

>

>

> Chaim Boermeester, Israel

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of JoAnne W

> Sent: Monday, August 04, 2008 23:50

> To:

> Subject: Question

>

>

>

>

> Just wondering for the women in the group; does any one symptom get

worse

> before during and after your monthly cycle. I get the URQ pain so

bad

> through my cycles and feel very run down.

>

>

>

> I have had the URQ pain for a week now... most of the time it is a

dull pain

> and it get really bad at night. I don't have fever or chills, just

the pain

>

>

>

>

> Since I have just been diagnosed I don?t really know what to

expect, my

> doctor?s don?t have much information, they said when I turn yellow

or get

> fever, chills or severe pain then call them and get in right away.

>

>

>

> I go in every six month check up with blood work. So far my blood

work is

> good. I also get ERCP and MRCP every year to check the status of the

> disease.

>

>

>

> I would appreciate any information.

>

>

>

> JoAnne, PSC 2008

>

> Riverside, CA

>

[Guest guest]

I mentioned coffee since caffeine is diuretic. If you like to drink (a

lot of) coffee you will need to compensate with drinking lots of other

fluids.

[Guest guest]

I mentioned coffee since caffeine is diuretic. If you like to drink (a

lot of) coffee you will need to compensate with drinking lots of other

fluids.

[Guest guest]

Yes, fatigue and nausea.

>

> Absolutely - I'm surprised no one has responded yet! Take a look

at the

> archives (message 104126, for example).

>

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

>

>

> ________________________________

>

> From: [mailto:psc-

support ] On

> Behalf Of JoAnne W

>

>

> Just wondering for the women in the group; does any one symptom

get worse

> before during and after your monthly cycle. I get the URQ pain so

bad

> through my cycles and feel very run down.

>

[Guest guest]

Yes, fatigue and nausea.

>

> Absolutely - I'm surprised no one has responded yet! Take a look

at the

> archives (message 104126, for example).

>

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

>

>

> ________________________________

>

> From: [mailto:psc-

support ] On

> Behalf Of JoAnne W

>

>

> Just wondering for the women in the group; does any one symptom

get worse

> before during and after your monthly cycle. I get the URQ pain so

bad

> through my cycles and feel very run down.

>

[Guest guest]

Yes, fatigue and nausea.

>

> Absolutely - I'm surprised no one has responded yet! Take a look

at the

> archives (message 104126, for example).

>

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

>

>

> ________________________________

>

> From: [mailto:psc-

support ] On

> Behalf Of JoAnne W

>

>

> Just wondering for the women in the group; does any one symptom

get worse

> before during and after your monthly cycle. I get the URQ pain so

bad

> through my cycles and feel very run down.

>

[Guest guest]

When I went to the hosp. the Dr there told me to use Nasa-nex for three days.. I did and now can't smell anything. told me he has lost his since of smell from spray and now me.. I thought he was nuts. Not any more. I can't smell my perfumecakes nothin so my advise with sprays go easy. I used it three times a day for three days.. NO MORE.. I know y'all do know itis probably just me and my weird self..  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Has anyone here ever tried the Mucinex Nasal Spray?  (intead of taking it by mouth?)I bought some today at Kroger and tried it when I got home.  I thought I would try it so I wouldn't have to take the Mucinex-D so much.My impression is this:  It reminded me of the Vicks Vapor Rub smell.Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Jane...does it work???

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Question

Has anyone here ever tried the Mucinex Nasal Spray? (intead of taking it by mouth?)

I bought some today at Kroger and tried it when I got home. I thought I would try it so I wouldn't have to take the Mucinex-D so much.

My impression is this: It reminded me of the Vicks Vapor Rub smell.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]



Hi- I u se Nasonex twice a day and have used it that way for over a year and I still have my sense of smell. What interfers with smelling for me is the oxygen. I have a hard time smelling what I am cooking if I'm in another room because of the oxygen in my nose. Joyce Rudy

Re: Question

When I went to the hosp. the Dr there told me to use Nasa-nex for three days.. I did and now can't smell anything. told me he has lost his since of smell from spray and now me.. I thought he was nuts. Not any more. I can't smell my perfume

cakes nothin so my advise with sprays go easy. I used it three times a day for three days.. NO MORE.. I know y'all do know it

is probably just me and my�weird�self..�

Love & Prayers, Peggy

Florida, �IPF/UIP 2004

"I believe that friends are quiet angels�who lift us to our feet,�

when our wings�have trouble remembering how to fly."�

Has anyone here ever tried the Mucinex Nasal Spray?� (intead of taking it by mouth?)

I bought some today at Kroger and tried it when I got home.� I thought I would try it so I wouldn't have to take the Mucinex-D so much.

My impression is this:� It reminded me of the Vicks Vapor Rub smell.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Mama Sher,

It seems to be working, I guess. I think I will know more tomorrow. The worst problems that I have are with my sinuses so I am hoping that this will help. I have taken too much Mucinex-D this year and it is so expensive.

My chest congestion can be alleviated by neubulizing, which is what I am doing at this time. No, I am not sick, just some little twinges in my lungs when I breathe.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Jane...does it work???> > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Question> > > > Has anyone here ever tried the Mucinex Nasal Spray? (intead of taking it by mouth?)> > I bought some today at Kroger and tried it when I got home. I thought I would try it so I wouldn't have to take the Mucinex-D so much.> > My impression is this: It reminded me of the Vicks Vapor Rub smell.> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Thanks Jane...my sinuses have been so aggravating...I never used to have sinus problems and now it's regularly.

Yesterday I used Alka Seltzer Plus about 4 times and it helped a lot. Today I'm breathing through my nose. I also use Ayr products.

I couldn't sleep at night due to plugged nose.

If this works, let me know. I've used other Mucinex products and like those.

I like the smell of Vapor Rub. lol.

I know you are looking forward to going to Orlando. You lucky girl you. Take pictures!

Love

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Question> > > > Has anyone here ever tried the Mucinex Nasal Spray? (intead of taking it by mouth?)> > I bought some today at Kroger and tried it when I got home. I thought I would try it so I wouldn't have to take the Mucinex-D so much.> > My impression is this: It reminded me of the Vicks Vapor Rub smell.> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

thanx, MB

Subject: Re: questionTo: Breathe-Support Date: Friday, January 30, 2009, 3:10 PM

Jim,

My experience with using mechanical suction is limited to patients with a tracheostomy. Using this type of suction in your case would probably not be terribly appropriate. You would need to bring mucus up to a certain point to have it be suctioned or you're correct what you end up doing is as invasive as a bronchoscopy.

Are you running a fever? The negative sputum culture from 48 hours ago is excellent but don't let things go too long without being checked again. Hopefully you're at the end of a virus. Keep up the NAC and lots of water. Keep that mucus as thin as possible and keep us posted!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: james wallman <james_wallman@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 30, 2009 5:36:24 PMSubject: question

this is one of those subjects that is rather unpleasant and so is not talked about much, but I need info/advice. ........mucus. .......is my worst enemy. When I can't cough it up, keep coughing, sats drop, very sob, very weak, feel like passing out. This condition hasn't hit me for some time. I use liquid acetylsysteine 3 times a day and drink lots of water. (I've found that makes alot of difference) My wife works at the hospital and thinks I should go be seen, and I think that's a waste of time....and lots of money. I did a sputum sample 2 days ago and they found no reason to give me antibiotics. I think this is associated with a virus going around though I have no other symptoms.

Question: has anyone heard of or experienced mechanical suction? I read that term on the fact sheet that comes with the acetylsysteine a long time ago. Is that something they do? Sounds like a bronch to me, conjures up some not too pleasant pictures in my head........ I think todays session is winding down. But for future reference... ....Thank you!!!!

jim IPF 05

alaska

[Guest guest]

thanx, MB

Subject: Re: questionTo: Breathe-Support Date: Friday, January 30, 2009, 3:10 PM

Jim,

My experience with using mechanical suction is limited to patients with a tracheostomy. Using this type of suction in your case would probably not be terribly appropriate. You would need to bring mucus up to a certain point to have it be suctioned or you're correct what you end up doing is as invasive as a bronchoscopy.

Are you running a fever? The negative sputum culture from 48 hours ago is excellent but don't let things go too long without being checked again. Hopefully you're at the end of a virus. Keep up the NAC and lots of water. Keep that mucus as thin as possible and keep us posted!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: james wallman <james_wallman@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 30, 2009 5:36:24 PMSubject: question

this is one of those subjects that is rather unpleasant and so is not talked about much, but I need info/advice. ........mucus. .......is my worst enemy. When I can't cough it up, keep coughing, sats drop, very sob, very weak, feel like passing out. This condition hasn't hit me for some time. I use liquid acetylsysteine 3 times a day and drink lots of water. (I've found that makes alot of difference) My wife works at the hospital and thinks I should go be seen, and I think that's a waste of time....and lots of money. I did a sputum sample 2 days ago and they found no reason to give me antibiotics. I think this is associated with a virus going around though I have no other symptoms.

Question: has anyone heard of or experienced mechanical suction? I read that term on the fact sheet that comes with the acetylsysteine a long time ago. Is that something they do? Sounds like a bronch to me, conjures up some not too pleasant pictures in my head........ I think todays session is winding down. But for future reference... ....Thank you!!!!

jim IPF 05

alaska