Re: transtracheal oxygen/Cyclophosphamide or Cytoxan

[Guest guest]

Sharon

There are ALS forums which could provide more real experiences. However,

I think you will find that people react very differently. You do need to

be sure no one is in danger as a result of his behavior. As to the beer,

if he can't dress, how is the beer getting there to him? Now, does he

have a right if he wants to drink every hour. At this point, probably

yes, as its self medicating. However, that doesn't give him the right to

mistreat others. The disease, the drinking, can all be used as an excuse

for behavior but they still don't justify it. Likely that no one can

change his attitude, but others can change how they deal with it and

react to it.

For obvious reasons, depression is very common with ALS. He's

experiencing it severely it sounds like. His response is drinking and

anger. He needs counseling but I seriously doubt if he'd get it.

Therefore, I would strongly advise it for the wife and son. You express

worry over the son's thoughts and final time with him. Counseling can

help the son work through that and understand the anger isn't directed

at him while also helping him deal with any feelings of guilt.

For each of us talking about how bad PF is, we need to remember diseases

like ALS. Still the worse ones to me are those that impact our thinking,

such as Alzheimers. But, ALS not only has a short morbidity but a

tremendous loss of function and pain.

> >

> >

> > From: Beverley Joy sparrow4@

> > Subject: Re: Re: transtracheal

> oxygen/Cyclophospha mide or Cytoxan

> > To: Breathe-Support@ yahoogroups. com

> > Date: Saturday, May 16, 2009, 6:28 PM

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > I am taking Prednisone. I have gained 32 lbs in just a few months. I

> had a blood test yesterday to see if it I need my thyroid meds

changed.

> I hope that she tested for diabetes too. I am one of the people that

> Prednisone helps so my doctor sort of said take it or die. e also told

> me that the side affects can be treated. If he had to put me on Imuran

> those side affects can't. So I get I'll be fat and live awhile longer.

> Beverley Joy, 70, IPF, 1-09Â Idaho

> > Â

> >

> > Re: transtracheal oxygen/Cyclophospha

mide

> or Cytoxan

> >

> >

> >

> >

> >

> > Thanks to Bruce and Beth for some info on TTO. I am

> interested in pursuing it with my doc.

> >

> > MB, I am seeing Dr. on at Duke.

> >

> > On another matter, he is considering putting me on the drug Cytoxan

> for 4 to 6 months because the cellcept  (I’m on max

dose of

> 3000 mg per day) doesn’t seem to be helping me

anymore.Â

> It’s a drug given for cancer immunotherapy. I think

he wants

> me to get off Prednisone. Anyone taking that drug? Â

What

> side effects have you had? Has it helped you?

> > Thanks.

> > Sue D.

> > 63 yr old, Fibrotic NSIP dx 9/07, VA

> >

>

[Guest guest]

thanks bruce ,as always you are there for those who need help

sharon p asthma ph 2008

Subject: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 5:06 PM

SharonThere are ALS forums which could provide more real experiences. However,I think you will find that people react very differently. You do need tobe sure no one is in danger as a result of his behavior. As to the beer,if he can't dress, how is the beer getting there to him? Now, does hehave a right if he wants to drink every hour. At this point, probablyyes, as its self medicating. However, that doesn't give him the right tomistreat others. The disease, the drinking, can all be used as an excusefor behavior but they still don't justify it. Likely that no one canchange his attitude, but others can change how they deal with it andreact to it.For obvious reasons, depression is very common with ALS. He'sexperiencing it severely it sounds like. His response is drinking andanger. He needs counseling but I seriously doubt if he'd get it.Therefore, I would strongly advise it for the wife

and son. You expressworry over the son's thoughts and final time with him. Counseling canhelp the son work through that and understand the anger isn't directedat him while also helping him deal with any feelings of guilt.For each of us talking about how bad PF is, we need to remember diseaseslike ALS. Still the worse ones to me are those that impact our thinking,such as Alzheimers. But, ALS not only has a short morbidity but atremendous loss of function and pain.> >> >> > From: Beverley Joy sparrow4@> > Subject: Re: Re: transtracheal> oxygen/Cyclophospha mide or Cytoxan> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, May 16, 2009, 6:28 PM> >> >> >> >> >> >> >> >> >> > I am taking Prednisone. I have gained 32 lbs in just a few months. I> had a blood test yesterday to see if it I need my thyroid medschanged.> I hope that she tested for diabetes too. I am one of the

people that> Prednisone helps so my doctor sort of said take it or die. e also told> me that the side affects can be treated. If he had to put me on Imuran> those side affects can't. So I get I'll be fat and live awhile longer.> Beverley Joy, 70, IPF, 1-09 Idaho> > Â> >> > Re: transtracheal oxygen/Cyclophosphamide> or Cytoxan> >> >> >> >> >> > Thanks to Bruce and Beth for some info on TTO. I am> interested in pursuing it with my doc.> >> > MB, I am seeing Dr. on at Duke.> >> > On another matter, he is considering putting me on the drug Cytoxan> for 4 to 6

months because the cellcept  (I’m on maxdose of> 3000 mg per day) doesn’t seem to be helping meanymore.Â> It’s a drug given for cancer immunotherapy. I thinkhe wants> me to get off Prednisone. Anyone taking that drug? ÂWhat> side effects have you had? Has it helped you?> > Thanks.> > Sue D.> > 63 yr old, Fibrotic NSIP dx 9/07, VA> >>

[Guest guest]

thanks bruce ,as always you are there for those who need help

sharon p asthma ph 2008

Subject: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 5:06 PM

SharonThere are ALS forums which could provide more real experiences. However,I think you will find that people react very differently. You do need tobe sure no one is in danger as a result of his behavior. As to the beer,if he can't dress, how is the beer getting there to him? Now, does hehave a right if he wants to drink every hour. At this point, probablyyes, as its self medicating. However, that doesn't give him the right tomistreat others. The disease, the drinking, can all be used as an excusefor behavior but they still don't justify it. Likely that no one canchange his attitude, but others can change how they deal with it andreact to it.For obvious reasons, depression is very common with ALS. He'sexperiencing it severely it sounds like. His response is drinking andanger. He needs counseling but I seriously doubt if he'd get it.Therefore, I would strongly advise it for the wife

and son. You expressworry over the son's thoughts and final time with him. Counseling canhelp the son work through that and understand the anger isn't directedat him while also helping him deal with any feelings of guilt.For each of us talking about how bad PF is, we need to remember diseaseslike ALS. Still the worse ones to me are those that impact our thinking,such as Alzheimers. But, ALS not only has a short morbidity but atremendous loss of function and pain.> >> >> > From: Beverley Joy sparrow4@> > Subject: Re: Re: transtracheal> oxygen/Cyclophospha mide or Cytoxan> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, May 16, 2009, 6:28 PM> >> >> >> >> >> >> >> >> >> > I am taking Prednisone. I have gained 32 lbs in just a few months. I> had a blood test yesterday to see if it I need my thyroid medschanged.> I hope that she tested for diabetes too. I am one of the

people that> Prednisone helps so my doctor sort of said take it or die. e also told> me that the side affects can be treated. If he had to put me on Imuran> those side affects can't. So I get I'll be fat and live awhile longer.> Beverley Joy, 70, IPF, 1-09 Idaho> > Â> >> > Re: transtracheal oxygen/Cyclophosphamide> or Cytoxan> >> >> >> >> >> > Thanks to Bruce and Beth for some info on TTO. I am> interested in pursuing it with my doc.> >> > MB, I am seeing Dr. on at Duke.> >> > On another matter, he is considering putting me on the drug Cytoxan> for 4 to 6

months because the cellcept  (I’m on maxdose of> 3000 mg per day) doesn’t seem to be helping meanymore.Â> It’s a drug given for cancer immunotherapy. I thinkhe wants> me to get off Prednisone. Anyone taking that drug? ÂWhat> side effects have you had? Has it helped you?> > Thanks.> > Sue D.> > 63 yr old, Fibrotic NSIP dx 9/07, VA> >>

[Guest guest]

Okay, now I am talking to my own body - cease fire!!! GI dude's nurse just called and I have a hiatal hernia which will have to be fixed when the do my stomach surgery. And the front desk dropped the ball and didn't send my surgical referral over to the surgeon so another delay. Bruce said it isn't unusual for people to be angry and for that BRUCE THANK YOU! I was feeling stupid because I am angry. I am plain downright mad as (* & & . Every week it is something; a symptom, a new diagnoses, a new medicine. I am officially tired of it all. I AM TIRED! There is so much being thrown at me that I can't even begin to keep it all straight. But on a happier note, when I looked up the hernia thing it said that can cause heart attack like pain and constipation so maybe when they fix that a bunch of other things will be fixed too. Okay I'm done blowing up. Thanks for listening. Why does bad news always come when you are all alone?

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Hiatal Hernia today, Idaho

From: Bruce Moreland

Sent: Monday, May 18, 2009 3:06 PM

To: Breathe-Support

Subject: Re: transtracheal oxygen/Cyclophosphamide or Cytoxan

SharonThere are ALS forums which could provide more real experiences. However,I think you will find that people react very differently. You do need tobe sure no one is in danger as a result of his behavior. As to the beer,if he can't dress, how is the beer getting there to him? Now, does hehave a right if he wants to drink every hour. At this point, probablyyes, as its self medicating. However, that doesn't give him the right tomistreat others. The disease, the drinking, can all be used as an excusefor behavior but they still don't justify it. Likely that no one canchange his attitude, but others can change how they deal with it andreact to it.For obvious reasons, depression is very common with ALS. He'sexperiencing it severely it sounds like. His response is drinking andanger. He needs counseling but I seriously doubt if he'd get it.Therefore, I would strongly advise it for the wife and son. You expressworry over the son's thoughts and final time with him. Counseling canhelp the son work through that and understand the anger isn't directedat him while also helping him deal with any feelings of guilt.For each of us talking about how bad PF is, we need to remember diseaseslike ALS. Still the worse ones to me are those that impact our thinking,such as Alzheimers. But, ALS not only has a short morbidity but atremendous loss of function and pain.> >> >> > From: Beverley Joy sparrow4@> > Subject: Re: Re: transtracheal> oxygen/Cyclophospha mide or Cytoxan> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, May 16, 2009, 6:28 PM> >> >> >> >> >> >> >> >> >> > I am taking Prednisone. I have gained 32 lbs in just a few months. I> had a blood test yesterday to see if it I need my thyroid medschanged.> I hope that she tested for diabetes too. I am one of the people that> Prednisone helps so my doctor sort of said take it or die. e also told> me that the side affects can be treated. If he had to put me on Imuran> those side affects can't. So I get I'll be fat and live awhile longer.> Beverley Joy, 70, IPF, 1-09 Idaho> > Â> >> > Re: transtracheal oxygen/Cyclophosphamide> or Cytoxan> >> >> >> >> >> > Thanks to Bruce and Beth for some info on TTO. I am> interested in pursuing it with my doc.> >> > MB, I am seeing Dr. on at Duke.> >> > On another matter, he is considering putting me on the drug Cytoxan> for 4 to 6 months because the cellcept  (I’m on maxdose of> 3000 mg per day) doesn’t seem to be helping meanymore.Â> It’s a drug given for cancer immunotherapy. I thinkhe wants> me to get off Prednisone. Anyone taking that drug? ÂWhat> side effects have you had? Has it helped you?> > Thanks.> > Sue D.> > 63 yr old, Fibrotic NSIP dx 9/07, VA> >>

[Guest guest]

Okay, now I am talking to my own body - cease fire!!! GI dude's nurse just called and I have a hiatal hernia which will have to be fixed when the do my stomach surgery. And the front desk dropped the ball and didn't send my surgical referral over to the surgeon so another delay. Bruce said it isn't unusual for people to be angry and for that BRUCE THANK YOU! I was feeling stupid because I am angry. I am plain downright mad as (* & & . Every week it is something; a symptom, a new diagnoses, a new medicine. I am officially tired of it all. I AM TIRED! There is so much being thrown at me that I can't even begin to keep it all straight. But on a happier note, when I looked up the hernia thing it said that can cause heart attack like pain and constipation so maybe when they fix that a bunch of other things will be fixed too. Okay I'm done blowing up. Thanks for listening. Why does bad news always come when you are all alone?

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Hiatal Hernia today, Idaho

From: Bruce Moreland

Sent: Monday, May 18, 2009 3:06 PM

To: Breathe-Support

Subject: Re: transtracheal oxygen/Cyclophosphamide or Cytoxan

SharonThere are ALS forums which could provide more real experiences. However,I think you will find that people react very differently. You do need tobe sure no one is in danger as a result of his behavior. As to the beer,if he can't dress, how is the beer getting there to him? Now, does hehave a right if he wants to drink every hour. At this point, probablyyes, as its self medicating. However, that doesn't give him the right tomistreat others. The disease, the drinking, can all be used as an excusefor behavior but they still don't justify it. Likely that no one canchange his attitude, but others can change how they deal with it andreact to it.For obvious reasons, depression is very common with ALS. He'sexperiencing it severely it sounds like. His response is drinking andanger. He needs counseling but I seriously doubt if he'd get it.Therefore, I would strongly advise it for the wife and son. You expressworry over the son's thoughts and final time with him. Counseling canhelp the son work through that and understand the anger isn't directedat him while also helping him deal with any feelings of guilt.For each of us talking about how bad PF is, we need to remember diseaseslike ALS. Still the worse ones to me are those that impact our thinking,such as Alzheimers. But, ALS not only has a short morbidity but atremendous loss of function and pain.> >> >> > From: Beverley Joy sparrow4@> > Subject: Re: Re: transtracheal> oxygen/Cyclophospha mide or Cytoxan> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, May 16, 2009, 6:28 PM> >> >> >> >> >> >> >> >> >> > I am taking Prednisone. I have gained 32 lbs in just a few months. I> had a blood test yesterday to see if it I need my thyroid medschanged.> I hope that she tested for diabetes too. I am one of the people that> Prednisone helps so my doctor sort of said take it or die. e also told> me that the side affects can be treated. If he had to put me on Imuran> those side affects can't. So I get I'll be fat and live awhile longer.> Beverley Joy, 70, IPF, 1-09 Idaho> > Â> >> > Re: transtracheal oxygen/Cyclophosphamide> or Cytoxan> >> >> >> >> >> > Thanks to Bruce and Beth for some info on TTO. I am> interested in pursuing it with my doc.> >> > MB, I am seeing Dr. on at Duke.> >> > On another matter, he is considering putting me on the drug Cytoxan> for 4 to 6 months because the cellcept  (I’m on maxdose of> 3000 mg per day) doesn’t seem to be helping meanymore.Â> It’s a drug given for cancer immunotherapy. I thinkhe wants> me to get off Prednisone. Anyone taking that drug? ÂWhat> side effects have you had? Has it helped you?> > Thanks.> > Sue D.> > 63 yr old, Fibrotic NSIP dx 9/07, VA> >>

[Guest guest]

good idea

unfortunately, many people are not motivated until it becomes an issue

"it will never happen to me" is the saying

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 4:30 PM

PinkAmong my many believes and convictions is one that everyone for whomlarge dosages of prednisone is prescribed should be referred to adiabetes nutritionist. That way if they get diabetes they are countingcarbs and watching their diets and even if they don't get it, it mightprevent it. Furthermore, the diet is healthy regardless. Just seems alogical measure to take up front.>>> Subject: Re: Re: transtrachealoxygen/Cyclophospha mide or Cytoxan> To: Breathe-Support@ yahoogroups. com> Date: Saturday, May 16, 2009, 6:28 PM>>>>>>>>>> I am taking Prednisone. I have gained 32 lbs in just a few months. Ihad a blood test yesterday to see if it I need my thyroid meds changed.I hope that she tested for diabetes too. I am one of the people thatPrednisone helps so my doctor sort of said take it or die. e also toldme that

the side affects can be treated. If he had to put me on Imuranthose side affects can't. So I get I'll be fat and live awhile longer.Beverley Joy, 70, IPF, 1-09 Idaho> Â>> Re: transtracheal oxygen/Cyclophospha mideor Cytoxan>>>>>> Thanks to Bruce and Beth for some info on TTO. I aminterested in pursuing it with my doc.>> MB, I am seeing Dr. on at Duke.>> On another matter, he is considering putting me on the drug Cytoxanfor 4 to 6 months because the cellcept  (I’m on max dose of3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wantsme to get off

Prednisone. Anyone taking that drug?  Whatside effects have you had? Has it helped you?> Thanks.> Sue D.> 63 yr old, Fibrotic NSIP dx 9/07, VA>

[Guest guest]

good idea

unfortunately, many people are not motivated until it becomes an issue

"it will never happen to me" is the saying

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 4:30 PM

PinkAmong my many believes and convictions is one that everyone for whomlarge dosages of prednisone is prescribed should be referred to adiabetes nutritionist. That way if they get diabetes they are countingcarbs and watching their diets and even if they don't get it, it mightprevent it. Furthermore, the diet is healthy regardless. Just seems alogical measure to take up front.>>> Subject: Re: Re: transtrachealoxygen/Cyclophospha mide or Cytoxan> To: Breathe-Support@ yahoogroups. com> Date: Saturday, May 16, 2009, 6:28 PM>>>>>>>>>> I am taking Prednisone. I have gained 32 lbs in just a few months. Ihad a blood test yesterday to see if it I need my thyroid meds changed.I hope that she tested for diabetes too. I am one of the people thatPrednisone helps so my doctor sort of said take it or die. e also toldme that

the side affects can be treated. If he had to put me on Imuranthose side affects can't. So I get I'll be fat and live awhile longer.Beverley Joy, 70, IPF, 1-09 Idaho> Â>> Re: transtracheal oxygen/Cyclophospha mideor Cytoxan>>>>>> Thanks to Bruce and Beth for some info on TTO. I aminterested in pursuing it with my doc.>> MB, I am seeing Dr. on at Duke.>> On another matter, he is considering putting me on the drug Cytoxanfor 4 to 6 months because the cellcept  (I’m on max dose of3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wantsme to get off

Prednisone. Anyone taking that drug?  Whatside effects have you had? Has it helped you?> Thanks.> Sue D.> 63 yr old, Fibrotic NSIP dx 9/07, VA>