Re: transtracheal oxygen/Cyclophosphamide or Cytoxan

[Guest guest]

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. It’s a

drug given for cancer immunotherapy. I think he wants me to get off

Prednisone. Anyone taking that drug? 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 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. It’s a

drug given for cancer immunotherapy. I think he wants me to get off

Prednisone. Anyone taking that drug? What side effects have

you had? Has it helped you?

Thanks.

Sue D.

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

[Guest guest]

Sue

As MB is on the road at the moment, just was going to toss in that Dr.

on is also her doctor.

>

> 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. It's a drug given for cancer

immunotherapy.

> I think he wants me to get off Prednisone. Anyone taking that drug?

What

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

>

> Thanks.

>

> Sue D.

>

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

>

[Guest guest]

Sue

As MB is on the road at the moment, just was going to toss in that Dr.

on is also her doctor.

>

> 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. It's a drug given for cancer

immunotherapy.

> I think he wants me to get off Prednisone. Anyone taking that drug?

What

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

>

> Thanks.

>

> Sue D.

>

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

>

[Guest guest]

Sue,

I see Dr on also. I really think quite highly of him. I'm not on Cytoxan though it was something that has been discussed but discarded in my case at least for now.

I've been on Imuran for a few months to control the symptoms of my dermatomyositis. So far it seems to be working fairly well and no noticable side effects. But the Imuran was prescribed by my rheumatologist not by Dr. on.

What I've heard about Cytoxan is fairly negative. It can be effective but the side effects are fairly horrific and I was happy when that idea was dropped. I'll go down that road when/if I must but I'm content not to be there yet.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, May 15, 2009 10:40:40 AMSubject: 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 max dose of 3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D.

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

[Guest guest]

Sue,

I see Dr on also. I really think quite highly of him. I'm not on Cytoxan though it was something that has been discussed but discarded in my case at least for now.

I've been on Imuran for a few months to control the symptoms of my dermatomyositis. So far it seems to be working fairly well and no noticable side effects. But the Imuran was prescribed by my rheumatologist not by Dr. on.

What I've heard about Cytoxan is fairly negative. It can be effective but the side effects are fairly horrific and I was happy when that idea was dropped. I'll go down that road when/if I must but I'm content not to be there yet.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, May 15, 2009 10:40:40 AMSubject: 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 max dose of 3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D.

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

[Guest guest]

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, 1-09 Idaho

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 max dose of 3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D.

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

[Guest guest]

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, 1-09 Idaho

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 max dose of 3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D.

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

[Guest guest]



I just found out that I have Prednisone induced diabetes too. I have to go in tomorrow and get my supplies. Maybe if I can learn to count carbs I can I can lose the prednisone induced weight. Beverley Joy, 70, 1-09, Idaho

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. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]



I just found out that I have Prednisone induced diabetes too. I have to go in tomorrow and get my supplies. Maybe if I can learn to count carbs I can I can lose the prednisone induced weight. Beverley Joy, 70, 1-09, Idaho

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. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

Pink

Among my many believes and convictions is one that everyone for whom

large dosages of prednisone is prescribed should be referred to a

diabetes nutritionist. That way if they get diabetes they are counting

carbs and watching their diets and even if they don't get it, it might

prevent it. Furthermore, the diet is healthy regardless. Just seems a

logical measure to take up front.

>

>

> From: Beverley Joy sparrow4@...

> Subject: Re: Re: transtracheal

oxygen/Cyclophosphamide or Cytoxan

> To: Breathe-Support

> 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?  What

side effects have you had? Has it helped you?

> Thanks.

> Sue D.

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

>

[Guest guest]

Bruce, Beth, or anyone with knowledge of ALS,

my brother in law was diagnoised with this horrible disease in December and it seems its going fast. He cannot pull up his pants or dress himself now but what amazes me is he can seem to open can of beer with pull tabs easily. Now I'am not saying he should not drink , but he drinks all through the day.He gets so demeaning with my sister and her 14 year old son that I want to go and strangle him myself. (being 59 and on o2 maybe the courts will have pity)I understand the dying part , but last Feb. when I was told I had a month to live.obviously wrong ( I think ,or am I too stupid to lay down )all I wanted was to be close to my boys. He has always been controlling ( which is in part due to my sister allowing it) but does anyone think I am wrong when I say hes' making them feel quilty by yelling over stupid things like her slicing a tomato wrong or Joe setting his books down on an angle on the table. I know you do not know him, but i do have a

lake house and chum would never be found! I feel my nephew deserves better than last thought is "I wish my Dad would die". I promised my mother on her deathbed I would also take care of my younger brother and sister, ( which 47 and 58 are not exactly young) but their lifes never seem to get a good standing on the ground. If the groups knows anything about or has experienced this kind of behavior I would be truly thankful . This is keeping me up at night ( more than my boys did at their teenyears ). My sister looks terrible and my nephew is so quiet now and he WAS a honor student.

sharon p asthma ph 2008 small window of criminal insanity 2009

Subject: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 3:30 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]

Bruce, Beth, or anyone with knowledge of ALS,

my brother in law was diagnoised with this horrible disease in December and it seems its going fast. He cannot pull up his pants or dress himself now but what amazes me is he can seem to open can of beer with pull tabs easily. Now I'am not saying he should not drink , but he drinks all through the day.He gets so demeaning with my sister and her 14 year old son that I want to go and strangle him myself. (being 59 and on o2 maybe the courts will have pity)I understand the dying part , but last Feb. when I was told I had a month to live.obviously wrong ( I think ,or am I too stupid to lay down )all I wanted was to be close to my boys. He has always been controlling ( which is in part due to my sister allowing it) but does anyone think I am wrong when I say hes' making them feel quilty by yelling over stupid things like her slicing a tomato wrong or Joe setting his books down on an angle on the table. I know you do not know him, but i do have a

lake house and chum would never be found! I feel my nephew deserves better than last thought is "I wish my Dad would die". I promised my mother on her deathbed I would also take care of my younger brother and sister, ( which 47 and 58 are not exactly young) but their lifes never seem to get a good standing on the ground. If the groups knows anything about or has experienced this kind of behavior I would be truly thankful . This is keeping me up at night ( more than my boys did at their teenyears ). My sister looks terrible and my nephew is so quiet now and he WAS a honor student.

sharon p asthma ph 2008 small window of criminal insanity 2009

Subject: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 3:30 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]

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]



I know someone who has ALS. He has lived about 4 years longer than they said he would and he looks likes he may last awhile longer. He isn't like your brother-in-law. He has a hobby and I think that that is a big help for him. He is doing something useful that he enjoys doing. I hope that things get better for your sister and nephew. Beverley Joy

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]



I know someone who has ALS. He has lived about 4 years longer than they said he would and he looks likes he may last awhile longer. He isn't like your brother-in-law. He has a hobby and I think that that is a big help for him. He is doing something useful that he enjoys doing. I hope that things get better for your sister and nephew. Beverley Joy

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]

Thank You Beverley.

sharon p ph asthma2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: transtracheal oxygen/Cyclophospha mide or CytoxanTo: Breathe-Support@ yahoogroups. comDate: Monday, May 18, 2009, 3:30 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]

Thank You Beverley.

sharon p ph asthma2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: transtracheal oxygen/Cyclophospha mide or CytoxanTo: Breathe-Support@ yahoogroups. comDate: Monday, May 18, 2009, 3:30 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]

BJ

hope it works out for you

i took a diabetes course in the winter time, learned a lot

contact the diabetes organization -- american diabetic association???

they will send you literature with information about watching your diet and counting carbs

the other thing i did was go to the library, take out cookbooks related to diabetes and read the introductions

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 3:19 PM

 I just found out that I have Prednisone induced diabetes too. I have to go in tomorrow and get my supplies. Maybe if I can learn to count carbs I can I can lose the prednisone induced weight. Beverley Joy, 70, 1-09, Idaho

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. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

BJ

hope it works out for you

i took a diabetes course in the winter time, learned a lot

contact the diabetes organization -- american diabetic association???

they will send you literature with information about watching your diet and counting carbs

the other thing i did was go to the library, take out cookbooks related to diabetes and read the introductions

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 3:19 PM

 I just found out that I have Prednisone induced diabetes too. I have to go in tomorrow and get my supplies. Maybe if I can learn to count carbs I can I can lose the prednisone induced weight. Beverley Joy, 70, 1-09, Idaho

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. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

sharon

my ex has ALS

his started in his head -- slurred speech -- strange emotional behaviors

and worked its way down

your brother in law is dealing with major life issues right now and needs to learn how to cope with this horrible disease

ALS is a "death sentence"

however, my ex has had it about 10 years

look the disease up on line

there are organizations regarding it

gather information

there are probably support groups for it too

right now you don't know how receptive anyone in your sister's household will be to your help

i'm sure he is going through the denial and anger stages of dealing with his disease

"Tuesdays With Morrie" by Mitch Albom is a true story about Morrie, a man with ALS

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 5:16 PM

Bruce, Beth, or anyone with knowledge of ALS,

my brother in law was diagnoised with this horrible disease in December and it seems its going fast. He cannot pull up his pants or dress himself now but what amazes me is he can seem to open can of beer with pull tabs easily. Now I'am not saying he should not drink , but he drinks all through the day.He gets so demeaning with my sister and her 14 year old son that I want to go and strangle him myself. (being 59 and on o2 maybe the courts will have pity)I understand the dying part , but last Feb. when I was told I had a month to live.obviously wrong ( I think ,or am I too stupid to lay down )all I wanted was to be close to my boys. He has always been controlling ( which is in part due to my sister allowing it) but does anyone think I am wrong when I say hes' making them feel quilty by yelling over stupid things like her slicing a tomato wrong or Joe setting his books down on an angle on the table. I know you do not know him, but i do have a

lake house and chum would never be found! I feel my nephew deserves better than last thought is "I wish my Dad would die". I promised my mother on her deathbed I would also take care of my younger brother and sister, ( which 47 and 58 are not exactly young) but their lifes never seem to get a good standing on the ground. If the groups knows anything about or has experienced this kind of behavior I would be truly thankful . This is keeping me up at night ( more than my boys did at their teenyears ). My sister looks terrible and my nephew is so quiet now and he WAS a honor student.

sharon p asthma ph 2008 small window of criminal insanity 2009

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: transtracheal oxygen/Cyclophospha mide or CytoxanTo: Breathe-Support@ yahoogroups. comDate: Monday, May 18, 2009, 3:30 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]

sharon

my ex has ALS

his started in his head -- slurred speech -- strange emotional behaviors

and worked its way down

your brother in law is dealing with major life issues right now and needs to learn how to cope with this horrible disease

ALS is a "death sentence"

however, my ex has had it about 10 years

look the disease up on line

there are organizations regarding it

gather information

there are probably support groups for it too

right now you don't know how receptive anyone in your sister's household will be to your help

i'm sure he is going through the denial and anger stages of dealing with his disease

"Tuesdays With Morrie" by Mitch Albom is a true story about Morrie, a man with ALS

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Monday, May 18, 2009, 5:16 PM

Bruce, Beth, or anyone with knowledge of ALS,

my brother in law was diagnoised with this horrible disease in December and it seems its going fast. He cannot pull up his pants or dress himself now but what amazes me is he can seem to open can of beer with pull tabs easily. Now I'am not saying he should not drink , but he drinks all through the day.He gets so demeaning with my sister and her 14 year old son that I want to go and strangle him myself. (being 59 and on o2 maybe the courts will have pity)I understand the dying part , but last Feb. when I was told I had a month to live.obviously wrong ( I think ,or am I too stupid to lay down )all I wanted was to be close to my boys. He has always been controlling ( which is in part due to my sister allowing it) but does anyone think I am wrong when I say hes' making them feel quilty by yelling over stupid things like her slicing a tomato wrong or Joe setting his books down on an angle on the table. I know you do not know him, but i do have a

lake house and chum would never be found! I feel my nephew deserves better than last thought is "I wish my Dad would die". I promised my mother on her deathbed I would also take care of my younger brother and sister, ( which 47 and 58 are not exactly young) but their lifes never seem to get a good standing on the ground. If the groups knows anything about or has experienced this kind of behavior I would be truly thankful . This is keeping me up at night ( more than my boys did at their teenyears ). My sister looks terrible and my nephew is so quiet now and he WAS a honor student.

sharon p asthma ph 2008 small window of criminal insanity 2009

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: transtracheal oxygen/Cyclophospha mide or CytoxanTo: Breathe-Support@ yahoogroups. comDate: Monday, May 18, 2009, 3:30 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]

Hi Sue D.,

My PF and HP respond well to prednisone but I take it in rounds when I need to.

I started taking Cytoxin 50mg daily about 18 months ago. For the first year it

was a miracle and for about 11 months I needed no prednisone. Monthly blood

tests showed no problem with side effects. After that time, it seemed to help

less and less. I am just finishing an 8 week round of pred that began with 60mg

for a week and am very clear at this time. It will be interesting to see, once

under control, if the Cytoxin continues to help. I will let you know.

ann

>

>

> From: Beverley Joy

> 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, 1-09  Idaho

>  

>

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

I think he wants me to get off Prednisone.  Anyone taking that drug?   What

side effects have you had?  Has it helped you?

> Thanks.

> Sue D.

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

>

[Guest guest]

Hi Sue D.,

My PF and HP respond well to prednisone but I take it in rounds when I need to.

I started taking Cytoxin 50mg daily about 18 months ago. For the first year it

was a miracle and for about 11 months I needed no prednisone. Monthly blood

tests showed no problem with side effects. After that time, it seemed to help

less and less. I am just finishing an 8 week round of pred that began with 60mg

for a week and am very clear at this time. It will be interesting to see, once

under control, if the Cytoxin continues to help. I will let you know.

ann

>

>

> From: Beverley Joy

> 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, 1-09  Idaho

>  

>

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

I think he wants me to get off Prednisone.  Anyone taking that drug?   What

side effects have you had?  Has it helped you?

> Thanks.

> Sue D.

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

>

[Guest guest]



Thank you. I'll check it out. Beverley

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. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks. Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA