Re: Cytoxan

[Guest guest]

,

I am only on my second week of Cytoxan. So far I have only had a couple of bouts of nausea.

How many milligrams of Cytoxan are you on?

I was taking Darvocet a while back but my Rhuemy said it was not appropriate for RP and switched me to Ultram.

Love Ya,

Sandy

dear Sandy, sorry it's ben so long to get back. I think that it's the pred. that's making me feel so sick. I got sick the first day I took both the pred and cytoxan . the doctor started me on both together. I am still feeling pretty lousy. Ellen did have an open MRI and spent a week in the hospital. she had a real bad flare. She is home now and will probably update you when she's up to it. How are you doing on Cytoxan? Another Dr. told me about Ultram today. I will ask ellen about it and I am going to check on it for myself instead of darvecet. Hope your doing good. thanks for caring. Sandy Catalusci wrote:

,So sorry to hear you and Ellen are going through so much right now.Maybe the bone scan will give you some idea of whats going on.Has Ellen been on Pred for a long time?For pain I take Ultram and get good results from it.I agree with , see if you can get the MD. to order an open MRI.I started taking Cytoxan this morning, I also take 30mg. of Pred. a day.Did your stomach problems start right away or did the Cytoxan have to build up in your system before you felt the effects? My Rheumy said if I experience stomach problems we can try Cytoxan by I.V. Maybe youcan check with your doc concerning I.V. treatment.Please try not to get too stressed. I know its hard with Ellen being so sick.Love Ya,Sandy Hi everyone, I have a couple questions????? As most of you know my sister is ellen. this past weekend she ended up in the hospital. She has been in one flare after another but last weds. she felt something in her hip. She has had many problems with her hips in the past. she is in a wheel chair when ever possible. (her house is not equipped for wheel chair). well, as the week went by her pain got worse. by sat. morning she called and said she was in the worse pain she ever had in her life. we told her to call the ambulance.(her family was away) I was 41/2 hours away at my other sisters. I only live an hour from ellen and we help each other out. anyway they took X-rays and nothing broken.of course. they don't know what's wrong. Her pain is a 15. ellen can take a lot of pain when I hear her screaming out in agony I know its bad. they admitted her and gave her morphine. well after hours and hours it eased the pain. the problem is she almost stopped breathing and then almost went into a coma. I saw her yesterday and she didn't even know I was there. she is having a bone scan today. Ellen is afraid they won't find anything and send her home in pain. My questions are does anyone know what this could be? I talked to the nurse I told them it is very frustrating both for the patient and the doctor because anyone with rp isn't your normal dx. That its hard to find what it is that's wrong but can't give up. I told them she should have a MRI or cat scan. this I learned from all of you. They can't give her an MRI they said because Ellen couldn't fit in machine. Ellen would kill me if I told you that but I am so worried for her. before she was dx with rp a doctor told her "gee I really fattened you up on all these meds. hah. laugh laugh". She hardly eats,but 26 years on meds can do a job. there must be something they can do. We don't have drs. with knowledge about rp around here. Our dr. in boston MA. is suppose to be the best and we are his only two pts. he's had with rp ever. Never mind our pc drs. Mine is a lot better than hers though. Also can you imagine giving her so much morphine we almost lost her. Does anybody have any idea of other pain meds. I am going to try to get her transferred to Boston hospital but I am one tiny person in a big world of doctors and insurance co. You have all been there done that I bet. the other problem is that I am having a flare sense June. My doctor put me on cytoxan and predisone and I was on dapsone, plus 1200 mg of calcium a day plus a good vitamin. Just found out I was pushed into early menopause. anyway along with all the rp problems, I am sick as a dog with the meds. I am trying to push through all the nausea and weakness. but it gets harder and harder. I stopped the calcium and vitamins for a while but didn't help. I have two boys 9 & 12 to keep up with and I want to be with my sister and fight for her. I have been on these meds before but not all at once. Can't remember feeling this bad. anyone have any idea's. I do have compazene but it puts me asleep not a good idea. I know ellen and i just joined but wow do we need your input. thanks DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi Sandy,

I am on 150mg of cytoxan. I am still having a lot of problems

with my stomach. I am going to contact my dr. on Monday when he's

back from vacation.

Sandy Catalusci wrote:

,I

am only on my second week of Cytoxan. So far I have only had a couple of

bouts of nausea.How many

milligrams of Cytoxan are you on?I

was taking Darvocet a while back but my Rhuemy said it was not appropriate

for RP and switched me to Ultram. Love

Ya,Sandy

dear

Sandy,

sorry it's ben so long to get back. I think that it's the pred.

that's making me feel so sick. I got sick the first day I took both

the pred and cytoxan . the doctor started me on both together.

I am still feeling pretty lousy.

Ellen did have an open MRI and spent a week in the hospital. she

had a real bad flare. She is home now and will probably update you

when she's up to it.

How are you doing on Cytoxan? Another Dr. told me about Ultram

today. I will ask ellen about it and I am going to check on it for myself

instead of darvecet. Hope your doing good. thanks for caring.

Sandy Catalusci wrote:

,So

sorry to hear you and Ellen are going through so much right now.Maybe the

bone scan will give you some idea of whats going on.Has Ellen been on Pred

for a long time?For pain I take Ultram and get good results from it.I agree

with , see if you can get the MD. to order an open MRI.I started

taking Cytoxan this morning, I also take 30mg. of Pred. a day.Did your

stomach problems start right away or did the Cytoxan have to build up in

your system before you felt the effects? My Rheumy said if I experience

stomach problems we can try Cytoxan by I.V. Maybe youcan check with your

doc concerning I.V. treatment.Please try not to get too stressed. I know

its hard with Ellen being so sick.Love Ya,Sandy

Hi

everyone,

I have a couple questions????? As most of you know my sister is

ellen.

this past weekend she ended up in the hospital. She has been in

one

flare after another but last weds. she felt something in her hip.

She

has had many problems with her hips in the past. she is in a wheel

chair

when ever possible. (her house is not equipped for wheel chair).

well,

as the week went by her pain got worse. by sat. morning she called

and

said she was in the worse pain she ever had in her life. we told

her to

call the ambulance.(her family was away) I was 41/2 hours away

at my

other sisters. I only live an hour from ellen and we help each

other

out. anyway they took X-rays and nothing broken.of course.

they don't

know what's wrong. Her pain is a 15. ellen can take a lot of pain

when I

hear her screaming out in agony I know its bad. they admitted her

and

gave her morphine. well after hours and hours it eased the pain.

the

problem is she almost stopped breathing and then almost went into

a

coma. I saw her yesterday and she didn't even know I was there.

she is

having a bone scan today. Ellen is afraid they won't find anything

and

send her home in pain.

My questions are does anyone know what this could be? I talked to

the

nurse I told them it is very frustrating both for the patient and

the

doctor because anyone with rp isn't your normal dx. That its hard

to

find what it is that's wrong but can't give up. I told them she

should

have a MRI or cat scan. this I learned from all of you. They

can't give

her an MRI they said because Ellen couldn't fit in machine. Ellen

would

kill me if I told you that but I am so worried for her. before

she was

dx with rp a doctor told her "gee I really fattened you up on all

these

meds. hah. laugh laugh". She hardly eats,but 26 years on

meds can do a

job. there must be something they can do. We don't have drs. with

knowledge about rp around here. Our dr. in boston MA. is suppose

to be

the best and we are his only two pts. he's had with rp ever. Never

mind

our pc drs. Mine is a lot better than hers though.

Also can you imagine giving her so much morphine we almost lost

her.

Does anybody have any idea of other pain meds. I am going

to try to get

her transferred to Boston hospital but I am one tiny person in

a big

world of doctors and insurance co. You have all been there done

that I

bet.

the other problem is that I am having a flare sense June. My doctor

put

me on cytoxan and predisone and I was on dapsone, plus 1200 mg

of

calcium a day plus a good vitamin. Just found out I was pushed

into

early menopause. anyway along with all the rp problems,

I am sick as a

dog with the meds. I am trying to push through all the nausea and

weakness. but it gets harder and harder. I stopped the calcium

and

vitamins for a while but didn't help. I have two boys 9 & 12

to keep up

with and I want to be with my sister and fight for her. I have

been on

these meds before but not all at once. Can't remember feeling this

bad.

anyone have any idea's. I do have compazene but it puts me asleep

not a

good idea.

I know ellen and i just joined but wow do we need your input.

thanks

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT

IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Amber and Carol,

I am on 100mg of Cytoxan a day, but was told by my Doc I can go as high as 200mg. a day.

My main side effects are nausea, abdominal cramps, profuse

sweating and hair loss. I also have swelling of my feet and lower legs, but I had this before I started Cytoxan.

Before starting on Cytoxan I was on Methotrexate, Dapsone,

Arava, Enbrel and Cyclosporine. None of these worked for me.

Has your Mom seen a Pulmonologist?

Sandy

I just want to say that my mom and are so My mom recently went to her rheumy. and told him how out of breath she was. She wanted to know if she should be taking the cytoxan anymore. He said yes and upped her to 160mgs. of prednisone and kept her cytoxan at 150 mg. That seems like a lot. On top of the breathlessness, she is experiencing quite a bit of swelling in her lower legs. She was checked for blood clots, she is o.k. there. But, should her doctor keep her on this medicine with these side effects? My mom would like to know how much cytoxan most individuals take, what your side effects have been and also what medicines you may have used before cytoxan? Thank you.I know we are new and I am not sure if this has been discussed, but my mom just tried the C-Pap machine last night while she slept. I have yet to speak with her about how it worked last night, but I thought I would throw it out there in case it was useful to any of you and perhaps you have already discussed and used this. Thank you,Amber & CarolDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Amber and Carol,

I am on 100mg of Cytoxan a day, but was told by my Doc I can go as high as 200mg. a day.

My main side effects are nausea, abdominal cramps, profuse

sweating and hair loss. I also have swelling of my feet and lower legs, but I had this before I started Cytoxan.

Before starting on Cytoxan I was on Methotrexate, Dapsone,

Arava, Enbrel and Cyclosporine. None of these worked for me.

Has your Mom seen a Pulmonologist?

Sandy

I just want to say that my mom and are so My mom recently went to her rheumy. and told him how out of breath she was. She wanted to know if she should be taking the cytoxan anymore. He said yes and upped her to 160mgs. of prednisone and kept her cytoxan at 150 mg. That seems like a lot. On top of the breathlessness, she is experiencing quite a bit of swelling in her lower legs. She was checked for blood clots, she is o.k. there. But, should her doctor keep her on this medicine with these side effects? My mom would like to know how much cytoxan most individuals take, what your side effects have been and also what medicines you may have used before cytoxan? Thank you.I know we are new and I am not sure if this has been discussed, but my mom just tried the C-Pap machine last night while she slept. I have yet to speak with her about how it worked last night, but I thought I would throw it out there in case it was useful to any of you and perhaps you have already discussed and used this. Thank you,Amber & CarolDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Amber and Carol... You WILL be helpful to us. We learn new things everyday

from someone... I'm sorry I can't help you with the cytoxan. I have never

been on it..I am on a c pap machine though. It worked so well for me until

just recently. The dr says I need a heat humidifier added to it because I

feel like I'm choking and all dried out. My insurance won't pay for it and it

is $350. Guess that's what I'll ask for for Christmas. LOL Hope your mom

is feeling better real soon... Tell her Hi for me.. Am so glad that you found

us too.

hugs

You all have been so helpful, and I hope to be helpful to you

all as well.

[Guest guest]

Amber and Carol... You WILL be helpful to us. We learn new things everyday

from someone... I'm sorry I can't help you with the cytoxan. I have never

been on it..I am on a c pap machine though. It worked so well for me until

just recently. The dr says I need a heat humidifier added to it because I

feel like I'm choking and all dried out. My insurance won't pay for it and it

is $350. Guess that's what I'll ask for for Christmas. LOL Hope your mom

is feeling better real soon... Tell her Hi for me.. Am so glad that you found

us too.

hugs

You all have been so helpful, and I hope to be helpful to you

all as well.

[Guest guest]

In a message dated 10/25/01 4:10:08 PM Pacific Daylight Time,

dmorgan26347@... writes:

<< how about it group, has

any one out there been on that much pred before.

dawn >>

Dawn, the highest dose of pred for me was 80 mg.

[Guest guest]

In a message dated 10/25/01 4:10:08 PM Pacific Daylight Time,

dmorgan26347@... writes:

<< how about it group, has

any one out there been on that much pred before.

dawn >>

Dawn, the highest dose of pred for me was 80 mg.

[Guest guest]

,

I know Cytoxan is a very hard drug. It is one of the strongest chemos and used for breast cancer many times. If you can't tolerate it, maybe Remicade or Enbrel or Humira may help. all three of them are TNF inhibitors-- and aren't as strong as the Cytoxan.

I don't remember if you had a reaction to them, or just haven't had the opportunity to try them.

As for the added exhaustion from the cytoxan, can you get your MD to do to a CBC. You may have added anemia-- and that they can treat. Let the MD know what's happening, so he can help you now, rather than waiting.

Take care,

Tracie

NS co-owner/moderator

[Guest guest]

Cytoxan has been being used for some time for advanced NS. It is hard on some people, so it is not generally a first choice starting place.

With the new BRM's they aren't using Cytoxan as much. The Mesna is a medication that helps keep the Cytoxan from harming your kidneys.

I'm sure that if it doesn't help, that they may try the Remicade or Enbrel.

At least they are taking your NS seriously, and not blowing you off over it. That seems to be a big problem for many of us, and I know it can be so very frustrating.

Take care,

Tracie

NS Co-owner/moderator