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Old 11-22-2003, 12:39 PM   #1
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Question Has anyone had Cytoxen?

Hi! I am new here, but I have been diagnosed with Lupus since 1990. At first it was discoid, but soon turned into systemic. My question is, about Cytoxen-Chemo. I am having my second bout with it for my nephritis. First round was in '97 and now again, starting in the begining of November. Some doctors said I can only have it once...so the arguement went how come I'm having it again? Has anyone had any experience with this before I go into more detail? ...Thanks

 
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Old 11-22-2003, 06:29 PM   #2
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Re: Has anyone had Cytoxen?

Hi there!

I don't believe that you can only have Cytoxan once! I know people that have been on it for years and years and do beautifully on it. As long as you dont have side effects from it, you can be on it as often as you need. Every person with Lupus is different, everyone tolerates medications different.

I am sorry to hear about your bout of nephritis. I have had that before, it took me a long time to feel better! It feels like someone is kicking you in the back hey? Yucky. You take care and you can go into detail anytime!

~Angelic

 
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Old 11-22-2003, 06:30 PM   #3
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Re: Has anyone had Cytoxen?

also.. I have to add that you will have LESS side effects with getting it IV than you do by mouth. Take care

~Angelic

 
Old 11-22-2003, 09:05 PM   #4
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Re: Has anyone had Cytoxen?

Thanks AngelicBrat!
Acutally the IV dose that I am on is considered chemo to the doctors and nurses that treat me. I like to say 'treatment' instead of chemo because it's hard enough to try to explain to people what lupus is more or less why I'm being treated with chemo. It's just easier, ya know? I had cytoxen back in '97 and lost the crown of my hair and gained a beard. Hubby thought I looked butty-ful! LOLOLOL! If it weren't for him then, I wouldn't be alive now. That's why it's soooo difficult to even think I'm going throught this again. But my labs were screaming for attention again, and so we had to ablige. That selfish little kidney of mine! LOLOL

Do you know that my other doctors have battled the facts that cytoxen has a limited or lifetime dose? I have already passed mine up back in '97, but they could only find cytoxen to use. Does this sound right to you? To anyone?

 
Old 11-23-2003, 11:03 PM   #5
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Re: Has anyone had Cytoxen?

This is interesting, I have never heard that you can only receive Cytoxan once. I've had it all last summer, once per month. than went on once every 3 months. This helped me. Also, it was part of the big guns used to get me through. The doctors have assured me that if I had the same or any other problem they would not hesitate to use the cytoxan again. I'd do it. I just can't believe that the doctors would limit this.

Maybe there was a mis understanding on their part... maybe they meant something else. I think I would ask for explanation in detail.. and do take notes... you are entitled to know.

For your sake, if the time comes andyou need it, I hope you get the cytoxan. Good luck my friend.

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Old 01-31-2004, 03:25 PM   #6
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Cool Re: Has anyone had Cytoxen?

undefined
Quote:
Originally Posted by Jida's Girl
Hi! I am new here, but I have been diagnosed with Lupus since 1990. At first it was discoid, but soon turned into systemic. My question is, about Cytoxen-Chemo. I am having my second bout with it for my nephritis. First round was in '97 and now again, starting in the begining of November. Some doctors said I can only have it once...so the arguement went how come I'm having it again? Has anyone had any experience with this before I go into more detail? ...Thanks

 
Old 01-31-2004, 03:35 PM   #7
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Re: Has anyone had Cytoxen?

HI. I am new at these message boards. I was diagnosed with Lupus July 6, 1979. I have SLE. YES, I am very familiar with Cytoxen-Chemo. I started in April of 2003 along Other medicines. I have had 4 strokes due to the lupus.

 
Old 02-10-2004, 11:30 AM   #8
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Thumbs up Re: Has anyone had Cytoxen?

Dear Jida's Girl,
I don't know a thing about cytoxan and I hope I never have to endure such a strong and and serious medication, BUT I do want you to know that you have an incredibly good attitude. I admire your disposition and your sense of humor. I think you could withstand anything.

Best of luck to you.
Lemonlips

 
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