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Jyneal
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I was wondering if anyone could give me more information on taking IV Cytoxan. I have researched this a little, but I still would like to try and get as much info as possible. What side effects did you experience? Did it make you feel better? Did you find yourself getting more colds and so forth. They are starting me on this treatment plan after visiting John Hopkins for a consultation. I went there for a consultation and was admitted to the hospital after talking with the doctor for 10 minutes. I am still having lung issues and coughing up blood since August. I was hospitalized for the month of October. They had to induce coma and intibate. They did a lung biopsy which came back good. I just can't seem to get all my energy back and still have difficulty breathing. I am now on oxygen and have to walk with a cane. I am 38 and this is so frustrating. I am unable to work. Sorry I went off on a venting spree for a minute.

If anyone can tell me their experience with cytoxan I would appreciate it. Thanks so much, and Merry Christmas to everyone.

Jyneal
 

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I've had very good luck with the stuff. Was treated for Nephritis and feel it saved my life...or at least my Kidneys! I didn't have a big problem with the chemo, got through it pretty well. It would suck a little life outta me for a couple of days, but I always had chemo on Friday and was back at work Monday. You need to watch for germs. About a week or two after chemo my white cells would plummet and I got sick once while I was down and ended up isolated in the hospital for a week. After that I was VERY carful about keeping hands clean and staying clear of sick people. My Doc. also tested my blood every other day after chemo. I've had two bouts of Nephritis, first around 13 years ago. Had 10 treatments the first time. A bit over two years ago Nephritis was back, got 4 treatments. My current Nephrologist is very picky about the chemo. I was in the hospital at 8am. Got fluids, steriods, nausia meds, Cytoxan, and fluids untill midnight. Then I was sent home with strict orders to keep drinking fluids and if I couldn't hold them down, go back to the hospital to get an IV hooked up again (never had to do that!). He was very worried about the dangers of the stuff causing bladder cancer. Don't let the stuff sit in your bladder! Drink lots of fluids and pee as often as possible. If Nephritis returns, and I imagine it will, I'll be trying Cellcept. Nephrologist doesn't want me to get any more Cytoxan, feels I've had enough. This scares me as it's worked so well for me, but I understand his worries about the cancer risk.
Merry Xmas to you too.......and may the new year bring you some better health, I hope the stuff helps you the way it did me!

Best Wishes,
Eric
 

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Jyneal
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Discussion Starter #3
Thanks for your information Eric. All the info or experiences I get from people will help. I am glad it worked well for you. I know this will work for me too. You also have a wonderful Christmas.

Jyneal
 

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I have to agree with Eric, I also had Cytoxan for Kidney involvement. 6 months of treatment followed by 18 months of Cell Cept treatment. Prednisone was decreased over the 2 years. good luck! granola
 

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Jyneal
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Discussion Starter #5
Thanks Granola,

I have been on prednisone for 30 months and cellcept for 24 months. I just worry about how the cytoxan will effect me and my daily life. Did you both feel fine the night of treatment, and just tired for the next two days. Were those the only side effects you felt? I am so tired all the time now, I can't imagine sleeping more than I already do. Thanks for all of your input. I appreciate it very much.

Jyneal:)
 

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Been away from the computer for awhile!
Night of chemo I didn't feel all that bad. Of course I was in the hospital till midnight, so not much night left by the time I got home! Have them give you some meds for nausia. I didn't take any at first, but then when the dose got upped I had a bad experience, got pretty sick and took me awhile to get over it (took the meds but it took awhile for them to kick in).
I my case the chemo improved my life, got me feeling better. A couple of days of yuk and then I did pretty well.....but as I said...watch out for germs! Usually by a week after chemo I was over any affect from the chemo (other than the germ worrys).
Everyone seems to react differently to the stuff. I've talked with some that just couldn't tolerate it, made them too sick, but that seems to be the exception more than the norm.

-Eric
 

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I don't specifically have "nephritis", however my kidneys have been spewing protien and red blood cells for a while. My regular urine is +2 with "high" RBC's. The 24 hour is on the low end of high.

I have been on Cellcept 2000mg for about 1 year (1000mg before that for 18 months)...I think Cytoxin may be next for me.

Any idea why the CellCept isn't enough?

Thanks - Stephanie
 
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