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Thread: Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

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    Quote Originally Posted by HopeinTN View Post
    Dryhill- 5 or 6 liters every day for a few days? OMG. I was thinking around a gallon a day. While at wotk today I drank 2 liters (8.5 hours) and can drink a few more glass tonight. Will that suffice. I think all the water is giving back and leg aches.

    Thanks again!
    You should not drink 5-6 liters of water a day. That is way too much. You can harm yourself with too much water--diluting electrolytes, medications and causing water intoxication, which is deadly.

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    Whew...I was thinking there was no way I could drink that much. I'm drinking 2 liters during the day at my desk and a couple more glasses thru the night. I think that should be enough. So far so good. Thanks again!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    Hi Katrina,
    Just a few comments to add to those of the others you have received in response to your opening note. To help counteract Cytox's potentially serious side effects upon the bladder, please ask your doctor about taking Mesna along with it (check out the post entitled Cytox and Mesna http://www.wegeners-granulomatosis.c...ighlight=mesna). I was on 200mg/day oral cytox and 75ml/day Mesna for six months - - with no bladder problems, at least none that have yet to appear. Had plenty of gastro/intestinal pain each day, but no bladder problems. As for the increased water consumption, I was told to shoot for 2-3 quarts/day. Continual tiredness as others have mentioned and lost most of my hair (but it has come back, albeit fully curly whereas I've never had any curly hair before). It's also my understanding that the oral method is more effective than the IV.

    Was on Bactrim while on Cytox and you should be as well; it's to help prevent lung infections which are more prevalent while taking the Cytox. I'm now on MTX (22.5 mg/week) with an Rx of folic acid to help counter it's side effects - - no Bactrim. Started out at 90mg/day of Prednisone and now down to 10mg. My Wegs is also primarily in the lungs and I had one of those open-lung biopsies with a wedge resection similar to your edxperience. That was a year ago and there is still considerable post-op pain (which is quite typical); so, if your lung still hurts, its probably that.

    Best of luck, Katrina, and welcome to the family. Ron

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    I second the keeping a journal suggestion. It is extremely helpful down the line, as you start to lower medications to try and decipher Wegs activity from Medication & side effects.
    Nicole

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    My fault I did say liquid and should have explained that I have electrolytes to add to the water. In my case I have been on Cytox for much longer than is normal, or particularly safe. I had chemo on Thursday morning and am now easing back on the liquid intake (thank goodness, I spend sooooooooo much time in the loo!).
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    Katrina-we are all scared little bunnies here, but the important thing is that you don't have to do it alone! You are among friends who have walked, and continue to walk, the same paths. Every therapeutic course comes with "side effects". But it is also true that the effects can vary from what the book says. I am one of the small percentage of prednisone users who lost weight. It did make my dreams wilder, longer-formed, and even more violent. I also got shaky fingers, weird cramps, and cataracts. I try to minimize the bone density loss by walking a lot and lifting weights regularly. The only CTX I had was intravenous, and it blasted my taste buds. Oh, and pulled out a bunch of hair. Then again, I was follicly challenged already....

    One "side effect" that you note is that most people do not understand what the ailment is all about. Yeah, this is a real phenomenon--but not on this forum!

    Al

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    Default Hello

    Thanks for the info on Mesna and I'll run it by my doc. As of today the only real difference I notice is that my legs ache and I'm having trouble sleeping. Not enough to worry about yet but on the radar. I think I'm sticking to the 3 qts per day.

    Is there a normal time frame from first dose to side effects? Does it take some time to get through the body? I picked up on the prednisone effects pretty quickly after I cleaned the entire house, dog and changed a door knob (not to mention that while I was changing the knob I locked myself inside a very small bathroom- the knob wasn't on yet so I couldn't just unlock it. I was alone and 45 minutes later I got out thanks to someone leaving a bobby pin under the sink). Oh the thoughts that were racing in my head.

    Yes, I'm still having a few sharp pains in my chest from the lobectomy and wedge, but I'm hoping they will subside in short time. I still have pain when I yawn odlly enough.

    It is kind of weird that when I explain to friends about the chem drug I'm on (cytoxan) they look at me and say but you don't have cancer. Or they say, don't worry about it, it's not the same dose as a cancer patient would get. I'm not sure why they would ever say anything like that when I'm so scared. No matter the disease, if you are taking a chemo drug abd lost 1/2 of your lung...it's serious.

    I can't thank you guys enough. Finding this site was a blessing. I know we are all in it together and for that I'm glad I have you all.

    Have a great night and a Happy Halloween!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    Quote Originally Posted by HopeinTN View Post
    Thanks for the info on Mesna and I'll run it by my doc. As of today the only real difference I notice is that my legs ache and I'm having trouble sleeping. Not enough to worry about yet but on the radar. I think I'm sticking to the 3 qts per day....I can't thank you guys enough. Finding this site was a blessing. I know we are all in it together and for that I'm glad I have you all....Have a great night and a Happy Halloween!
    Katrina, About those achy legs: Do you have any puffiness around the ankles or feet? If so, you could be retaining water. Any edema should be noted and reported. And mesna is very important to use with CTX. And have a fun Halloween yourself! It's a lot more fun to play with costumes than to be scared to death of those nasty drugs, isn't it?

    Al

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    Katrina,

    Sorry about the reactions from your friends, I can totally relate, they just have a hard time understanding. Wegs used to be fatal until 1970 when they started using Cytoxan to treat it, so this is not a disease to take lightly. I started sending some of my friends this link Wegener's granulomatosis - Wikipedia, the free encyclopedia so they have a better idea of what Weg's is. Honestly I am still working on how to tell folks, my friends really got it when they had to help me in the 2 1/2 weeks when I was so weak, I looked really bad.

    So for me the first month on Cytoxan was a bit hard, but when it got really bad was when one month hit and the drug had reached full potency, and the next 2 1/2 weeks were really hard. I would be laying on the couch and get lightheaded, was so weak. But after I made it to the two month mark things are almost normal now. I am a runner and I started walking after 2 months and even got a seven mile walk in and now I am back to spin classes, but seems I have already injured myself because of how long I was inactive so have to be careful on how quickly you get active.

    Just know you are not going to get hit with CTX all at once, it has to build in your system for a month until it gets fully active. My hair started falling out at 3 1/2 weeks, it sucks, hopefully you won't have as much of that, but it was the same for me both times and I now have to wear a hat or headband when I go out.

    Good luck!

    Anna

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    No swelling in the ankles or legs yet but thanks for that info. I'll keep an eye on that and check them again at the end of the day.

    Thanks for the link too, I'll share that with my friends. At least I know what the worst case is if/when I notice symptoms, and that's what I was looking for, as well as a time frame. I have very think natually curly hair, so if I lose a bit of it, I have some to spare. If it all goes, then oh well It's the perfect time of year for hats. I always wanted to be a red head.

    Thanks again and Happy Halloween!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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