[KarolH]

Can anyone tell me about their experience with this drug?

I would love to hear the good, bad and ugly.

Thanks so much for any input.

It is very much appreciated.:wink2::wink2::wink2:

 

[SoCalEric]

So whatcha wana know? I know the stuff pretty well! Had chemo about 10 years ago to treat Nephritis......it worked wonders! I had quite a few very good years after that, and then nephritis returned a couple of years ago. More Cytoxan, and it took care of the problem again.
A fairly normal treatment schedule (and the schedule I had the first time) is once a month for 6 months and then once every three months for a total of 12 treatments. First time I had 10 treatments and my Docs. saw no reason to continue, I had responded to it very well (even my Docs. were surprised). Second time my Nephrologist was very careful about the treatments. I only had four treatments, he wanted to give me as little as possible due to the risk of it causeing cancer. I had to go to the hospital at 8am, got fluids, streroids, nausia med, Cytoxan, and then fluids till MIDNIGHT. Then I got to go home with strict orders to keep drinking fluids and pee often. You don't want this stuff sitting in your bladder. My max dose was about 1500. Got kinda sick afterwards but mainly was just very tired (I always had chemo on Friday and was back at work Monday). Things will taste kinda funky, metallic. there's some foods I just couldn't eat, they tasted horrible! Your white cells will most likely take a dive a week or two after treament, you should get your blood checked very regularly afterwards (I had to go in every other day!). I caught a cold and ended up hospitalized, isolated, feeling horrible, when my count was down...AVOID GERMS!
Are you going to be getting this stuff? What are they treating you for? My sister also has Lupus and has had Cytoxan to treat her troubles (but not Nephritis). It didn't help her much the first time, but the second it did.
My Doc say the next time Nephritis returns we'll be trying Cellcept, it's more commonly used to treat Nephritis these days and not as hard on the body. He feels I've had enough Cytoxan, doesn't want me on it any longer if it can be avoided.
Any questions just let me know. Chemo isn't fun, but it wasn't as bad as I thought it'd be....and it worked! The second time I was actually relieved when we started chemo! I may not be in here this weekend but during the week I tend to pop in a couple of times a day, but sometimes forget or miss topics I've posted, so feel free to PM me.

Best Wishes,
Eric

 

[KarolH]

Eric,

Thanks so much. I googled lupus cytoxan and decided I will never take this drug.

Now after reading your post I am sure I will never take this drug.

They'd have to find something else or this Rebel without a cause will stand her ground.

I appreciate your input here.

 

[flutterbye]

Hi Karol,

The prospect of cyclophosphamide is quite a scary one, I remember it all feeling really surreal at the time.

I had a course of six months treatment, like Eric monthly infusions along with steroids. It is a really usefull treatment for lots of people, and it can definately bring symptoms under control quickly.

The infusions really aren't too bad, for me I was in as a day patient and I think it was around six hours, that included a saline infusion and the steroids first.

You should get an anti-emetic before the infusion starts, and some to take after, I never had a problem with nausea, but the tiredness can be really tough to deal with. It is important to drink plenty of water afterwards to flush it out.

We are in different parts of the world, so whether the way my system works is similar or not I don't know, but it seemed to me that they have an order in which they try treatments, cyclo did get stuff under control for me quickly and like I say it was the tiredness after that I found the hardest thing, I did loose some hair, but not massive amounts. For me the reason to try the next thing was that the benefits really weren't lasting a long time. I think they do start with the more established treatments, if they do the trick its great, and try others if you are not responding favourably, for me the next treatments were cellcept then IVIG then rituximab.

The only advice that I can think to give is to be guided by your docs, do let them know your concerns and ask about specific worries, I do think if you read a lot of stuff that's out there it can scare us more, but it is a good thing to be aware of all the pros and cons. I remember having to sign a form to say that I understood the risk factors, although it is all a bit of blurr in my memory.

Very best wishes. x

 

[KarolH]

It is important to drink plenty of water afterwards to flush it out.

Hi Flutterbye,

Thanks for taking some time to reply here. Unfortunately I can not drink a lot of fluids at any given time because I do not have a stomach.

That was removed last July so a sip of liquid here and there is really all I can do.

I also can not do steriods because of the GI issues that led up to removal of my stomach so I really think this is a catch 22 situation I am in.

I will talk with the doctor and I am sure he will have a solution.

That is why he gets paid the big bucks..............right?:wink2::wink2::wink2: