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Discussion Starter #1
Hi all,

Tomorrow morning at 11 (Thursday) I will have my first Cytoxan and Pulse Steroid infusion. I won't know the doses until I get there tomorrow. When I was talking to the women who does the infusions she was still calculating my doses. Apparently it is some figured time meter-squared which has to relate to my height and weight. I will ask her to explain it to me when I am there.

My questions are:
For anyone that has had the pulse steroids; do you get really wide awake and stuff like when taking high doses of oral steroids?
I have read that there is some hair loss with Cytoxan but not baldness like cancer patients get - I am wondering when you started noticing the hair loss increasing? Did you lose more hair at the higher strengths?
How about weight loss? I would love to lose some weight.

thanks,
Karen
 

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Hi Karen,

Wishing you lots of luck with the treatment. I had six months of monthly cytoxan, I think four were with IV steroids.

I had some hairloss, mostly patchy clumps, it was definately different to the lupus hair thinning that I had before. I used bandana type scarves, quite funky it would hae been a good look were it not for my moon face! (Which I think was more from the oral steroids than the infusions, I have found that IV steroids don't make me put on weight in the same way that constant oral steroids do.) I think hairloss really varies from person to person, once I had stopped the cytoxan it grew back really quite quickly. I also remember at one stage just chopping it much shorter, I think that some of the hairloss comes from the hair being weakened, and so the heavier my hair was the more it seemed to come out.

As for the IV steroids, I do know that they make me wide awake for some time, but when having them with cytoxan, the biggest probelm that I had was just being so exhausted with it. Which was the biggest problem I had with cyclo. The steroids infusion would counteract that for a short while, if you do get that burst of energy try to remmeber to pace yourself, I have memories of madly decorating some room, because I thought someone had waved a magic wand and I was better, but of course steroid energy is a bit like 'false' energy and overdoing things on the strength of that can bite you on the bum a day or two later!

It's difficult to predict because I think everybody reacts so differently, cyclo DID get a lot of my lupus stuff under control pretty quickly, the beneficial effects weren't maintained for very long, but I know that it is very successfull for some people.

Just another thing about cytoxan, they should give you an anti emmetic, some people do find nausea a problem, I never did, and also it is good to be drinking water after to fluch it out of the bladder.

Wishing you all the very best with it, I hope that things start to improve for you really soon

Lots of love xx
 

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I don't know anything about it either, but hope it has all the desired effects and non of the undesired...

Katharine
 

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Hi Karen,

I'm really sorry to hear about this new development... :( However I hope that with the help of cytoxan and the iv steroids you'll be able to get things under control... :)

I started monthly cytoxan pulses last February and every time I get a 1000 mg iv steroid infusion with it; I also get steroid infusions in between the monthly doses most of the time. Yep, the dose for cytoxan has to be calculated based on something called body surface that docs calculate based on one's height and weight.

Re the pulse steroids, I think it's common to be wide awake afterwards but docs can give you something to help you sleep if need be; usually though it's not necessary as things return to normal really soon after the steroid pulse. Reactions like that are also kind of dose related for some people, so if you get 500 mgs you might be a lot less awake than if you get 1000 mgs if that makes any sense!

Re the cytoxan and hair loss, there is always some hair loss with cytoxan but that too is dose-related most of the time and also varies with people; do you know if you'll be on a low or high dose regime (usually I think low is about 500-750 mgs, i.e. one such pulse a month and high is around 1500 mgs a month)??? Cytoxan's effects are cumulative, so it starts working best 2-3 months after the first pulse for example, and that also goes for hair loss. In most cases so hair loss increases a bit after the first 2-3 months. I did lose some hair and after 4-5 months I decided to cut it a little bit shorter to strenghten it and that seemed to help a lot!

Try to take it easy for a couple of days after the infusion (even if you're on a steroid high!) and do try drinking loads and loads of water (and eating a little bit too).... Also I get zofran after every infusion as I can get very nauseated and what I noticed after the first couple of months was that it helps more to take them at regular intervals for the first couple of days (i.e. one pill 3-4 times a day) rather than when you feel the nausea coming on, as anti-emetics can actually stop it from coming on in the first place! My doc insisted that I take them regularly from the first infusion onwards but I was stubborn and only came around after a couple of months of not being able to eat for the first week or so after the infusions. Now I take the zofran religiously at regular intervals for a couple of days and don't really have any nausea at all!

Sending loads and loads and loads of hugs your way and keeping my fingers crossed that this coctail of meds will get you feeling much better very soon :grouphug2: :grhug: :goodvibes: :goodvibes:

:foryou:

Zoi
 

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Hi Karen.
I'm sure you'll get some good advice coming your way. I'm sorry I don't know enough to help.

Just wanted to send a sincere wish that you start to feel better soon.
This bad patch has been going on a long time.:worried:

Take the very best care of yourself:hug:
 

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I have 3 days of pulse steroids every 3 months. They keep me wide awake but the sleeping pills they give you do the trick. I hope it all goes well.
 

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Hi Karen,

I don't know anything about these meds but I want to send you loads of gentle hugs and wishes for good results soon.

Take care and remember we are all thinking of you.

:foryou:
 

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Dear Karen,

I know it's been a long while, but it's good to see you. I hate you are having such a rough time though. I have kept you as well as everyone else here in my thoughts and prayers...and will definitely continue doing so for you through these infusions.

I can't offer any advise for the cytoxan...but have had several 3 day mega-dose solumedrol infusions over the last 2 yrs. The infusions don't seem to "wire" me up as bad as the oral pred does. Of course, we aren't taking them for the same reasons therefore we could see a different outcome...I'm sometimes at a different mental status before they administer the med.

Just know I'll be thinking of you and keeping you in my prayers my friend.
 

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Hi Karen,

Hope the chemo went well for you (that is as well as it can go, it's no fun!). I've been away from the site for awhile. I always recieved steroids and did usually stay up most the nigh afterwards, but hard to say if it was the 'roids or just me wired up from the experience. My Doc. was VERY careful. I was in the hospital from 8am till midnight. He insisted I get lots of fluids after the Cytoxan, with orders to pee as much as possible. You want to flush the stuff out ASAP, don't let it sit in your bladder! My hair thinned, but I didn't lose too much. You'll notice a metalic taste in your mouth...or at least I did! Some things will taste horrible! Watch out for your white count taking a BIG crash. I ended up hospitalized for a week when the white count dropped to 10 and I caught a cold. The first time I started on a low dose and it got raise each dose "till I couldn't take no more". I maxed out at about 1500mg (had 1800 once and had a HORRIBLE time with it). Any questions feel free to PM me.
Best Wishes,
Eric
 

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Discussion Starter #11
My infusion last Thursday went relatively well. I received 1 gram of steroids and 1425mg of Cytoxan. I did get the metallic taste during the steroid portion but the infusion nurse had a bowl of hard candies to suck on and over power the taste, they worked as long as I had a candy in my mouth.

We were late taken in for the process but once it started we were out and on the road home 2 hours later. I was told to drink lots of water, which is normal for me so I just tried to up the consumption another notch. Friday was the worst day for me and then we had a pretty bad heat wave on Saturday and Sunday, that kept me from doing too much as we don't have air conditioning.

I haven't had to take my diuretics since the infusion. Today I am noticing some edema returning, I was hoping I would get a longer benefit on the edema than this. I will be keeping notes on the edema and how it does, so I can give a good report to the rheumy at my next infusion.

Thanks,
Karen
 

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Thinking of you Karen - take good care of yourself and I hope this is a positive step for you to feel well again.

Hugz, :hug:

Pam xxx
 

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Wow, in and out in 2 hours! In some ways your lucky and in others I'm not sure. My Doc. errs on the side of caution and makes me get all the fluids afterwards, he's very paranoid about the chance of this stuff causing bladder cancer, so chemo is a 16 hour day for me. Always interesting to see how different Docs. do the same thing in different ways. Ain't it wonderful when the treatment is nearly as bad as the disease itself?
So your retianing water? I remember my first time with chemo. Doc told me not to expect much for awhile. He was VERY surprised when about 3 weeks after my first dose I started peeing my brains out. I had a hard time getting any sleep as I ALWAYS had to go. Lost 30lbs in a week! It was all water, but I'd been on a 2gm sodium a day diet for months prior and had obviously lost fat, but put on water. By the time I'd got all the water out I went from 220lbs to 170. So I probably had about 6 gallons of water sloshing around in me before chemo. Sure felt good to get rid of that water!
Be careful now. Watch out for germs. Catching a cold after chemo is the WORST thing!
I know what you mean about the heat last weekend. I had Dodger tickets Sunday and went to the day game. Luckily my seats were in the shade, but still left early....way to hot out there! Hot weather and chemo do not mix!

Eric
 

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Discussion Starter #14
Eric,

I would love to lose 30lbs in a week, heck I would love to lose 30lbs in a month. I know there is a certain amount of water weight on me just not how much. When I was in remission I led a very active life and walked 10,000 steps a day easily, some days more than that. For the last 5 years I have been lucky to walk more than 1500 steps a day, some periods I didn't even break 1000 steps a day. My weight has gone up 50lbs over the past 5 years and not all of it is water.

When the cytoxan starts working I will have more energy and with the Enbrel doing a pretty decent job on my joint pain I would be walking more again. Hopefully one way or another cytoxan will be the path to weight loss.

Karen
 

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Hi Karen,

Just stopping by to say, I hope your treatment goes very well for you.
I hope you feel much better, after things settle down for you.

Love,
Sandy
 

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Hi Karen,

My daughter went through cyclo. Everyone covered most of your questions. She did loose almost all her hair, so she eventually got a buzz cut. She had 7 cycles last one in Feb.2008. Her hair has started to grow back but it is very thin, her head is very itchy and I can feel new growth stubble growth. She was quite sick for 3 days post, but they did give her medication for that. She stayed pretty much on the couch. They also gave her mesna it is a drug to protect her bladder before,during and after 2 doses.

She was on the 1000mg of methlprednisone as well, and didn't seem too bothered by it. She was perscribed ativian if she couldn't sleep.

Hope your treatments go well

Sharon
 
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