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Starting Cytoxan...Need Advice

894 Views 8 Replies 6 Participants Last post by  Maia
I've read different stories about this treatment Cytoxan in particular, but wanted to get more feedback from you who had this treatment in the past.

I'm 26yr old male, and I will be doing a sperm banking before I start this just to be on the safe side. I've heard some negative results with this medication so this way I get some sperm saved to start a family later in life.

As far as other side effects, my understanding is it varies from person to person, but it seems like drinking lot of fluids when on Cytoxan helps? Is there any other things that I should consider while being on this medication?

My Doctors did kidney biopsy on me last week and found out that I'm at the level 4, therefore kidney failure happens at 5, so they want me on this ASAP to save the Kidneys. I don't have much time so I will act on this soon. In the meanwhile they have me on IV Prednisone i think it's like 1000mg or something like that, and I'm taking cellcept as well to buy some time while I figure out which doze/treament of Cytoxan to take.

Doctors were talking about IV cytoxan or even Oral cytoxan for short term but there is this new protocal that they are studying which is stronger doze but shorter time (3months). Im not sure which route to go, or whic protocal to follow, but the standard protocol is 6 month treatment, once a month IV infusion.

Well that's that, not sure what to say but I'm not too excited about this. The other part of me is saying GO FOR IT, because there is that 50/50 chance that it could/might help and it would make it worth the try.

Please share any advice/concerns/suggestions or whatever else that I might not know?

Adis T.
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Hi Adis,

I'm sorry to hear about your kidney problems :( , but am very happy to see that you seem very organized and knowledgeable about starting cytoxan and about what the treatment entails! :)

Going to a sperm bank before you start treatment is a wise decision. Cytoxan may or may not empair your fertility and there are a lot of factors that play a role in this: age, duration of treatment, dosage used etc but since one never knows if their fertility will be affected or not going to a sperm bank ensures that you can have a family later in life whatever happens.

Re the side-effects: Yes drinking lots of fluids especially during the first 24 hours after an infusion is very important in helping flush cytoxan out of your system. There is a med called Mesna that is often given together with cytoxan (right before or right after depending on the protocol used) and that helps protect one's bladder from the possible toxic effects cytoxan may have on it. You might wish to discuss the possibility of receiving mesna with your doctors if it's not already on the "schedule" for you.

My rheumy and kidney doc always told me to drink a lot of cranberry juice between infusions and right after cytoxan too; cranberry juice being one of the things that help protect the bladder against UTIs and other nasty things. Again this might be something you could discuss with your docs as I don't know if cranberry juice would be ok with your nephritis or not.

After a cytoxan infusion you may also have some nausea, but you will get anti-nausea meds both intravenously in the hospital and in tablet form to take home. I was usually nauseous for 3-4 days each time, but I took zofran (anti-nausea med) and was ok. During those 3-4 days after an infusion I had frequent, small meals of "light" (slightly bland) food too so as not to cause further stomach upset. This varies greatly though with some people having very little or no nausea at all after infusions!

Lupus nephritis is usually very responsive to meds and iv pred can help a great deal. Also cellcept is one of the most effective meds used to control lupus nephritis, with some studies showing that it can control nephritis as well as cytoxan. Calculating one's cytoxan dose is fairly easy business, it's just a matter of calculating one's body surface area (this is done using your height and weight) and just deciding what protocol will be used (high dose vs low dose and monthly infusions vs fourthnightly ones). It may be that your doctors are waiting to see whether cellcept will bring your nephritis under control (cellcept starts working about a month after you start taking it) before putting you on cytoxan...?

I haven't heard about the stronger dose protocol (the three month one), but I have been through the standard protocol with high dose cytoxan and then some and while I cannot advise you which intravenous protocol you should or shouldn't follow I will say that before you take oral cytoxan if in the end that is the med it comes down to, please discuss it in detail with your docs as oral cytoxan can be particularly toxic. Again I cannot tell you what to do about it, it's just I've been advised against oral cytoxan many times by my doctors.

Re the not being excited about this, I think it would be rather worrying if you were excited about it! No one is excited about cytoxan and I, for one reacted with a lot more apprehension (even a slight panic and mayhem!) at the idea of monthly chemo than you seem to have at the moment...!

Cytoxan though is what rheumatologists often call "the big guns" and for some people can be incredibly successful in bringing their disease activity under control...!

Do share any questions you may have about protocols and treatment options with your doctor so that together you can make an informed decision about a course of action! :)

Hope whichever protocol you follow helps you loads!!! :bigsmile:

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Hi Adis,
Well you've brought up a subject I'm very familiar with so I'll give you my experience. I got my Lupus diagnosis when Nephritis set in..after years of troubles. My condition before I started chemo was very bad. BP was VERY high, retaining water like crazy. My pee (what there was of it) looked like dark beer. I was stage IV. I felt horrible and really wondered every night when I went to bed if I was going to wake up in the morning. Chemo totally turned things around. I had treatments once a month for 6 months, once every three months after that. Had a total of 10 treatments the first time. I experienced some nausia, was pretty tired afterwards. I had chemo on Fridays and was back at work Monday. Chemo started out pretty easy, dose was low. Doc. kept raising the dose till I got to my limit (if I remember right about 1800mg). I had a few very good years after the chemo, but it did return. Four Cytoxan treatments cleared me up again and it's been over two years since the last round.
It's important to drink lots of fluids afterwards. My Nephrologist had me in the hospital at 8am. I got IV fluids, steroids, nausia meds, Cytoxan, and then fluids till MIDNIGHT. I was sent home with strict orders to keep drinking fluids, pee often (DON'T let it sit in your bladder!) and if I couldn't hold down fluids, go back to the Hosp. to have an IV put in. Bladder cancer is a risk with this stuff (and it's a bigger risk with the oral meds, I recommend the chemo). Also a week or so after chemo your white count will probably drop big time. AVOID GERMS! I got sick once while my count was down and ended up in the Hospital for a week.
Now my Nephrologist says no more Cytoxan for me. Next time Nephritis returns (I'm hopeing it wont, but imagine it will) I'll be trying Cellcept. Doc. feels I've had enough of the Cytoxan. Maybe you'll have luck with the Cellcept your on and will not need chemo. I know I'm a bit worried about trying Cellcept next time. I've had such good luck with Cytoxan I hate to give it up, but I imagine we'd use it again if nothing else works.
Good luck with this. I was very worried my first time. Had no internet back then so I was totally relying on my Doc. and was pretty scared. Wasn't as bad as I thought it would be and got me to feeling "normal" again. I even got back in shape afterwards and did a hike to the top of Half Dome in Yosemite (5000 feet up, then down, 17 miles). Felt great to be on top of that rock! Now, 10 years later, I'm trying to get in shape to do it again.....yes, I'm a little CRAZY!

Best Wishes,
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I've noticed that the cytoxan protocols have really shrunk over the years. When I had my first series of the stuff way back when, the usual protocol was monthly for six months, then three monthly for a year.

Over time this turned into the more usual 6 month protocol that is the norm today. My last series of it was a 6 month one.

So, sounds like there is a new protocol - no clues if it is better, worse or the same, but, having had many series of the horrible stuff I would say that the sooner you get done the better, so the three month deal sounds great to me.

These days I only have small doses of it (500mg) after each dose of rituxan, which means I still haven't entirely got the stuff out of my life.

The good news is that many do really really well with it for kidney problems, and most people tolerate it better than I do.

best of luck with your treatment

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Cytoxan Update!

Just want to update you on my status.

After meeting with my Kidney doc yesterday, apparently there was miss-understanding about the whole ordeal.

You know those kidney levels I was talking to you about 1-5 and how they stated that I’m at level 4, well they were referring to Lupus levels, meaning how inflamed my cells are and they also go with the same scale 1-5.

What they were referring to was how active/inflamed my cells are; which is level 4, and that it attacked the kidneys. Now if we don’t treat the inflammation fast they kidneys will go through its levels 1-5 and fail.

The good news my kidneys are OK or at stage 1, but since they are inflamed they are not functioning right at the moment. Once we get the inflammation under control and set those cells straight, the kidneys will go back to its normal function and hopefully be healthy.

On top of all that they are re-considering the standard protocol (chemo therapy) and sending me to Oregon Health Science University to try of this new drug that is much less toxic then chemo and has very little side effects. Basically they are saying since I'm on CellCept currently that they are considering keeping me on Cellcept instead of Cytoxin since Cellcept is less harsh when it comes to side effects, and then add this new medicine which doesn't have much side effects. This way this will protect my sperm and all that fertility effects that are know with Cytoxin.

So I'll be part of this research study so maybe this is the new thing that will replace the chemo/cytoxin standard treatments.Monday I will start the treatment at OHSU and in 6 months we’ll re-test to see where I’m at. Will keep you posted.

So yea, it’s a big relief...phewww
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Hey Adis!

What wonderful news and what a relief that must be for you that your kidneys are not permanently damaged and that you don't need to go on cytoxan right away!! :)

Do you know the name of the new med you'll receive? Is it rituxan (mabthera)? That is one of the meds given sometimes either if cytoxan fails or instead of cytoxan and has shown very promising results for lupus so far...!

Ah well! I hope the research study goes brilliantly and that whichever med you get helps tone down that inflammation fast and for a long time!!!!

Hi! I'm sorry you are feeling so badly. I had cytoxin over a year ago. It helped me greatly! It sucks while you're actually getting it but I felt pretty normal again within couple of days. This stuff really saved my life and I hope to works as well for you. As far as side effects I had very few. Little sick to stomach and tired but kept my hair. Take good care and I hope it works out!
Hey Guys,

Well after a lot of thinking/reading in regards to this new experimental drug i think I'm re-considering about being part of this trial/treatment with the new drug. The drug name is Ocrelizumab, and I guess it's similar to the Rituximab (yet key word is similar, therefore not same) there is a side effects on there that is quite risky for me to take at this stage and that's why I think that Cytoxin treatment might be the best fit at this time.

This is what changed my mind about going with the new drug after reading the informational packet that they provided to me:
"Some subjects receiving rituximab (drug similar to the study drug) have developed serious viral infections or occasionally had a flare-up of an old infection. Most, but not all, of these subjects had cancer and they were on other anticancer treatments, which made them more at risk(understandable). In some cases, these infections occured over 1 yr after rituximab treatment and resulted in death. A rare and severe viral infection called PML (Progressive multifocal leukoencephalopathy) which causes braind damage and is almost always fatal or causes severe disabiltity has occured in subjects with cancer and autoimmune diseases such as SLE. This disease can occur in the subjects even if they are not receiving rituximab treatment, but have also been reported in subjects who are receiving rituximab. It is not know if rituximab increases the risk of this diseaese. Two of the subjects who developed PML were taking rituximab and other immunosuppresants as treatment for SLE, and both died".

So when I look at my current healt status, my age, my condition etc, I figured that Cytoxan might be the best route for me to take, even though all the side effects are present with Cytoxan t's still is less risky compared to this new "experimental" drug. On top of all that when they mention the PML infection and causing some brain damage, too me brain is very important, and everything else bellow the brain can be tweaked/fixed/tuned, but once you mess with the brain which controlls all the other parts/functions/etc then that could be a huge risk. Another thing with the experimental trial is that there is a Placebo involvement, meaning that you might not be getting the treatment that you need and I dont want my condition to worsen since I need to act quick before my kidneys take a beating.

The doctors were offering me to do the Euro-Lupus Nephritis Trial - which is i believe 6 pulses of fixed low dose (500mg) intravenous cyclophosphamide given every two weeks or six monthly doses plus two quarterly pulses. Then after that they would put you on other medication either cellcept, azathioprine, or whatever is the best fit.

Seems like some of you had this treatment already and worked fine, so with that said I think i'm headed that direction and we'll see what the side effects and success is.

If there are any other guys that can share their Cytoxan treatment, I'd like to hear from you. Has any guys tried getting a girl pregnant after their Cytoxan treatment? I did bank the sperm just in case, but was curious what the outcome is when ti comes to sperm damage.

What do you guys say on all this, agree/disagree with me?
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I would probably make the same decision as you. Rituxan has not been proven to be of benefit yet in treating active lupus nephritis, and is instead a treatment of last resort (more or less). Partially due to high cost and it's relative lack of success so far in proving it's effectiveness in clinical trials. One study on Rituxan was completed recently with rather disappointing results although it's hard to know why.

Cytoxan has helped so many people reach remission I would probably go with it too. Good luck to you - keep us posted on how you do.
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