Cytoxan - Oral / Will The Side Effects Get Better?


I have been taking oral Cytoxan100 mg/daily for 5 weeks and I have another 7 weeks ahead. I was wondering if anyone has taken this treatment and if the side effects will get better?
I am taking the drug for advanced stage Nile Disease (Minimal Change Disease) and am dealing with water retention anyway - but with the drug it is very hard to control - and the water pill (2x 20g Torsemite/daily) is no longer effective as before.
But the worst is the nausea that does not go away - I am taking Ondansetron - and it keeps me from vomiting, but all day long with - very short breaks - I feel nausea, bloating in my stomach, and overall live my days in a fog.
I have returned to work and it is just miserable to just get through the day.
In the evening I have no engery and usually go to bed around 7PM - and sleep all night.
I have not lost my hair (on my head) but the majority of my body hair (not complaining).
I know that this drug is pretty much my only chance for a cure - even just temporary - so I am hanging in there - but does anyone know if this will go on the whole time?

2 Replies

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It is a very potent medication that's used to treat cancer and autoimmune disorders, so no, it isn't likely that the side effects will go improve. You may also experience diarrhea, darkening of the skin and lethargy.

Did you try steroids, already? That's usually the first choice treatment for this condition.

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Hi thank you for your reply. I am not a candidate for the steroid treatment, because of other medical issues that came up all of a sudden.
I was stationed in CampLeJeune NC on active duty in the 80s and was apparently exposed to water contamination and my doctors think that it has caught up with me. I recently also received treatment for Graves disease, and when the chemo is done I will have to undergo treatment for liver damage (thanks goodness only minimal damage). I guess I will have to put up with it and keep telling myself that it will be better one day.

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