Stopping Cytoxan Early

[Green Grass & High Tides]

I'm thinking about cancelling my last two doses of Cytoxan. My first infusion was 1200mg, 2nd 1400mg, 3rd, 1600mg, 4th 1800mg. I was sick for three weeks solid after the 1800mg. My doc wants to see my wbc count come down more. He thinks we have the disease on the run, blood work looks as good as it has in 17 years. And so wants to ramp up the last two infusions to 2000mg and maybe 2200-2400 for the last one. Sinus, Lung, Eye and Ear involvement are all improved. Fatigue and weakness are horrible but I had a wegeners stroke so it may be that. I still have joint paint, cns issues and Gi involvement. Serious stuff but improved and I'm not hospitalized currently.

Is there efficacy in higher doses? For how long?

Is 2 more months of severe nausea and bed life worth the trouble?

Any help here is appreciated.
Tom

[Birdie]

Any help here is appreciated.

Tom,

Until your post I didn't know cytoxin was given that way, so I'm no help to you. You have my sympathy based on the experience of 1.5 years of 150mg a day.

Gary

[Bloom]

Hi Tom,
I had 6 doses of IV Cyclophosphamide. The schedule was every 3 weeks. The dose was 900mgs, it was based on height and weight, I am 97-98lbs, so it wasn't nearly as much as as the doses you are having. I was told that each dose gets tougher, so I guess it must feel a lot worse for you when the doses are increasing. I don't know about the efficacy of high dose cyclophosphamide. My Dr said it was better to give it IV because you only felt sick for a few days, but this is clearly not the case for you.

I had IV Ondansetron infused before the IV Cyclo was adminstered and was given Ondansetron tablets to take for 2 days afterwards, when the nausea lasted for longer than 2 days they gave me more. It did help with the nausea.

I also had weekly acupuncture sessions which I believed helped with the nausea and fatigue.

Talk to your nurses and Dr's about your nausea and fatigue before your next dose. You've come through so much already.

Best Wishes

Bloom.

[drz]

Is switching to oral an option? I know my doctors started on IV CTX but then switched to oral tablets since they thought it more effective and easier to regulate and adjust.

[Green Grass & High Tides]

The doc chose the I.V. CTX route, I believe because I had GI involvement and bleeding w/ daily nausea so the tablets may be worse for that? Also my current doc said that it's easier to protect the bladder from cancer and reduce other long term side effects of cytoxan using the I.V.

I'm planning to go ahead and take the next infusion and see if the wbc come down more. No matter what I only have 60-90 days of cytoxan sickness. If at 90 days I had bleeding in the brain again I'd always regret not trying the full course...

Ya'll are awesome! Thanks much for helping me hash this out. Ran out of propranolol the other day and I just can't think straight on prednisone without that stuff. Hard to add 2 and 2.

Stay well,
Tom

[Birdie]

The doc chose the I.V. CTX route, I believe because I had GI involvement and bleeding w/ daily nausea so the tablets may be worse for that?

If it helps any, I only had nausea on oral cytoxin if I didn't eat before taking it. A slice of toast was enough. Otherwise the nausea was mild and unproductive. Didn't actually loose my breakfast or other meds.