Hello everyone - it's been a couple of months since I reported on the cytoxan I am currently taking so thought I would give an update.

Had my 4th infusion Monday. Doc has increased amount 25% each of the last 2 infusions so am about to about 1800 mg (still officialy a low dose, but getting up there). For the first time, I had side affects. Was nauseous all day yesterday and slept much of the day. Didn't actually vomit, but definitely didn't feel like eating. Today is much better and ate a pretty good lunch.

As far as how the treatment is helping me, no news is good new (or at least that's what I told the doc). I'm completely off Cellcept (had been taking 3,000 mg/day for 12 years), prednisone is down to 10/day and am still working on decreasing it slowly, and mestinon usage is down from 60 mg every 3 hours to 60 every 6 hours. Even with all these medication reductions, my mg is better. My daughter says I'm an much more animated in my expression (she can see that side, I can't!) and I am talking with my hands like I used to prior to mg. I never really thought about the talking with my hands business, but it is true, I do tend to talk with them a lot! The biggest thing is that when I was watching TV earlier today, I realized I wasn't having DV!! I only lasted for about 10 minutes, but that is the first time in about 2-1/2 years that the DV has disappeared! Gives me hope that the cytoxan might be working on that area also.

Will let you know more after my next treatment.

That's neat! Have you had hair loss? Are they monitoring your blood counts?

I remember waking up the morning after my second dose of cytoxan and being able to drink from a straw normally and whistle for the first time in a decade. It was very exciting and from that moment I KNEW I was doing the right thing! The DV will likely be the last thing to improve. It was with me.

I hope you continue to have success.

Hi 4-eyes - No hair loss yet! Hoping that doesn't happen. They do a CBC and check my blood chemistry every time before I get an infusion. Doc doesn't want to take me to toxicty, just the max dose I can stand without a lot of side affects.

I'm so pleased to hear that you are doing well and are able to decrease your other medications. It is particularly encouraging to hear about the improvement (albeit brief) in your double vision. That has been my most persistent symptoms (8+ years), although I've only been on various treatments for about 2 years.

I'm keeping my fingers crossed that you continue to see improvement of your symptoms.

Cate

I'm glad things are going relatively good so far. I hope that continues. I know there are alternative meds to help with nausea, like mint. I'm sure cancer patients or a cancer forum would give you a lot of ideas!

I hope this pushes you into remission.


Annie