Cytoxan

[mailman]

Came back from the neuro and he wants to try a low dose of cytoxan, 5 or 6 grams for 5 five weeks. Has anyone had this before?

[powder pig russ]

I had a total of 12 grams administered over 6 months called "pulse" therapy. 5 weeks seems more like the schedule given to cancer patients like my fiend who took it for breast cancer. I believe Pestronk's protocol calls for the "pulse" protocol.

Russ

[mailman]

Dpd you have any side effects, like loss of hair? How long was each session?

[mailman]

Dpd you have any side effects, like loss of hair? How long was each session?

[starlight]

Hi Mailman,

I had the 6 month course of Cytoxan last year from Sept. to Feb. It took a few hours for each session once the IV was started - I have bad veins, had a port placed and had problems with the port so it wasnt used.
I have a ton of hair, but yes, It did thin quite a bit during the course of the treatment. The other side effects I had were fatigue (especially the 3rd &
4th days after the treatment), some nausea, but no other GI problems. I did gain weight because of the steroids they use before the Cytoxan, and also had muscle aches and pains due to the Neulasta given after.
Let me know if you have any other questions.

Best of Luck to you,

Linna

[powder pig russ]

Mailman

Complete hair loss is more typical of shorter (6 week or so) cancer treatments. I did find that my hair thinned during the treatment but this ws minor compared to the nausea and femoral line inserted each month for the plasma pherisis (similar to dialysis). I chose not to have a port inserted because I wanted to still be able to take a bath and feel human after each infusion.

Nausea was the most uncomfortable side-effect. For me, it was like a really bad hang-over that went on for 3-5 days but without any memories of having had fun to feel that way. And then you have to go back 4 weeks later to do it again. They can give you REALLY good anti-nausea pills (Zofran) but they're REALLY expensive (but worth it).

While I regret receiving no therapeutic benefit from the chemo, I am glad I did it because there's no way I could have found out it didn't work unless I took it. I would have always wondered it there's something else I could have done.

Good luck. There are some interesting variations on the therapy that seem to work (IVIg & chemo).

Russ

[mailman]

He said it was a low dose and very little side effects. Maybe It is 5 or 6 grams for the five week session [1 gram a week] Well, he said we'll try it in june. I'm getting an infusion of IVIG Jan. 9th so he wants to see how I make out with that.

[powder pig russ]

Sounds like a treatment strategy different from the 6 mo. regimen is emerging. Enjoy the ride.

[mailman]

Slap me in the face and call me Sally. Had 80 grams of IVIG today and when my neuro came in, I asked him about the cytoxan again. My mistake [sometimes I don't listen] It is a course of 1 gram a month for 5 months. Anyhow, when I got home after the treatment, I came up the stairs without my right leg hurting, thats a first. Wait and see from here to the next few weeks what happens. Sorry for the wrong imfo.

[mailman]

Just had my first cytoxan on tuesday. It was 1 gram and I am going to have it every 4 weeks for 5 more months. My mind it playing games with me. I think I am scared to try this and very nervous. Can anyone shed some light on how they felt after the first treatment.? What they expected? Any information would help. Thanks Rich

[powder pig russ]

How do you feel after cytoxan? Well, you shuld know by now - lousy. I compared it to a REALLY bad hang-over that goes on for days without any memory of ever having had a good time to get the hang-over.

There are a range of tolerance levels but I've never heard of anyone likening it to Rituxan. It's poison ('toxin' is in the name) and you body will react accordingly.

Russ

[mailman]

Hi everyone. Just had a checkup after my 4th cytoxan treatment. Gained strength in my right and left hand. Can stand on my toes, which I couldn't before. No real side effects. 2 more treatments to go. Neuro said he has had a couple of patients respond very well and to give it time to work. I had to try it, because if I didn't, I would not know if it would help me. I am pleased so far with the results.