Anyone take Cytoxan chemotherapy?

I just had my 3rd round this week and have been really sick from it.  Wondering if anyone else has experience with it and what you've done to help the side effects.

I did it back in 2000 for 18 months. It made me sick, too, so I complained to my doctor. He prescribed me an anti-nausea pill that I would take about an hour before I began the iv treatment. It worked great. Hope this helps.

Robin

Thanks for the advice.  I did Cytoxan for over a year back in 1999 but I don't remember these side effects.  After one  month of treatment I lost all my hair.  The nausea and vomiting this month were really bad.  I'm not doing the mesna this time and my bladder is really irritated.  I need to talk to my RA about that too.  Thanks again!

Hi there,

I have been on this site before my daughter who was 17 last year suffered from CNS Lupus that was affecting her brain.  High doses of prednisone wasn't helping her condition so she started cyclophosamide in August 2007 and had her last Feb 6th 2008.  She kept her hair till half way and then she lost it.  Rheum said it would just thin, so that was disappointing but she took it in stride.  She now has about two inches of hair, very thin but she looks cute all the same.  She was very sick after chemo, took medication perscribed and they helped a little, she just stayed on the couch and perservered.  Mesna was given before and after Cyclo by IV then she took mesna again so many hours after Cyclo at home by capsule(we prepared the capsules).  This is very important as it protects the bladder.  Cyclo can cause bladder infections and even cancer long term so it is very important to get perscribed.  She is now trying to get used to taking her newest drug Cellcept, it made her vomit for a few weeks while she build up the dose and is now just nauseated with headache at 750 mg.  She will move up to 1000mg in a day or so.  She is right now suffering again with sore joints, daily headaches and extreme fatigue plus extreme constipation(she has been hospitalized many times for this).

It has been a difficult road, but so far the cyclo did resolve the serious effects of Lupus.  Lets just hope cellcept keeps her in check.  I hope your journey with cyclo goes as well as can be expected.

Sharon

Sharon

Hi Babs,

That must be difficult with 4 children, dealing with a illness.  I am a young 47, I fractured my hip in 2002 the first summer we had our pool, fell the wrong way tore the inside lining of the socket and fractured the socket bone.  I had a hip scope done to smooth our the socket as it was very painful.  It was difficult to find a surgeon that does this procedure in Canada.  I travelled 10 hours to find one, and I did the homework to find one I might add.

I was told also on follow-up that I should have regular checks on my hip, as I have also been on steroids many times in my life, now on endocort a softer steroid.  I usually get bone scans to check bone density as well.  I have  autoimmune diseases that fatigue my body on a daily basis, it's hard with children, job, housework etc.

I also know how much Lupus effects my daughter who was so energetic, athletic and young and full of life and to have that taken away from her.  I would love to take her pain on myself than to see her suffer.  I guess us mothers need to be strong.  

All the best to you.

Sharon   

 Yes, I did some homework, I had a hip arthroscope first which is a MRI, with dye (a radio-isotope) injected into the joint.

It was day surgery, the doctor partially dislocates the hip and is careful to protect a improtant nerve there. I had allot of students hanging around I am sure I was the lesson of the day.

I went home a long drive ahead of us, they suggest spending the night at a hotel, I opted to be on drugs and sleep most of the way home and get into my own bed.  I was vomited once at the begining and was fine.  There was still freezing in the joint so I wasn't too bad with pain.

The discomfort was minimal, with medication.  Got around on crutches, I opted to stay off the hip, but you can weight bare when you feel comfortable.  One thing that concerned me initially was that my pelvic area was completely numb, I worried about that nerve they talked about.  The feeling took about a week to fully return.

I would suggest some help to come in to take care of your wee ones, to give yourself some healing, it will be a couple of weeks before you are completly somewhat pain free.  I was very cautious, as I wanted this to be successful.

I sometimes feel very rarely a little twinge from the hip if I stand a certain way, but the surgery has been very successful, I had my doubts. 

If you have any questions don't hesitate to ask, let me know how you fair.

Sharon

Good Luck,

Yes tell me how it goes.  Take care of yourself.

Hi Mom:

I took 9 months of oral cytoxan and 3 months of the IV cytoxan. I have to say that the cytoxan did help with my lung issues, but my oncologist believes that the cytoxan is what has caused me to have MDS or blood cancer like leukemia. I'm now going to need a bone marrow transplant if I hope to stay alive and live to be an old lady. It also ruined my bladder and it's a mess, I have blood on and off all the time in my urine and the scope they did of my bladder showed that the bladder is totally ruined.

I hope that your experience with the cytoxan is better and you have no lasting serious affects from it. I have troubles with weight loss and vomiting while on it. I lost all my hair and my white count and red count was always very low. I had a serious problem keeping my counts high enough to get out, I was way way to immuno suppressed.

Wishing you the best, and if I can answer any other questions, please feel free to ask.

Take care,
Barbara

Hi Momof2 !! I hope this gets easier for you. *sigh* I remember when a couple of the other members were receiving cytoxin and it didn't sound fun. Don't forget that you can also use the Chat Room if you want to talk to someone. (((((((((( hugs )))))))) I hope you at least feel better between treatments. Keep us posted! Blessings!

Hi there,
I did Cytoxan every month for almost two years and then decided to quit. I was off for about 6 months and started doing it every three months and now am back to every month. I get mezna,decadron, and zofran by IV before the cytoxan and after it and it helps me I find. I also have my promethazine at home to take prn. I was lucky and started off with very thick hair but it's blonde so when it got really think I just cut it very short. Since my hair is curly it kind-of worked but I've been trying to grow it long again and it's pretty long now (at shoulders) but I'm sure it'll thin again. But if it helps I guess it's worth it..... I work in the cancer field so I knew going it what would really happen and maybe that's why it wasn't as hard for me. You know they do have suckers (if u want to try something else) that help with nausea (a lot of people call them "preggy pops" -- I see them with my patients. 
Good luck and I'll keep you in my prayers if you don't mind....