Hi all,
I know this is a long shot, since it's 'rare', with around 10 per cent of people having a reaction, but I was wondering if anyone else here had a bad reaction to ifosfamide?
I went from no dramas during my first R-ICE treatment (other than mucositis) to reacting really badly to the second dose of ifosfamide.
For more 24 hours, the nurses gave me the antidote to ifosfamide (which we were calling Smurf Juice, because it's so blue!)
Basically a nurse noticed the issue on the Sunday morning and by Monday morning I was back on track, but for about 24 hours, I was struggling to see, hear, walk and talk. They were monitoring me constantly for coordination, getting me to walk, answer questions about where I was/who I was/what year it was, etc.
Most of the nurses hadn't seen it before, but a couple had and said it was rare.
More than a week and a half on, I'm back to normal, and the doctors tell me that I won't have long term effects. The positives they said were that A. the first dose of R-ICE had put me into remission and B. I never have to have ifosfamide again.
Just wondering if anyone else has had this happen? Took me ages to feel strong and I ended up dragging my IV pole around the ward to get my legs moving once I could walk again.
Can't fault the hospital (ONJ in Melbourne) or nurses for my treatment, even though it was pretty damn scary. And I did ask one of the nurses at one point if I was going to die from it. it was that bad.
I feel lucky to be on the other side of it. The haematologists tell me that it won't impact my overall treatment. I'm hoping for nothing but good news after I have the SCT next month.
Hi again , sorry to hear about this unfortunate bump in the road. I did not have ifosfamide so can’t help but good that you won’t get it again and that you are back on track for your SCT.
Keeping everything crossed for next month. Do you know the conditioning treatment you will be having to kill your immune system?
Do keep in touch.
Out of the two BEAM us most likely. I did not have BEAM but did have the ‘M’ as part of my FluMelAlem30.
I did have a reaction to the M (see my profile) it would be worth having a look at this thread Melphalan and Ice
This is info on BEAM
You will see in the thread that the two weeks leading up to the M and all the way through until I got out of the unit I was using a two pack oral mouth rinse called Caphosol.
I set my phone for every 3 hours to make sure that I was doing this all day. My head consultant said that the Caphosol was rather expensive but if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to over come any bad mucositis. I did well with only one very small area developing and it was not a problem.
I was also determined NOT to have a feeding tube put in due to not eating because of mouth problems.... and I won.
