Hi all in my last post i said that votrient hadnt worked on colin and he was pulled off it...
He has just come home from a 5 day stint in hospital having a high dose of ifos, to say this is making him feel really bad is an understatement.
Has anyone on here had the high dose of ifos and can you please give me some feedback on if it worked thanks you
Steph.
Do you know what dose he is getting and how many hours is the infusion each day? Is he having unusual side effects so far? I've had high dose ifosfamide in 2003, 2008 and 2011. The treatment was a little bit different each time but always longer than 5 days.
I've been on ifosamide a few times with different variations. The first time in 1997 it was given in the hospital for one week at 9 grams per sq. That didn't really work. Then I went to a Dr. in 1997 that administered the drug as an outpatient at 18g per sq. continuous over a 5-day period. More recently in 2012, I was on a 14-day continuous cycle given 10,500 mg over a 7 day period and changing bags at day 7. For each period, I carried a 2-liter bag. The drug worked in 1997 where it slowed down the mets and growth of my tumors and pretty much allowed me to have some stabilization even though I still had the tumors and I was able to go on Gleevec. After that I had about 5 lung surgeries until 2005 to remove tumors that started to grow. Last year, the Ifos worked again and has provided me stabilization...I have about 9 tumors in various areas. Now I'm on Votrient which is working and providing my stability.
Ifos is really tough, but it worked for me. Response to these cancer drugs vary as you can see. My No. 1 issue with Ifos was fatigue, low WBC's and sometimes I had nausea, but the meds like Compazine and Kytril really helped. Zofran didn't help me much. I completed 7 rounds of the 14-day cycle and I developed peripheral neuropathy in my feet. So far, I haven't had any new tumors appear. I'm just dealing with the side effects of the Votrient drug. I'm just learning to deal with the neuropathy because I think it may be permanent damage. I remain positive and just take one day at a time!
Keep Hope Alive!
i've had the high dose of ifos in 2009, 2011, and now. this time the dose of ifos is (2400mg/m*m/day) *5 days. the whole treatment including ohter medicine. i've try dont use chemo and then the tumor growing very fast. and last time the ct shows the tumor shrink. so i think is the best way for now.
I did 3 rounds of Ifos for mine and it worked well. Like ImaFighter91, I got a 2 liter bag and did it as an outpatient. I did 16 days with a 24/7 drip. I can't remember my dosage, but everyone said it was ridiculously high.
The ifos always had good results for me, and was much less harsh than the other adriamycin/cisplatin combo they had me do. But everyone is different. I had a friend in the cancer center who said for him it was the exact opposite. He had a rough time on ifos and preferred the adriamycin/cisplatin combo. I think it just depends on your body and how it reacts.
Saying it wasn't as bad doesn't mean it wasn't bad though. It definitely gave me some chemo brain when we sped it up and can zonk you out as well.
I hope it works for you! My doctor said he never had anyone not respond to the ifos doses he gave in 30+ years of specializing in Sarcomas.
All the regimes and treatment with Ifos seem so varied. Gary had it second time around and it shrunk the tumours for a while but did not get rid of them. His appeared to be fairly fast growing to me compared to a friend of ours..his are very very steady and slow and his treatment regime is different again. Gary would go in for three days at a time every 21 days..this time he completed four or five cycles I think as he felt so rotten and despondent. His oncologist felt after X-rays that because we couldn't see them that that was as a god a result that we would get. It was very hard going for him. I personally feel he would have coped better if his previous surgeries were not so impactful but he had significant pain issues from his spinal surgery which affected his ability to withstand the chemo. He was incredibly courageous and persevered a long time but I know he hated chemo. Everyones stories are so different only your man can decide what he can and cannot do.:( its tough..xx
colin is on a 5 day cycle every 21 days he was ok on day one but day 2 he started to feel very sick and exhausted and also very aggitated and these all got worse with each day that passed but then on the other side of the coin he was craving weird foods lol if he was a woman i would have thought he was pregnant.
Now that he is home its like is trying to adjust to his home lifestyle it is so hard to see him like this.. as i said to him yesterday i wish i had a magic want to zap all the tumours out of him
sorry elodie i never answered ur question... i am not sure of the dosage but the chemo bag itself is on for 8 hours but the whole cycle takes 24 hours
Garys personality changed when he was in chemo( read chemical here).He also got agitated and upset.His personality changed quite dramatically at times but he came back and we both developed strategies for the next times.It was tricky.What helps you get through is having an Xray and seeing signs of the chemo working.love to you both
I remember my very first cycle was quite terrible. The next were easier. They did increase my intake of fluids (gave me an additional bag with the chemo). It could have been what helped...
Steph,
It's probably not the chemo that is causing the agitation and craving of the foods. It's the high dose of steroids that he receives with the treatment. He's probably given dexamethasone. This is the normal steroid protocol given with chemo. I remember being so very hyper-sensitive after the treatments as well as being hungry. The dex helps with nausea and to protect the vital organs such as the kidney and liver from the chemo.
Yes, and it makes you very crazy! The Ativan helps with the irritation bc there were times where I felt I wanted to jump off a bridge. It was the worst feeling. I had to pray a lot and walking and some form of exercising helped. But, I do understand what he's is going through. Hydration is extremely important. It's not easy! Hang in there!
I finished the 5th of 5day inpatient stints on May 29th, these occured every 21 days. I was given 4g of Ifos with the Mesna each of the 5 days for about 3hours. I was also given 40 mg of Dox each day during the first 3 days over a 24 hr period. Yes, I felt crappy and had to pee every 30 min (no catheter) throughout the treatments. The thing is that it worked! It shrunk the primary from orange size to golf ball size and all the mets are not viewable. I know it is not gone, but maybe it will stay quiet for awhile anyway. I would do it again just to get the extra time on my feet. I completed my 3 rd mountain running event yesterday, and although slow....I am doing what I love. I liked the scopaline patch, zofran, and oxycodone to help me through days the worst days 3-7