I didn't know that was how I would be getting my Chemo until the day they hooked me up to my port. I have followed your posts and truly admire your strength, it does bring hope and encouragement to others. he's three years now and we are hoping he is going to be that 5%. He's been told the five year survival rate for this very rare cancer is 5%. we had hoped the surgery would get clean margins, but that didn't happen. He's had surgery three times now and the drs say chemo is his only path now. No more radiation as he reached his limit the first time around. What is different this time is the drugs they are using and the way it will be delivered, thus the take home pump. My boyfriend has actually been on chemo three years ago, with radiation, and now is having his second recurrence of his cancer( esthesioneuroblastoma). Thank you for your response and support.this is a wonderful group of people. Stay tuned for the people here with their experiences in that specific treatment with 5 FU. They will have answers specific to him and his case. Feel free to bounce questions off us- and look to his Oncology Team, First, for all questions, and problems. Just know we are here and we know how hard it gets. I'm sure you are both a little apprehensive, about side effects and disrupting life but it's what we all have to go through on the road to defeating our cancer. I am glad he is getting started on the treatments. I didn't get the 5 FU via a pump but I do know that several people here have received it by that method and when they see this post they will answer you. Drove myself to and from Radiation sessions, and went to a couple stores looking for a pouch for 2 pumps/bags- Chemo gal had no clue, because they only had pouches for 1 pump and bag, and ended-up spending $5 Walgreen's to get a kids fibre-like lunch pouch that worked. I just made adjustments, slowed down for the 4 days. Remember the number to call was 24/7, and hope you'll have the same in case the pump quits on you, or any other issue happens. Remember being careful when I went to bed, but had no incidents with that. Bit of a hassle in that you have to be careful, but in the big picture it is not a big deal. Got on Monday AM, and bag was empty Friday AM before I went in, so I shut off one of them. Remember there was a shut-off switch that I accidentally enacted on one of them and had to make a phone call to the number they had given me. They'll give you a pouch to put the pump and bag of 5-FU in. I had the take home for both my 5-FU & Cisplatin.
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