Hi Deb,

When did you have the tube placed? I've had mine since Feb 2018 and was told it needs to be replaced every 3 months (which I do religiously). I've had problems with nausea (from the chemo) so I take anti-nausea pills every morning and every afternoon to keep it at bay. I've also had problems with granulation (tissue and blood vessels that form around the feeding tube) which is extremely painful. The only way to get rid of it once it appears is to use silver nitrate (prescription) which is also extremely painful but once it calms down it does get rid of the granulation. Keeping the area dry around the tube combats the granulation. If movement of the tube bothers you, have you tried taping the tube to your body so it doesn't move (swing back and forth while you walk, etc)? That works for me.

I hope this helps you!

Susan


Susan
04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive
05.12.16 Resected T2, N2b, M0
05.24.16 Rad, Cisplatin
10.03.16 Clear PET
04.11.17 Clear PET
06.09.17 1st recur
06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft
11.09.17 2nd recur
11.30.17 Nivolumab
02.06-16.18 Brachytherapy
06.12.18 3rd recur
06.12.18 Lt axillary lymph node SCC
07.05.18 Pain pump placd
08.23.18 Pump removd
10.29.18 PET-CT responds to treatmnt