Hi everyone
I'm now 9 weeks post treatment (6 weeks chemo-radiotherapy; tonsil cancer T3N0M0) and at my six week (7 1/2 week) review was hugely relieved to hear there's no sign of disease on examination.
I made good progress in the early weeks but this has stalled over the last month due to worsening pain in my tongue. This is stopping me from eating much at all and I'm heavily reliant on fortisips through the peg.
Pain relief wise, I'm on paracetamol, a low (and reducing) dose Fentanyl patch, and now pregabalin for the last week. I'm still using oramorph several times a day.
I think the pain is due to the RT directed at the base of my tongue. It's been difficult to cope with and hurts if I talk as well as manipulate my tongue when eating. Drinking is ok.
The docs are trying pregabalin as they think this could be nerve pain, and the dose has been increased after the first week, which I'm hoping will help. I'm doing my exercises including the base of tongue ones in the hope that it might ease once the muscles get back into shape. I've also got some lymphadema in that area and I'm doing the SLD massage to try and help with drainage. I had no lymph node involvement but they were treated on both sides.
I'm really interested in other people's experiences of this kind of pain and if it eased off, anything that worked etc.
Thanks in advance
Polly
