A few months ago, I was diagnosed with Stage 4 tongue cancer, then within a few weeks I was off work and getting daily radiation and weekly chemo treatments, which went on for seven weeks / 35 radiation sessions. I finished the treatments May 15. I'll find out from the PET scan in a few months just what if any cancer remains.

I'm joining now because I've been on all-liquid diet for most of this treatment due to mucositis, and even drinking liquids is very painful for me. My doctor has been trying all this different pain relief stuff, and my head is spinning from it all. Most recently, he has me using Fentanyl spray for "breakthrough" cancer pain. However, this has not worked well IMO, and I wanted to see what other people were doing about pain and, in particular, if any were using Fentanyl spray and, if so, how that was going for them.

I'm sorry to hear about your cancer diagnosis and subsequent treatment. I finished my treatment two and half months ago and have my PET scan in 2 weeks. While the pain I went through was bad it never got so severe that I needed fentanyl (I used low dose morphine). I managed to eat throughout my treatment, though towards the end I was on soft foods. But it would take up to an hour to eat sometimes because of the pain. I used to use oral lidocaine before eating to lessen the pain, but it did not always work well enough.

I would advise you consume enough calories (and protein to help with healing) every day. Stay hydrated too.

Hi ken, so sorry about your diagnosis. I too had stage 4 tumour in my tongue but I had a total glossectomy done to remove it. I had the same amount of radiation. I found I couldn't eat from the end of week 5. I didn't use fentanyl though, I was on pregablin (from the gabapentin family) and rinsed my mouth out with warm water to help ease the pain. It wasn't too bad, just the ulcers were painful

I didn't feel much pain during my treatment, not sure what the doctors used. Hope you have good PET result

I was prescribed Lyrica also for the pain

Also a medicine called Doxepin, which is a powder-filled capsule pill that you pull apart, dissolve the power in water, swish it for a minute and spit. It was helpful.

I was prescribed hydromorphone and lyrica. Took a while to get the dosage right but eventually effective.