Scan and Results

Hi Sue. Welcome to the community. Friday is only a couple of days away for the scan but I’d still get on to your husband’s CNS to tune his pain relief. The hospital should be able to check he hasn’t got thrush on top of all this which is very common in post RT patients especially after a course of antibiotics

I can see why he is down. To go through such a violent treatment with a possibility that it hasn’t worked in his mind is soul destroying 

Fingers crossed the scan is clear 

Hi Sue Welcome from me as well. Our treatment is brutal and recover6 can be long we’re all told a few weeks and thjngs start ti get better that’s the  exception. I’m 3.5 years into this treatment and there’s very few that get away lightly. I did suffer from oral thrush quite. A few times  even though my oral hygiene was good. It could be worth looking into near in mind if it’s oral thrush he needs flucozonole not nystatin prescribing if it’s radiotherapy oral thrush. The scan will be praying in his mind it’s a big thing to face. I waited 17 weeks for mine then a further 10 days for results. Try to remain positive it’s extremely rare h p v cancers don’t respond to treatment. 
As for the final chemo I only had 2 out if a planned 3 so yes it’s common the radiotherapy is the main course of treatment chemo is a top up. My oncologist reckons 66% of his patients don’t complete the full course of chemo and his results are excellent on final scans. 

We’re here if yiu need to vent and wish yiu all the best for forthcoming results on the 6t th. Please come back to us with results.

Hazel x

Thanks for your reply Dani. He is doing better with the pain now. He’s taking soluble co-codamol mostly and is managing to drink the meal replacement shakes.

I think it’s just with it all being such a big step backwards as he perceives it, as he been eating some food but now back full time on the shakes, is making him worry about the results.

Im just trying hard to be positive for him. As you say Friday is only two days away. It’s the wait then…

Sue x

Hi Hazel,

Thanks for your reply. It really is a brutal treatment!

We did speak to his cns about the possibility of thrush but we think this is an oral mucositis which is really painful. It is getting better now though thankfully. His oral hygiene is good but we had been away and I personally wonder if the swimming pool might not have been the best idea?

The scan is definitely on his mind and mine! He just is hoping it goes ahead this week!

I will come back with the results and it’s really good to be welcomed and able to vent on here!

Sue

Hi Sue do you have gelclair prescribed ? You. Can dilute it snd it puts a thin coat on the mouth and tongue lining. To be honest I’ve been away at least 10 times since treatment and haven’t been in a swimming pool yet. The thought I’d chlorine in my mouth freaks me out ! Even in the sea I swim with head up haven’t snorkelled since before treatment. 
Hazel 

Hi Hazel, he did have gelclair prescribed by the hospital when he came out but hasn’t had it since. It may be a good idea to ask GP for some.

He uses the 300mg aspirin dissolved to rinse and also benzydamine mouthwash together with Duraphat toothpaste.

Good tip about the swimming pool and sea.

Thanks Sue x

Sue. Duraphat is nasty stuff on sensitive mucosa. Maybe try Oranurse toothpaste ( Amazon) 

It has no mint or SLS. It’s what I use and have a three monthly fluoride varnish instead. 

Hi Sue agree with Dani duraphat is harsh on freshly radiated mouths I always  have Ora nurse toothpaste in abs to be honest use that more often than duraphat now. I too have fluoride varnish every 3 month since using Ora nurse. As for  mouthwash i only use bioxtra it’s gentle on mouth and p h neutral. I fi get that on prescription ftom g p. I got my oncologist ti write to then re mouthwash and gelclair as the finance people at surgery said no. We do have to be pro active at times. 
Hazel 

Thank you for the advise, I have ordered some Ora nurse and also bioxtra mouthwash for him to try and he has requested Gel Claire from GP. We haven’t heard yet if they are prescribing it.

Hehas finally had his scan now 19 weeks after the end of treatment Results next Friday

Sue x

Good luck for the results. 
I had mine at 16. The longer you wait the better the chances you won’t get a false positive. 
They still do them at 12 weeks in a lot of places  but many oncologists prefer 16