Radiotherapy and Rig fitting advice please

Hi Sue 

I had a PEG tube (similar to RIG) fitted prior to start of ChemoRadio....treatment caused loss of appetite and taste....mouth and throat ulceration....I found it impossible to eat after week 3....feeding tube probably saved my life....used it for about 4 months....

.Saying that some do miss the worst of the side effects.

Peter

Hi SueEssex 

I can help only with the RT

I had six weeks of radiotherapy for a base of tongue cancer 

By the end of week three the pain was so bad I couldn’t even swallow water. I had an NG tube placed and proper pain relief organised and it was a complete game changer. 
My tube was in place for eight weeks. 
Treatment was a challenge. It was hard sometimes and the two weeks after finishing were difficult, but I was well looked after and I made an uneventful recovery. 
I made sure I had enough nutrition and took my analgesics by the clock to stay in front of the pain 

For my neck I used aloe vera gel straight after RT as well as the moisturiser the hospital gave me. 

Ask any questions you like especially as problems arise. Somebody will have an answer. 
Good luck. 

Hi Sue. I had tonsil cancer with 7 affected  lymph nodes I had 2 of planned 3 chemotherapy and 35 radiotherapy’s. Best advise take medication's ss     needed I had ng tube fitted end of week 3 it was my lifesaver enabled me to make quick recovery. Trust your team. You’ve said tongue cancer is it front if tongue or base of tongue  that helps us tailor the correct responses. Mine was hpv 16 positive has that been mentioned. Blog below might help. 
Hazel 

Hi, I too had a PEG (which is similar to a RIG) and then chemoradio. The treatment is challenging so my best advice is to tell your team about every little symptom/issue/concern as soon as it starts. Don't suffer in silences as there may be easy fixes or at least something to ease whatever's going on. And accept all the pain management. I was lucky that I maintained swallowing throughout though did go down to soups/shakes (& Ensure drinks). But having a feeding tube is an important back up and as others will tell you, it's definitely been a life saver. Any concerns, pop on here and ask questions or search topics - I found loads of useful threads on here that were just so reassuring... Keep us posted on how you're doing. 

Lisa x 

Thanks Peter most helpful advice

Thanks Dani I may get back to you for further advice once I start my RT 

Hi Hazel mine is the side of my tongue which I’ve had two operations on and it still doesn’t feel right. Hopefully the RT will do the trick although since reading some horror stories I’m very afraid of the 6 weeks treatment 

Many thanks for your helpful reply Lisa it really helps to know I’m not alone on this journey. I’m already feeling more positive regarding the feeding tube although slightly daunting at first. I struggle to take pain killers anyway so hopefully the Rig may help with taking them x

Hi Sue just take everything one day at a time , inwas 61 when diagnosed if I can do it anyone can. Don’t look too far ahead and keep off dr goggle , any questions please ask us in here someone will always help. It’s hard but it’s doable . I’m 6 years post treatment now. Happily living my life. All my pain medication went via my tube when couldn't swallow . You will be given exercises to do , do them dally  I still,do them even now and I’ve never had any swallow issues. 

Hazel 

SueEssex said:

since reading some horror stories I’m very afraid of the 6 weeks treatment 

Sue. Don't be. I was 67 when my treatment started and I'm now over five years clear, discharged from routine review. The treatment is not easy but most of us here manage, day by day, to get through it. Your radiographers are your daily contact for whatever you need so tell them how you feel. There are drugs for most side effects. I was started on cocodomol which did little so when I had my NG I was given morphine which did the trick but I was told to report if I was waking in the night for a top up. When I did I was prescribed long lasting morphine which was an absolute revelation. I was practically pain free.

The morphine did give me nausea but not really enough to need anti sickness meds

Now back to the horror ....I counsel patients to avoid google and statistics but there is one useful one. There are nearly nine thousand new cases of oral cancer in the uk every year....and rising. Here we have just the tip of the iceberg on the forum and by its nature it is very self selecting. Some of us have a bit of a rough time but only some. A lot of the new members introduce themselves and are not seen again till they pop on to report that they are doing well and are NED.

So ....chin up. It's doable....just tough.