Base of Tongue with spread to Lymph Nodes in Neck

Hello Everyone!

I thought I'd drop a note to say that I'm still alive and kicking.

It was a rough go but i came out the other side in good shape.

I'm eating pretty much everything although my taste buds have not returned to normal yet. I've read it can be three years to finally normalize if at all.

I've regained my lost weight and work out at the gym to rebuild muscle mass.

My CT scans have been clear so far and hopefully they stay that way.

I'm planning to winter in southern Texas and maybe get over to Arizona as well 

I hope everyone else is doing well.

Merry Christmas (I not sure whether it is proper to say that anymore). 

Anyhow, have a great festive season.

Cheers,

Danno56

Hi Dani Merry Christmas to you as well. Great to hear from you , yes we still continue to see improvements  I’m over 4 years now and I would say tiny improvements   Continue even now. good to hear your scans are clear just remember how far you’ve come. Have a fabulous time in Texasand Arizona if you get there. enjoy the warmth. Please keep in touch it’s always good for newcomers to see life continues. 
Hazel x

Great news Dan! I had my PET CT scan results this week and I too had the all clear - The best Christmas present ever!! We started our treatment around the same time I recall. Great news all round  then

Happy Christmas and a blessed new year to you.

Helen x

Hi, my husband was recently diagnosed with Cancer in his right tonsil and there is a tumour in his neck. His tonsils have been removed, and he has to have his wisdom tooth out before starting Chemo/Radiotherapy. Also has to have a PEG feeding tube fitted which he is digging his heels in about as really doesn't want it. I think it will be a life line as he already is thin and really could do without losing more weight, so next week he sees the Oncologist who I hope will convince him to have it. Could you please tell me about your personal experience of having a feeding tube. I think deep down he is very scared at the thought of not being able to eat.

Hi Bron. Chemo/radiation is a very aggressive treatment. Most of us end up after week four not being able to eat. I wasn't offered a PEG but was told that I would get a nasogastric tube when I couldn't swallow. I was told that if I lost too much weight I would be admitted to hospital to continue and finish my radiotherapy. It's not much of a choice really is it? Most people report that while having one put in isn't pleasant and it takes a few days to settle It saved their life, enabling them to keep their weight up and more importantly take their pain medication.

My nasogastric tube certainly saved mine. By week three I could hardly swallow 

Having said that some people do manage to swallow right the way through but even they will admit it is a real struggle

I'll quote another forum member who posted today that if you don't get enough food in your body stops working and treatment is bad enough as it is.

I had six weeks radiotherapy and I'm coming up to four years clear...so it's doable, just difficult.

Hi Bron has Dani has explained my and her n g tubes were lifesavers  literally. If your husband had been offered a peg my advise us a few days discomfort it’s worth it. Unless he has experienced being unable to sip as much as a teaspoon of water you can’t explain how much a ng tube or peg is a lifesaver. If you can’t eat or drink you can’t take pain medication. My trust didn’t routinely offer pegs but I had to consent prior to treatment starting that I would have a n g tube.  By end of week 3 I was begging for the dieticians to get me one fitted. 
our bodies take a huge battering in getting rid of our cancer we need nutrition snd hydration without it  treatment is harder than needs be. Plus I too was told I could t  loose too much weight or would be admitted. 
My blog below might help. 
Hope this helps. 
Hazel 

Hello Bron,  I was diagnosed with cancer of the left tonsil spread to some of the surrounding tissues last January . I had a PEG put in before treatment started, and needed to start using it within a few weeks as I could no longer swallow easily. The body needs to keep up its level of nutrition to recover and repair from the robust treatment it receives each day, and having a feeding tube takes away the worry of not being able to swallow enough calories.
It was also used for taking medications, some meds were in liquid form and pills were crushed in water and taken that way. It can be difficult getting used to the idea that you can’t eat, but usually it is only temporary and for a while eating can be viewed as just getting the calories that your body needs to recover.

There will be a lot going on to contend with and having a feeding tube just helps things along, if you want to ask any questions please do, I’ll answer if I can

best wishes

Laura 

BennyM said:

It can be difficult getting used to the idea that you can’t eat, but usually it is only temporary

Hi Bron  Laura is spot on. 
My tube was in for only 8 weeks. 

Hello. I had a PEG fitted prior to treatment. I used it from week 4 of treatment for hydration,  meds & food. At this point of treatment I had lost a stone & a half, could only manage a teaspoon or so of yoghurt & Fortisips made me vomit.  I linked up to a small pump overnight & was drip fed 2000-3000 calories each night. It was a lifesaver. It took the stress & upset of trying to eat away & ensured I was getting the calories necessary during & post treatment. I had it removed at 11 weeks post treatment. 
Am happy to answer any questions. 

Thank you for your helpful input. My husband has convinced himself that he won't need the PEG when I think it's the sensible option in having a good recovery. It's quite frustrating at the mo as he is being quite stubborn about it and thinks the Oncologist, well is hoping that she agrees with him when I know she will tell him he needs it.