My Head and Neck Cancer Experience - so far

Wekcome Mick. 

MadEnglishmanLittleGuitarBigC said:

Forgive me I don’t yet know how the forum works but am happy to take direct messages or open chats.

I’ve always felt open chats are best as we all benefit. 
Of course some people might wish to talk about personal issues, swap contacts or just find open forum uncomfortable which is why we have PMs. 
By the way, it would be really useful if you could put a potted history in your profile. 

nice.. I like the episodes that I watched.. the cracker challenge was so 'welcome to my world' that I had to laugh.. fortunately I had PBM at Leicester, and I believe that it really made a difference, especially when I hear of the problems others have had with ulcers and blisters, etc.. TBH, fatigue, lack of saliva and a touch of lymphoedema are my biggest concerns..oh, and orange juice is so unbearably tart, other than that my sense of taste is and was unaffected...  so hopefully PBM will be made more available in the future.. 

Hi Dani

Feels like a bit of 'show me yours I'll show you mine'  My diagnosis was: 

P16 Positive Poorly Differentiated Squamous Cell Carcinoma Oropharynx T2 N3 M0 Lesion in base of tongue, a bulky right lingual tonsil with an apparent lesion and enlarged right level II nodes.

which to my lay mind looks pretty similar. I'm enjoying your blog which could have served as the script for my vlogs, the first few of which were done retrospectively. I found myself saying out loud "I wish I'd known this stuff at the time" which is exactly what people have said to me about mine!

I haven't tackled the profile yet as the there didn't seem to be a category to describe '15 months post-treatment end, hanging on in there'. I'll get on to it - thanks for the tip and thanks for the blog link

Mick

Hi Loz

Thanks, the cracker challenge is, to coin a phrase, a cracker. We recently held a Macmillan Fundraiser and had six people doing the challenge. One covered themself in glory, the rest covered themselves in biscuit crumbs!

My diagnosis was P16 Positive Poorly Differentiated Squamous Cell Carcinoma Oropharynx T2 N3 M0 Lesion in base of tongue, a bulky right lingual tonsil with an apparent lesion and enlarged right level II nodes which sounds pretty similar. 

How far out are you from treatment? 

I too had PBM at Northampton and I think that that, along with the fact that a lot of time in the sun gave me skin like leather probably protected me from the worst external blistering. I got the start of a blister about 2 weeks after the treatment end but nothing came of it. I too saw some people with quite bad blistering.

I’ve had all of your list of concerns. It was my dietitian who suggested that my mucus problem may be linked to Lymphoedema so I went on to Google and instantly became a leading world authority (as you do) on Manual Lymphatic Drainage. Seriously that helped me a lot - episode 6 of the Vlog covers that and it did me the world of good. 15 months in and fruit and sweet stuff still tastes salty but savoury taste has at least lost the horrible metallic taste.

Finally - my speech therapist suggested Salivax dry mouth pastilles and they’re the best I’ve found to date:

 https://www.amazon.co.uk/dp/B004K1P60Y?ref=nb_sb_ss_w_as-reorder_k0_1_19&amp=&crid=1JAFE7W1O6H9H&sprefix=dry%2Bmouth%2Bpastilles&th=1

Mick

Hi Mick I watched your podcast on lymphodema and found it really good. Ordered myself a vibrating ball. Plus your podcast on toothpaste was interesting about the SLS free toothpaste. I use the oralie at lunchtime and duraphat am and pm it has sls in it. I get water blisters every day post two or three weeks RT and I'm 16 weeks now and still getting them. They are awfully painful every day. Don know what to do to help them. I know it's early days. Wonder is it the duraphat but I need to use it because if the extra fluoride. Going a walk now and will listen to more if your podcasts.

MadEnglishmanLittleGuitarBigC said:

Feels like a bit of 'show me yours I'll show you mine'

Putting your details in your bio is really helpful for others replying. Especially if they are late to a thread or you have posted somewhere in another. I have to be particularly careful that any replies I make are pertinent. 
Putting a bio on saves folk looking through your past posts. I wish everyone would do this 
There are quite a few people here who have had a long and convoluted journey here. 
I love your Vlog. I wish we could pin your post but MacMillan don’t seem to do that. 
Nevertheless I shall bookmark it so I can signpost people to it in the future. 

Jg123 said:

Wonder is it the duraphat but I need to use it because if the extra fluoride.

No you don’t. Not for a while anyway. Get a varnish at the dentist and use an SLS mint free toothpaste 

Hi Jackie

I've tried to find the article on SLS from the States where it talked in detail about it leading to cankers (mouth ulcers). This article summarises some of that - it doesn't mention the drying of the mouth directly but it does cover the thickening mucus which leads to that. Hopefully it will paste here:

I've sent it in Messenger too in case you can't read this.

BW

Mick

Hi Mick, I finished treatment Feb 23.. used Flamigel RT religiously 3 times a day and Aveeno moisturiser overnight, had a helluva tan bit skin remained perfectly intact, never peeled or anything.

I have an Adams collar and do basic massage, which seems to keep things intact as far as lymphoedema is concerned.

as far as dry mouth goes, I just drink plenty and chew gum a lot.. 

Thank you Mick will read now.