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Tonsil cancer radiotherapy

11 Aug 2019 19:12 in response to ShaunW

Hi Shaun

like markbsats everyone's lymph lumps are different some days mine was soft some days hard some days both. What the lymph nodes do is kind a waste disposal system catching the dead cancer cells and holding on to them. Likewise lymohidema doesn’t start until radiotherapy gets well on way sleep well tonight hold head high in morning. Today had lunch with 2 guys n wife’s whi went through treatment a year ago n niw we are well enough to eat out and laugh about our radiotherapy sessions  a year ago we were all in your boat wondering all the negative thoughts hazel 

 

Tonsil cancer radiotherapy

29 Aug 2019 09:49 in response to ShaunW

Hi Shaun , Sorry for not writing sooner , lifes been a little hectic since hubbys diagnoses !.... anyway here whats been, happened & gone! "BRIEFLY"!! "could never tell you everything on here ! ... Hubby was diagnosed with stage 4 right sided tonsil cancer which had spread to the soft pallet & lymph nodes on both sides of his neck ... think that looks a bit like this : T4-N2-M0. .. Treatment was initailly 6 back teeth out , followed by peg tube being fitted prior to treatment "if your advised to have a peg ..please do so!".. it really is a life saver !! .. ok onto the chemo ... Hubby had to be admitted for his treatment  as he had 5 consecutive days with a two week gap followed by 5 more consecutive days ... bit harsh but hey he was still smiling through it all ... prior to radiotherapy he was admitted for one overnight chemo then as soon as it ended he was sent straight into the radiotherapy unit to get his first session done , from there on he attended radiotherapy daily for 30 days , two weeks before the end of the radiotherapy he had another chemo which was also overnight in the hospital ... he started getting pain 4 weeks into radiotherapy & swallowing became impossible by the end of the radio , unfortunetly he did get pnuemonia twice after the treatment had finished , this was due to him aspirating his feed from the peg as he just couldnt tolerate it being done overnight when he slept .. we tried propping him up & slowing the dose ! but it still happened ... we had to adjust everything & ended up bolus feeding the small fresubane bottles into his peg ... he lost 4 stone in weight  ... but hey nobody said it was gonna be easy !  ...its a hard journey & theres no hiding that fact!!.. things do go wrong & youll be tested to your limit!!...but its  so worth it when they tell you that your looking good & theres been a COMPLETE RESPONSE TO TREATMENT!!! :)))... so dig deep  ... you got this sh#t!! ...  take anything your offered Shaun ....theres no badges for being a hero when this guy comes to town!! ... keep strong .. cant say be positive cos I hated that saying lol ... last thing you feel deep down is positive!! ..but try !!! ...you got this!! .. sending lots of Cwtches!..."hugs! "

Tonsil cancer radiotherapy

29 Aug 2019 11:55 in response to Cariad

Also you can discuss with your Oncolgist which type of feeding tube will suit you best (for those newly diagnosed), PEG or RIG.

 

I had a RIG and it was fine, easy to use. This is put in direct throught your stomach not down your nose/throat.

Tonsil cancer radiotherapy

29 Aug 2019 22:56 in response to Hilts911

Hi Cariad, thank you so much for taking the time to reply. It sounds like you’ve both been through so much but you have come out the other side and things now on the mend. Tomorrow marks half way through treatment for me and lets say no surprises so far Happy mouth is already pretty sore but my oncologist is not shy with the pain control. No feeding tube yet so we’ll see how it goes. I’m certainly no hero and will take what’s offered to get through this. 

Tonsil cancer radiotherapy

4 Sep 2019 14:58 in response to ShaunW

So glad your coping well so far Shaun , Yes its been a tough one & still a few hurdles to go but fingers crossed! itll all be ok soon ! .. sorry I couldnt reply earlier as we have bought a motorhome 6 weeks ago & have decided to just travel & enjoy ourselves so internets a bit naff on my phone ! ...we're home for today &  we're off  down to Amroth in the morning , got a nice little pitch besides the beach waiting for us !.. definitely enjoying the R&R after all this last year has thrown at us! ...sending you our best wishes !.. take care ! .. 

Tonsil cancer radiotherapy

4 Sep 2019 23:25 in response to ShaunW

Hi ShaunW,

Hope your staying strong, I know it’s not easy, I'm in my 11th day recovery as I had it in the base of my tougne & in both lymth nodes so I had a PEG fitted then 4 all dayers of chemo & 6 weeks of radiotherapy. Believe it or not I have had more pain sense the end of my treatment that I did going through it & the one saying that is getting me through it is ‘it doesn’t last forever’. Good luck lovely & you got this x

Tonsil cancer radiotherapy

5 Sep 2019 00:04 in response to ShaunW

Hi ShaunW,

Yes, you shouldn't be in any pain. Oncologist should ensure adequte medication for you to remain pain free. A bit sore in certain areas perhaps but not real pain.

Good that you don't need a feeding tube yet, a good sign. If you need one they'll sort it. 

My only problems since being given the all clear is lack of saliva and the eating/swallowing only progressing slowly. i think that will come back eventually as I can see progress however frustratingly glacial, but might be stuck with Dry Mouth long term. Suppose chewing sugar free gum and carrying a small bottle of water around is a small price to pay for being alive!

Tonsil cancer radiotherapy

6 Sep 2019 16:09 in response to Hilts911

Thanks again to you all for your words of encouragement. I’ve just finished week 4 of 6 and started to loose a bit of control with the pain. My oncologist and his team have been amazing, it’s just these bloody mouth ulcers really kicked off this week. Plan is to review again on Monday and up the strength of my patches. I have worked hard with eating and have even put on a pound through it all. Another poster on here recommended Huel and it really has been a lifesaver. For some reason it doesn’t aggravate my mouth the same as regular food. I just make it with full fat milk and cream, giving a nice high calorie smoothie.

Hi Hilts, yeah dry mouth a big problem. My water bottle goes absolutely everywhere with me; I couldn’t survive for more than a few minutes without it. If we can get through this with just a dry mouth then yes its a small price to pay

Hi 6G, phew four full days of chemo sounds really tough. It must have taken a lot out of you. I’ve only had one so far and i hated it; worse than the pain in some ways.

Cariad you get out in that motorhome and enjoy every minute We have a static caravan by the coast at Formby. I love it there and dream about getting out there to recuperate.

take care all. 

Shaun

Tonsil cancer radiotherapy

6 Sep 2019 19:37 in response to ShaunW

Hi Shaun this is Hazel aka radioactiveraz I am now 1 year post radiotherapy for tonsil cancer h p v 16. Yes I still have dry mouth but am having acupuncture and it seems to be working my mouth now feel s moist. A tip I use xyimelts at night time just half one one and I get a good sleep now every night. Order online the mouth ulcer company. Too early for u while in treatment but worth trying. Water follow s  me everywhere I still can’t drink tap water only bottled .

i too had a mouth ulcer full length of my tongue from week 3 to about week 8 of post radiotherapy I was prescribed gelclair it’s good . 

I got to Spain week 8 post treatment it was sheer grit and determination like u with static it’s good to have goals . Have updated my blog last week give it a look if u want my perspective on it.

Keep in touch. Good luck hazel

www.radioactiveraz.wordpress.com 

Tonsil cancer radiotherapy

21 Sep 2019 07:56 in response to RadioactiveRaz

Hi all, just finished my treatment yesterday and have dveloped an awful mucous plug at back if my throat. Mouthwashes and humidifier don’t help and its driving me insane. Was in full blown panoc last night as felt i could not breathe. Any recommendations on what will help to loosen the mucous.

 

thanks,

shaun

Tonsil cancer radiotherapy

21 Sep 2019 19:08 in response to ShaunW

Hi Shaun have the hospital,given yiou a nebuliser ? That’s about the onky thing that I found worked in the early days , what it is it’s your body’s system teactingbtomthe harshntrratment amen creatung more mucus tomrry and protect ut m are yiu abke ti drink water ? If simsoda water is good as the bubbles helomto break the mucus or try Luke warm water or Luke warm tea  green de caff I’d poss  or any herbal tea ?

its the joys of recovery , plus I was using a box of tissues a day in the early weeks.

other than that well done on completing treatment now the hard work begins ! Drink. Drink drink water is a good motto as it does help tomyhin the mucus 

Hazel

Tonsil cancer radiotherapy

22 Sep 2019 09:46 in response to ShaunW

Hi Shaun 

I remember having the same as you describe at about week 5 of treatment , it felt like I was being strangled !! The nebuliser really helped me to clear it as Hazel mentioned , for me this lasted about a week when at its worst . Good luck going forward .

Peter-S

 

 

 

Tonsil cancer radiotherapy

22 Sep 2019 13:19 in response to Peter-S

Thanks Peter and Hazel, will ask hospital when i visit tomorrow or maybe just go and buy one!. Did either of you use Carbocisteine. Its a drug and I read it somewhere that it loosens the mucous.

also what did you put in the nebuliser? Just water, saline, or spmething else? They have one in local argos so  might just go and buy that one. Dont think i can stand ankther night without one...

thanks

Shaun

Tonsil cancer radiotherapy

22 Sep 2019 17:27 in response to ShaunW

Hi Shaun , I was given saline with the nebuliser which worked well 

Tonsil cancer radiotherapy

22 Sep 2019 18:34 in response to Peter-S

Hi

Husband is 3 weeks post radiotherapy for T2N1M0 tonsil cancer spread to lymph node (tonsillectomy and 6 weeks radiotherapy). He has done well really but is struggling with extremely painful back of tongue which makes anything other than soup, yoghurt, ice cream and 8 Fortisips a day very difficult to get down. He did have a RIG but it fell out 2 weeks post treatment and as he had only used it once, the dietician was happy for it to stay out. He is getting frustrated that the painful tongue isnt improving. No pain relief seems to help, nor does Gelclair or Oxetacaine before meals.  He has only lost 1kg since start of treatment, but is getting mightily fed up with Fortisips!  Has anybody experienced this and how long might it be before there is an improvement?   Soluble Asprin gargles dont help either.  Any advice welcome. The lump in the lymph node has shrunk dramatically, does this continue. Hes due PET scan early December.