20 weeks post treatment. hpv16 30 rads....Scary ride the last couple of weeks.

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Hi all... been a bit quiet lately as of course we had a wonderful two weeks in Tenerife, Sunglasses and just before we went, he decided to try a gel called oral medic, to try to get rid of the one and only persistent little bugger of on ulcer on side of his tongue. BIG BIG mistake, it burnt him and made it worse, luckily its healed up now but beware what you put on ulcers. First scary moment as he was in agony and i was worried it may spoil his holiday. Second and it's still ongoing!! is a big crater sore on his left tonsil area, its where he had the tonsil removed so of course he went into Panick mode. It came up out of nowhere one day, literally overnight, not particularly sore, just when he eats, saw the dental surgeon as it was quicker, but he referred him straight over to Ent. Had to wait 4days which is not that bad, but he was scared, really scared that the cancer was back. Unfortunately, his normal consultant was away but he saw another guy from Colchester who i must say was lovely. He wasn't particularly concerned about it, didn't take a biopsy and said come back in a month. I suppose it's been there around (9/10 days now, looks most unpleasant, grey and yellow and quite deep in fact i think its deeper than when it started.  Anyone else had this?  It's because of where it is that worries him so much, the consultant tried to reassure him, and to watch and wait I think they are trying to see if it's just due to the radiotherapy as its only 20 weeks post. A month seems a long way away to see them again so I will be keeping an eye on it, taking photos etc.

Anyway, all in all his in good health, eating well, still prefers meals with gravies, sauces. wet stuff, although still eating his sweets and chocolates and occasionally crisps! Weight is going on quite quickly, He left off the propolis but has decided to take it again as he had no problems till, he stopped it. Worth the nasty taste and expense if it works.

I Hope everyone is thriving, and surviving what I know is an awful experience, life does get back to near normal quite quickly but with a few bumps in the road.Raised hands

  • its great to start feeling anyway normal again 

  • Hi Hope 

    Glad you managed your holiday away.

    Ulcers. Neat Gelclair is good as is corsodyl though that might sting a bit. 

    The tonsil lesion is a worry, I bet. At least you won’t have long to wait for the next appointment 

    Can you remind me, has your husband had his PET yet? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • No and he hasn't been told his getting one as nothing showed up the first time before surgery and treatment 

  • Sorry, you'll have to remind me...So your husband had all the surgery you mentioned in your first post and they didn't find the primary? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Hope try to remain calm . Even at 4 years post I’m one of the unlucky ones I csn still get ulcers even now when I I introduce  new foods. We’re over in Spain at min last week we did a 1400km side  trip yes mad I know. On our return Friday last week I noticed a ulcer on lower  front jaw. Put it down to eating in the go and a particular nice doughnut. So as Dani says  neat gelclair I always carry it with me. Now a week later it’s gone. I’m still taking the propolis been on it 5 month niw I won’t stop it as it helps my burning mouth syndrome. As for tonsil lesion my tonsil melted away during treatment along with my uvula so can’t compare there. As he had any scans since treatment finished ? Was he on the pathos trial ? I know a few on that who don’t get end if treatment scans otherwise it’s unusual. East to say try not to worry. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Neck dissection march, rad  finished june. primary thought to be left tonsil which they removed. This is where the crater ulcer is.

  • No, no trial just surgery then radiotherapy. It's weird as they removed tonsil, this is where the sore is. No scan post, and none ordered by  oncology. Going to ask why on the 23rd Nov.

  • Hi Hope yes I woujd as well I had mri  ct snd pet ct scans before then week 18 post I had pet xt scan. As I said sone in trials aren’t getting scans. It could well be radiotherapy treatment has we all know it’s pretty brutal, which it has to be to get rid of cancer. The side effects can creep up years later as well.everythjng x for you and hubby. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • So were you told the cancer was in that tonsil? 
    it’s strange that he’s had no scans at all. My trust used to rely on MRI  till they had regular access to PET in Cardiff. If he’s had a real belt of radiation to where the tonsil was maybe that’s just it which is why the oncologist left it to wait and see. 
    If it gets worse I’d be in touch again though 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • To be honest he wasn't told a lot but lead to believe primary was left tonsil. Sore is getting deeper so I'm ringing tomorrow. Doubt il have much luck as his got that appointment on the 23rd Nov.