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FormerMember
FormerMember
  • 23 replies
  • 156 subscribers
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Hi I am knew here, was only diagnosed with 

  • Oropharyngeal cancer 3 weeks ago and to start my radiotherapy next Monday 11 October. Can anybody give me advice on what to expect please. 

  • Thank you
  • Hi and welcome to our little community. Sorry you’ve had to find us but you are in the right place for help and support. 
    We are all different and react differently but I can give you a broad description. The first two weeks are largely uneventful. From there your mouth and throat will get more sore. You might not be able to swallow much towards the end. Do you have a feeding tube placed? I had a nasogastric tube put in at the end of week three and had it in for nine weeks. Your neck skin will burn a little or a lot. You’ll get quite tired. Radiation effects peak 2/3 weeks after treatment ends. After that you will get slowly better but not straight away. By six weeks I was feeling out of the fog and by twelve I had turned a real corner. These two milestones are fairly common. 
    All these events are manageable so do let your radiographers know how you feel. They are your first port of call and will liaise with the rest if your team, my advice would be to not be brave and don’t Google. There is much alarming and inaccurate stuff there

    The places for advice and information  are your team and fellow sufferers here. 
    I have a blog linked below with some information 

    You could also look at marks bio here 

    https://community.macmillan.org.uk/members/markel


    You are in treatment remarkably quickly after diagnosis so that’s a bonus. 
    Best wishes and keep in touch as you progress

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi welcome to our community we’re all here to tell if we can. Dani has summed  it up perfectly. I am 3 years post treatment for tonsil cancer with several affected lymph nodes am now living life tk the max. Pop on as snd when 

    Hazel

    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/

  • FormerMember
    FormerMember in reply to Beesuit

    Thank you for replying with that, I'm new aswell + half way through my second week of radiotherapy, I was feeling very anxious about what was to come but after reading your reply I feel more at ease. X

  • Hi Holby. Any questions just ask one of us will always try and get back to you. Between us we can usually cover most things. 
    Hazel 

    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/

  • Hi There and Holby I finished treatment in January and just got a letter saying I dont have too see my nurse again which is great news. Just take one day at a time and think you will get through this. Believe it or not but loads of people are telling me I look really well lol . All the Best Regards Minmax

  • Hi Holby

    ( a favourite programme, how am I going to do without it? Wink)

    so pleased you feel a little better. It’s a pretty ghastly treatment but effective and taken a day at a time doable. 
    I’ll add loss of taste and thick sludgy mucous clogging up your mouth to the general symptoms. Again manageable. 
    Pop back when you need us and take care 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi I finished my radiotherapy 3 weeks ago. I agree with all of the effects that other people have talked about but would add that I felt sick and nauseous for most of the time. I also was hospitalised on two occasions for constant vomiting. Thankfully these symptoms have disappeared since I completed my treatment. I have also experienced some hair loss, not a lot but I have a bald strip at the base of my neck from ear to ear. Luckily I have fairly long hair so it's not noticible.

    The only advice I would give is that you take things day by day and you will get through. Good luck and take care of yourself. 

  • FormerMember
    FormerMember in reply to Beesuit

    Hi Dani

    Sorry for the delay in replying, I have had so much going on, not just with the cancer, I ripped one of my nails right off. Thank you for the information you have given me, I am so glad to have found this group. I will Definitely keep in touch

    Love Arlene

  • FormerMember
    FormerMember in reply to Cupcake59

    Hi There 

    Thank you for that information, I have already starting to loose my hair but that is down to all the medication that I am on. I also have Crohn’s Disease which I was only diagnosed with last year. 

  • You’re very welcome Arlene. Hope it all goes as well as it can for you. By the way have your doctors suggested there is any link between your crohns medications and the cancer? 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge