New to here and cancer......

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Hi All

I have recently been diagnosed with SCC primary on the base of my tongue and in my neck.  Having a PEG fitted next Wednesday, and will soon start 6 weeks of radiotherapy and 2 parts chemo.  Not sure what is coming, I would be interested on any shared relevant experiences.................

Alex B

  • Hi Alex. Welcome to our little club. 
    Have a look at Hazels blog. Click on her name and there is a link on her profile  

    Mark has a good diary if you click on his name  

    And if you look at the bottom of my post there is a link to my blog. I had base of tongue cancer four years ago. I avoided chemo though. 
    Best wishes 

    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
  • BOT cancer is largely HPV+ve and has an excellent prognosis. Oh and leave Google alone 

    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 Alex. Have a read ig our blogs. We are all different but they are honest accounts 

    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/

  • Hello. I’m 1 year post treatment for tonsil & lymph mode hpv 16 positive. I had a PEG & 6 weeks chemoradiation. 6 x chemo & 30 x radio. Feel free to ask anything. 

  • Hi Blod, I'm in for 6 weeks radio& 2 sessions of chemo, but I dont know how many days that is, or if its pill/drip.  How was it for you, did you lose weight/hair during this part of the treatment?

    Did you have teeth extracted before?  Did they restore ok?

  • Thanks Beesuit, I will be having 6 weeks radio, and 2 sessions of chemo, how did it make you feel?  Did you lose weight, hair, teeth?

    How long after did you feel physically better?

    Did you get depressed?

    Alex 

  • The RT makes you lose a little hair at the nape of your neck and at the front where the beam hits. So if you have a beard you’ll lose a bit for a while. Cisplatin can make you  nauseous and affect your hearing but at the doses we get it leaves our hair alone 

    I was in a fair bit of pain with the mucositis ( mouth ulcers etc) but once I got pain treatment organised it was a case of head down and get on. 
    It’s a challenge no doubt but I did it at 67/68 and I’m good four years later 

    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
  • Hello. I had a dental check up but didn’t need anything doing I had bilateral tonsillectomy then PEG fitting then mask fitting then 6 weeks of treatment. Treatment was Monday - Friday for 6 weeks, travelling to & from the hospital each day. 
    Every Monday was chemo followed by radio, then Tues & Weds just radio, Thurs was radio then clinic with my oncologist then bloods taken  & Fri just radio. 
    Chemo was Cisplatin via a drip. 
    My hair thinned quite a lot with the chemo & radio left me with a bald crescent from ear to ear at the back of my head  It grew back ok, but with a bit of a curl 

    I lost about a stone & a half - but had deliberately gained half a stone prior to treatment 


    If you click on my name you can add me as a friend for direct messaging if you’d like. 

  • My husband is starting chemo Thurs for base of the tongue for nine weeks followed by seven weeks of radiotherapy so in same position, bit apprehensive