Tiredness, 2 years since diagnosis

FormerMember
FormerMember
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it’s been 2 years since diagnosis of tonsil and base of tongue cancer resulting in a tonsillectomy, a big chunk of the base of my tongue removed and a neck dissection followed by 33 rounds of radio and 3 of chemo , and I’ve been doing well having my peg removed 3 months after treatment and getting . back to work last January after  9 months off. Recently  I’ve been feeling exhausted, to the point I feel poorly. I’m eating ok as long as I have lots of gravy or a tin of chopped tomatoes with a meal! but have lost 7-8kg since my peg was removed, sleep isn’t great as I’m forever waking up with a dry mouth and I’m post menopausal after treatment which I think has affected my sleep. 

Can anyone let me know if this extreme tiredness is normal almost 2 years out of treatment. 

any advice would be amazing and stop me worrying!! 
thanks

ali

  • Hi Ali

    Radiotherapy can have ongoing sequelae that pop up unexpectedly. 
    Have you had your thyroid checked recently though I might expect you to have gained weight with a sluggish thyroid but it’s not always the case? That’s the first thing that springs to mind. 

    I would bring forward your next onc check up just to put your mind at rest as well. 
    Hopefully it’s nothing that can’t be easily fixed. 

    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

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  • Hi Iam 18 moth post radiotherapy for tonsil cancer aanI know of two others who weee  in treatment with me at the same  time who have recently been diagnosed with under active thyroid ,both of them haven’t gained weigh one stayed the sameness the other has lost at least 5 kg.Like Beesuut says the radio an and does have long lasting side effects some which don’t show straight away lSo see your consultant or your g p .I had my thyroid checked in May and will have it checked every year luckily at the moment I am ok with thyroid .

    fe your dry mouth have you tried Xyimelts quite a few of us here use them especially at night time for dry mouths.I can now get 8 hours sleep just popping 1/2 of  one in my cheek a try nighttime. They are available on amazon .org from the mouth ulcer company online .I also have had 6 acupuncture sessions for dry mouth and do think it made a difference to my saliva ,so much that I can eat a packet of plain crisps without drinking water .

    Hope this helps 

    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/

  • Hi

    I am literally at 2 years post radiotherapy and have been experiencing really bad fatigue for the last few weeks to the point where I daren't sit and watch TV as I just keep falling asleep !!. I'm very active so not lack of exercise. I don't sleep well but haven't for years so can't attribute it to that. Iv'e had my thyroid checked once but I'm having another blood test on Tuesday. 

    It feels very similar to what I experienced during radiotherapy.

    You know what they say about radiotherapy, it's the treatment which just keeps on giving!!

    I'll be interested to know how you get on.

    Wendy