What can I do/not do after radiotherapy finished?

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Hello again

RT ended 7 weeks ago. All in all I don't seem to have suffered as much as I might have done. Lots of things are now improving, though occasional new things arise.

For a laugh, I am thrilled to bits with the improvement in the skin on my face and neck after two weeks of hideous scaly flakes that dropped off to reveal an improvement worth about £200 for a cosmetic face-peel treatment!

A silly question but I read that I must not colour my hair during RT treatment. Can I do it now? I use an over-the-counter product, wash in. No bleach or anything strong.

Not quite so silly, but I managed to keep my weight up with tons of Fortisips (now eating a lot better though not perfect) but I started the treatment needing to lose about two stones (I'd still be well above my ideal weight). I've struggled with weight gain in the last 20 years (now age 72) and it causes pain in my hips, back, knees and feet and sweat rashes below my blossoming boobs. I could do without all this weight but I don't want to compromise my treatment. At what point can I start to address this? I forgot to ask at the last Team Meeting and don't have my next (and final one, I hope) for six weeks.

Not silly at all but I have worn a removable denture of the front three bottom teeth for about ten years. It is not the best option for most people but I have poor gums and declining bone, so I put up with it. It has been nice and snug but only just removeable for cleaning with a bit of effort. I took it out for all my treatment and after a couple of weeks I developed a very sore tongue and the denture made it very painful so I left it out completely. I am now afraid that it will not fit. I dare not push it in in case I can't get it out again. A new one will set me back not far off £1,000 but a dental nurse friend tells me the dentist might be able to "file it down" or similar. Has anyone any experience of this?

Sorry for all the questions in a single post but I thought it better than sending several.

Love to you all.

Meg xxx

  • Well done getting this far. 
    sorry can’t help with hair 

    I lost no weight in treatment but a little afterwards. I don’t think it compromised my recovery. I had no appetite for six months. Radiation fatigue can be pretty overwhelming so just be careful you don’t eat too little. 
    Re your dentures. You are entitled to free treatment including dentures at your hospital. The only thing is that you have to push for it. Insist on an appointment at your next review. Lay it on thick and say you can’t eat. 

    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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  • Thanks Dani. Didn't realise I could get dentures for free. I'm normally a private patient at the dentist. It is true that I can't chew properly cos I had two molars removed and now have a molar at the bottom with none at the top. With no front teeth I can't bite either.

    I don't have another appointment except to find out "the results" in 7 weeks.

    Meg

  • I don't have another appointment except to find out "the results" in 7 weeks.

    Meg

    Then give your CNS a ring and get her to fix an appointment with restorative dentist at the hospital. You may have to push for it but anybody who has had RT to head is entitled to free treatment 

    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 Meg has for hair I had mine highlighted around 4 months post treatment. Do a colour wash on I wouldn't think would cause any arm I hsvr mine highlighted every 3 months now snd no ill effects.
    I have a valplast denture my dentist did file mine down  around a year after treatment  she wouldn't do it any earlier as my mouth was still too  sore. Mine is a lower jaw one with 3 teeth on. But yes contact cns to get a dental hospital appointment lay it in thst you aren’t eating. 
    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 Meg

    I was referred to the Dental Hospital by my consultant and have had great service there. Before that I used to pay privately for the dentist but much too complicated for him to manage now. I paid a very affordable price for my upper dentures after having reconstruction on my upper jaw. I could not afford it privately as much too expensive. The team there are so experienced with head and neck cancers.

    Definitely get a referral.

    I also got a referral to a dietician to help with advice on eating and weight management. She was great. A dietician should be able to give you the info you need in relation to getting to your desired weight. I got a referral through the public system so I did not have to pay for the service. I was already in the public system and had the name of a dietician but a referral through your consultant should work. Maybe ring the receptionist at your consultant's office and it may even be able to be arranged via phone without an appointment with your consultant.

    Best wishes

    Lyn

    Sophie66

  • Hi Meg,

    I am 10 weeks out of treatment.  Seems like you have done really well.  As to weight... I can't answer your question directly but before treatment I did go out and enjoy eating everything that I may never have been able to eat again and put on some weight.  I maintained that weight during treatment but worked with my dietitians to ensure that I went back to my pre diagnosis weight gradually since treatment ended. My advice would be to contact your dietitian and discuss with them - it does not need to be at your next formal appointment.  Even at this stage calories are vital to the body restoring itself, but they should be able to help you plan a safe weight loss regime.

    Peter
    See my profile for more details of my convoluted journey
  • Yes you should get this done on the NHS as it’s related to treatment. I got this info from the dentist and my team.  I’m sorry you’re going through this. I persevered and never took my partials out and never had issues. In a few weeks your mouth may change and reduce swelling. But it sounds like you’ll need a new partial