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Head & neck cancer

A group for anyone affected by head and neck cancers, including in the mouth (oral cancer), throat , larynx (voice box), salivary glands, and middle ear, as well as sinus and nasopharyngeal cancer. Ask questions, share experiences and support each other.

Products we found useful and not so useful during RT and chemo to head/neck area.

No. of entries: 31 | Posted on 18 Jan 2014 01:39
  • Hi Nik...my husband started RT recently at Derriford hospital, Plymouth and so far they do not supply all the products recommended and our GP is in their words 'reluctants to interfere' whilst OH is still in treatment there..so I think the answer is..every hospital/GP's practise have their own ideas and approved products. We are seeing the team again tomorrow and as I'm not happy with the limited products we have so far been supplied I'm going to press for alternatives. I can give as an example..Derriford give Biotene & Difflam mouthwashes & not the better more expensive Caphosol..so far that it, I'm giving it another try Monday if not succesful I'm going to ask if they will approve its use and then I'll press for GP to prescribe it.

  • Hello Nik and Jilly.   Unfortunately not every hospital will supply some of these recommended products for head and neck cancer patients due to costs ... for example, Caphosol is rather expensive even though many patients have found it beneficial during / after radiotherapy.

    I had my RT at Manchester's The Christie ( a superb cancer hospital ) but all they offered was Oramorph and Difflam once the unpleasant side effects started. Sadly I didn't know about all these various products at the time so would recommend that you ask for them one way or another. They can be bought directly from the supplier, but very expensive ... so do ask for a prescription.

    Joycee x

    PS  Here is the link for Caphosol UK  ...

    http://live.caphosol.com/en/PAT/Home.aspx

  • I was treated at the cancer centre at the new Queen Elizabeth hospital in Birmingham, and they are excellent.   

    They gave me as much Caphosol as I wanted -- it really does help -- and also gelclair, which is very helpful except you're not supposed to eat or drink for an hour after using it.    For pain relief once the side effects became a problem, they gave me soluble co-codomol to take four times a day, fentanyl patches">Durogesic fentanyl patches, and Oramorph for when the breakthrough pain got too much.   Together, that certainly made the pain bearable.

    One thing I would certainly recommend, though I understand not all hospitals and health districts use it because of the cost, is PolyMem dressings.    I ended up with a radiation burn about 3 or 4 inches from top to bottom, running nearly all the way round my throat, and those were so soothing and easy to apply and adjust..

  • Hi 

    My husband is being treat at the Freeman Newcastle upon Tyne , he was given as much as he wanted of everything he needed ,Caphasol , several different saliva sprays, a spray that anesthetize  his throat ,lollys that anesthetised his mouth , biotex ,codiene, oramorph, MST . Our GP wouldnt prescribe Caphasol as it was not in the BNF , they also wouldnt prescribe the saliva sprays only by private prescription,however I challenged this and it was the computer that refused to issue a prescription so the GP wrote a prescription .

    So much for equality across the NHS , noone should be denied medications that will help ,maybe this is an area which Macmillan could address.

    Caphasol was not around six years ago the first time my husband was treat .

    Hope this is helpful .

    Julial 

    julia l 

  • Just thought I would add that I've recently read that Vaseline is not to used on lips during RT. Apparently there is evidence to show that Vaseline can transfer infection into the mouth. So best to be avoided. H used 100% aloe Vera lip balm which was relatively easy to get hold of online. X

    My darling husband passed away 12th July 2014.

    I am utterly broken.

  • Guys, any suggestions for dry mouth/lips? I am 6 months finished RT & dry mouth is killing me!! Especially when talking, so difficult. Ive tried bioxtra spray & gel and havent found it of any great use. Would appreciate to hear from anyone who has a "magic cure"! ha ha.

    Thanks x

     

  • Possibly not a "magic cure" and I'm still in the early stages of this but Biotene is working well for me....have you tried that? It was the first thing my team gave me.

    http://www.biotene.com/

    Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with chemo Jan/Feb 2014.

    http://mike-oldfield.blogspot.co.uk/

  • Hello Northernstar.   I really don't think that there is any ' magic cure ' for a dry mouth caused by radiotherapy, but you could try a spray called A S Saliva Orthana which can be ordered from Boots, Chemist Direct or on prescription from your GP. I find this quite a good product and I use it as well as Biotene gel, especially at night ... also being a spray, it's convenient to carry round with you.

    Sometimes your saliva glands can recover a little, so hang on in there as eventually you may find a bit of a difference ... oh, for dry lips buy a lip balm from Superdrug, etc. Take care and best wishes.

    http://www.aspharma.co.uk/

    Joycee x