Rare Tongue Cancer

Hi just got the news, I have a very rare tumour at the very back of my tongue that's not operable due to its location. I'm waiting on MRI and PET Scan appointments. Radiotherapy and maybe chemotherapy has been mentioned. Has anyone this rare tongue cancer......

  • Hi Sue, here's the link. Any issues with seeing it let me know (hope I can post links in a message). 
    www.christie.nhs.uk/.../speech-and-language-therapy-exercise-videos

    I was advised to do the exercises five times each, five time a day. Another exercise I was verbally told by physio was to forefully say the word 'hawk' five times, concentrating on the k sound on the back of your tongue.

    Well done getting through treatment, it be must be frustrating trying to get used to the recovery period. I hope you are able to see some better mobility soon. 
    Erica

  • Hello, hope everyone is doing okay. 

    Peter how did today go for you. Hope it wasnt too long of a day.  Getting fitted for the Mask isnt the nicest.

    Thank you Ericia for the video clip. I must try and practice more.

    I am on week 4. I have maintained my weight this week. the nurses and dietitian are wondering what's my secret.

    My voice is hoarse this week. I was given a prescription for a mouthwash incase I need it.

    Best of luck Peter in the coming days. 

    Mary.

  • Hi Mary,

    Good to hear from you and well done on maintaining your weight, it's not easy when your appetite fades and eating is the last thing you want to do, but as we know nutrition is essential if we are to keep our strength up for this tough treatment, so well done again.

    I was informed today that I was not accepted for the immunotherapy trial due possibly to my lung cancer, so I'm a bit disappointed as it was going to be another tool in treating the cancer, however I'm sure the current course of chemoradiotherapy will do the business!

    The face mask fitting was not nice but bearable, what I was surprised about was the number of people in the waiting lounge having the same procedure done, there was one young lad in his late 20's, three other men ages with me and several older men all with various throat cancers and that was only the mornings intake and here was me thinking throat cancers were not that common!

    My RIG feeding tube gets fitted on Monday, so I'm a bit anxious about the procedure but I'm told I will definitely need it week 6-7 and post treatment, plus the 10 hour chemo infusion on day one of my treatment next week fills me with dread, it's a long time to sit in one place, fortunately I have lots of music on my MP3 player and some good books.

    Thank you Erica for the speech link, it was very informative and with my cancer being back of the tongue I'm sure I'll need help with this in the months to come.

    I do hope your hoarse voice is not too bad Mary and that week 5 goes well for you.

    Best wishes

    Peter

     

     

     

  • Hi Peter, the mask is one box you can tick already, now you know what to expect 'on the table' hopefully it won't be so unknown. On my last day I asked to jump on it! The nurses thought it was hilarious but I crushed that bloody thing flat :-)

    I didn't have one but I have read lots of people describing their tubes as life savers. If you don't need to think so much about what you can find to eat or the discomfort of swallowing maybe you'll be able to tolerate the treatment better.
    I'm five days post treatment and I wouldn't say I feel worse than last week, about the same. Just for info. 
    Keep going, thinking of you. 
    Erica

  • Hi Everyone,

    My taughts go out too you Peter and to your family. I agreed what Erica said, the Mask is one ticked off the list and to acknowledge that Peter. The littlest of things can be a major achievement.  I hate every minute of the mask, I get a sedative and will for the rest of the treatment. I say to myself it's another day I wont have to wear the f....thing again. Very tried today....I seem to flop when it comes to the weekend.  Well done Erica, 5 days post treatment, I cant wait until I get there, fingers crossed.  Whats is next for you Erica?   Is it waiting for a few weeks then a Pet Scan? I'm Starting week FIVE on Monday thank God. I really appreciate this chat we have here. Takecare Everyone xxx Mary.

  • Hi Everyone,

    Hope all is going reasonably well, Erica you must be 10 days post treatment which is a goal Mary and I can't wait to reach. You must be counting the days to your PET scan, your positive attitude is something I hope to achieve in the coming weeks.

    Thank you for your kind words Mary, sorry to hear about the sedative with the face mask Mary, it must be a very daunting experience for you plus the fatigue as well, I'm certainly not looking forward to that, but you've not got long to go now, please be strong.

    I had my RIG tube fitted on Monday which for some reason was without sedation, I did have a local one injected into my tummy but it was still a tough experience, it was also my first ever overnight stay in hospital which due to a sudden rush of COVID patients was full and overflowing, I had to share the ENT ward meant for four with 6 other men with various serious ailments, so sleeping was impossible due all the coming and going. I've another overnight stay on Monday so they can monitor my first 8 hour chemo infusion, did you both have chemo and if so how did it go?

    After much asking I finally got my cancer staging, it is squamous cell carcinoma HP16, T4aN2cM0, I was originally diagnosed the 8th August so by the time treatment starts it will be three months which I think to be honest is longer that it should be but I suppose COVID has messed everything up!

    I popped into the Maggies centre at my hospital and they were very nice and helpful, they have a head and neck cancer group which meets every month so I'm going to visit them at the next meeting.

    Be strong and take care, we will beat this!

    Best wishes.

    Peter

  • Hi Everyone, sorry I havent been in contact. I had difficulty logging in the last week. Peter I hope all went ok on Monday. Have you started using the RIG.  I finished my chemo treatment today I had it once a week for 4 hours. The nurse today told me I did very well but expect a bumpy road yet as I could temporarily loose my talk. With this news, I'm going to do what I have done from the start and take it day by day. It's the only way to get through this journey. No one person is the same. . Food is like sawdust some days with no taste but I carry on.  I have Speech therapy once a week and have to practise excerises that she gives me. I must say it has made me laugh now and then especially when u see the dog looking and listening too me. I would have been a great witch over halloween practising my ee ee ee. .  Chat again soon

  • Hi Everyone,

    All went ok on Monday thanks Mary, I'm glad this process has at last now started, I shared the ward with a young man also with throat cancer and we both had our first of the three overnight hospital stays for chemo infusions, which due to all the blood tests and hydration went on through the night so sleep was impossible.

    Post Chemo wasn't too bad, although all the different drugs they are now giving me must be helping, went back to hospital for more hydration today and again tomorrow which will also be my 4th day of Radiotherapy which has made me quite fatigued already.

    Still swallowing foods ok albeit painfully, but food has started to become tasteless and bland.

    Not using the RIG yet but I seem to be having some issues with it already, the district nurse is coming round on Friday to check it out.

    Pleased your speech therapy is going well Mary and I can just visualise your dog looking bemused at you when you do your exercises which must be very confusing for your poor dog!

    My hearing seems to have got worse and I have trouble listening to the TV unless it's turned up loud, hopefully that will soon pass!

    Week one nearly done, six more to go!

    Still trying to be positive and strong but still having a few wobbles especially during the night but I'm finding the sleeping tablets helping a bit.

    My best wishes.

    Peter

     

     

     

     

     

     

  • Well done Peter, you will be tired so make sure you rest.  I found it very difficult to do at first as I was very much an outdoors person. Great to hear from you and best of luck for the coming days. 

    Erica how are you doing?

    Chat soon, Mary

  • Thank you Mary for your kind words, I'm an outdoor person as well and have had a few small walks in the Autumn sunshine, but I'm just amazed how quickly the fatigue comes on after a little exercise and this in just over one week of treatment !

    The other symptom the doctors did not mentioned is the chronic indigestion, no amount of anti-acid tablets or Gaviscon helps and sleeping can be very broken, which as you can imagine just adds to my tiredness.

    The district nurses came round today and showed me how to use the RIG when the time comes which they say will be soon, not looking forward to it as it seems to be a bit of a rigmarole to use however needs must.

    Hope all is well with you, one day at a time like you say is my mantra to see the coming days through.

    Best wishes.

    Peter