Welcome to the Cancer Chat community Mich although I'm sorry to hear your husband has been diagnosed with tongue cancer.

I know you're looking for advice on your husband's treatment so I just wanted to put in touch with two members who have also contended with tongue cancer; [@Ginpo]‍ and [@shelly56]‍. Hopefully they won't mind me mentioning them in my post but I feel they may will be able to offer you and your husband a lot of information and guidance so fingers crossed they'll pop by when they can to tell you more about their experiences.

If you'd like to talk things through with someone then our lovely team of cancer nurses are just a phone call away on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m and they will do all they can to answer your questions and put your mind at ease.

Best wishes to you both, and good luck to your husband for next week. I hope his treatment goes well and he doesn't experience too many side effects.

Kind regards,

Steph, Cancer Chat Moderator

Hi, I had cancer in my Left Tonsil and base of tongue with one lymph node, Diagnosed 23rd December 2020, I started my Radiotherapy 5 days a week and 1 day a week chemotherapy Treatment in January 2021 for 6 weeks, last day of threatment on the 26th February 2021, after the treatment and my 3 month PETScan I was told I am clear of cancer, Its now been 6 months .......... what information can I share with you from my own experience ?

regards 

Dave

Hi Mitch I am now 3 years postbtreatment for tonsil cancer h p v positive and several affected lymph nodes. I had 35 radiotherapy sessions and 2 big doses of  chemotherapy cisplatiin. It’s not easy no use saying it is but  if I could do it at 61 anyine can Any questions just ask. I have a blog www.radioactiveraz.wordpress.com where you can see my  my experience .I a,niw living my life back to normal I can’t do spicy food but that seems just me I know many who can.

good luck Hazel 

Hi Hazel,

              Your blog and posts helped me through my Treatments, I thank you,  but I found there are gaps in all the forums which I read, so I will try to help others like yourself going through the diagnosis and treatments then recovery.

Best regards

Dave

Hi Dave

Thanks for replying and my apologies for the delay in replying to you.  

Hubbie has now done 2 sessions of chemotherapy and 9 RT.  At the moment all is good, skin is good, not red or sore, mouth is starting to get a little dry but he's keeping on top of that. 

I am looking for any advice  ie what to expect from the treament, so I can help him get through this. 

I believe 2 weeks after the RT stops is very bad. 

Thanks M x

Hi M, sorry for delay in answering your reply I have returned to work, and it is now 10 months clear after finishing treatment, I hope everything is going well for your husband, if he is suffering from mouth thrush, don't wate money on coconut oils etc they don't work, just good mouth hygiene and patients and it wil go away, I found a good none perfumed moisturizer worked instead of Vaseline on lips and surrounding skin, at this point I can eat anything I like, sometimes getting burning tongue from vinegar based sauces but not enough to stop me eating them, but I like mustard and chilly sauce so was used hot burning sensation anyway, but I suggest always drinking water or squash when eating to stop throat drying out, saliva has returned, but not enough when eating dryer foods like sandwiches ( I always drink water) .....

I hope this helps, please ask more questions if you need anymore support.

Kind regards

Dave

Hi Dave,

I have simular HPV+ right side tonsil base odf tongue T2 N1 start treatment Easter Mon sae as yours

I was contacted yesterday about a PEG tube which I'm not shall about having at the moment.

How did you cope with eating, working, side effects etc?

bircy999

Hello,

I'm sorry to read to need to start treatment, although you've likely been told repeatedly that it's very curable. 
I've gone through treatment for the same diagnosis as you - HPV base of tongue spread to lymph nodes. I'm now five months post. 
Everyone copes differently, especially as everyone has different levels of symptoms.  I didn't get symptoms for the first few weeks and then I just started counting down the days. One tip I had was to always know what your next meal will be, if you're tired and sore you don't want to have go for a shop. Keep lots of creamy soup, milk, smoothie ingredients, custard, porridge etc around.  Really ice cold water has a kind of numbing effect. Take (the correct) meds before you need them, why be sore when don't need to be. Sleep a lot. Take hugs and cups of tea where you can get them!

Best wishes for an easy ride, it'll be quicker than you think xx

Hi Erica,

thank you for your reply and so glad you are on the road to recovery. Did you have a peg tube fitted before treatment or was this not offered to you?

birchy999x

I didn't no, but I'm part of a thread called 'Rare Tongue Cancer' and Peter just had his removed after treatment. It's a really friendly thread, and I know Peter would answer any questions.

www.cancerresearchuk.org/.../rare-tongue-cancer