Base of Tongue Cancer - Recovery ?

hipwr1 Member Posts: 8 Member
edited March 2014 in Head and Neck Cancer #1
I was diagnosed with base of tongue cancer - stage IV - in May '07. I had radical neck dissection surgery and both tonsils and tonsil bed(s) removed and a small portion of the base of my tongue. I had 22 lymph nodes removed from the left side of my neck - none were cancerous. I am undergoing 33 radiation treatments - burning both sides of neck, throat, and base of tongue. I receive an Ethyol injection before every radiation and I am receiving Erbitux chemo once a week during radiation. I have 12 radiation left and 2 bottles of chemo. I have been using my feeding tube 100% for 2 weeks with Ensure and water, and I have been accenting the hydration with infusions thru my port. As long as I stay hydrated, I am doing fairly well, other than the mouth/throat issues. Dry mouth, no saliva, much phlegm/crap. Can not swallow water due to throat pain. Miracle Mouthwash is the best relief, so far.
Will the tastebuds come back? Will the salivary glands come back, due to the Ethyol? Has anyone experienced this treatment protocol?? Please advise what my "healing" process is going to be and how long??


  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    hipwr1: First, congratulations on survivorship and what sounds like a great attitude and treatment plan!

    I had a 15 hour surgery to replace half of my tongue (including base) with tissue and nerves from arm, and then like you went through 33 rad treatments, along with chemotherapy (in my case). I took the two shots each morning before rads, in the hopes of saving salivary glands, and managed to do so.

    I understand it doesn't always work, but I have saliva.

    On the other hand, the dry mouth has never really gone away and I am resigned to carrying a water bottle with me everywhere, everyday (no big deal: everybody does it in Europe because water prices are so high there :)).

    I have taste buds on the side of my tongue not replaced, and they work fine!

    I am also still using the peg tube for feeding, but not 100%. I can eat most everything, if I give myself the patience to do so, which, frankly, is my problem....a matter of patience.

    The phlegm is very much a problem early on. In my case, for the entirety of radiation, I was pretty much up every two hours to remove it from my throat area, as it felt as though I were being suffocated. This won't change immediately when rads are done, but DOES get better as time goes by. I now can sleep an entire evening, although I still find I need to gargle water and get rid of some of that at least two or three times a day.

    Stick with what you are doing hipwr1. In particular, stay hydrated! Stay hydrated! Stay hydrated!

    As for the burns due to rads, check with doc and see if he will okay a product call biafene (sp?). My wife is wound care nurse and she applied that to me BEFORE and AFTER the rads (or I did, as time went by). The trick is, it contains nothing that would harm you doing the rads. BUT CHECK WITH DOC FIRST! In my case, I avoided a lot of the burning that others get, and I attribute it to that.

    Take care and best wishes!
  • WillieP
    WillieP Member Posts: 6
    Dear hipwr1,

    Yes, your taste will eventually come back. I had radiation to my neck, tongue for 30 sessions and lost my taste. It came back about 5 weeks or so after last radiation treatment in 4/07. I remember I cried so much when it started to come back knowing that I can taste food again. I still have the dry mouth, this thing seems to recover slower like everyone else, it could be months like the doc said. Keep sipping the water to keep your mouth moist or chew the sugar free gum, it helps to produce saliva. I am currently on my next to the last round of chemo with some usual side effects, mouth sore... but still can taste food and being able to eat when the mouth sore gone, I am off ensure and start eating soupy solid food because I don't enjoy dry food any more becuz of mouth dry. Anyway, you'll get better. Take care.
  • susanmdunn
    susanmdunn Member Posts: 2
    Just goes to show we are all different. My husband finished his 33 rads and Erbitux in mid April 2007 and he is just starting to eat again - but only a few bites. What amazes me is the Ethyol. Never heard about this, and we did a lot of internet studies before Jeff had his treatment. I'm sorry we didn't ask about Ethyol before he went through the radiation!

    We have a good friend who is about 4 months ahead of Jeff in the treatment (same cancer - base of tongue) and our friend has his taste back and eats like a horse. I've seen him. So I think its very individual in terms of how people come out of the treatment and get back...

    Jeff just taught an all day class at San Francisco State U yesterday, and I didn't think he would be able to. But that is how much he is recovered since April.

    Keep spirits up. We watched funny movies for 2 months during the treatment and after. It helped A LOT!

  • Merma
    Merma Member Posts: 4
    Yes, your taste buds will come back (I had verysimilar surgery and radiation treatment), but it's up to your body when. I'm just 3 weeks off of 30 treatments and things like pasta still taste like dirt. Try to keep it simple with the Ensure, as well as yogurt, ice cream (if you can handle the cold), jello. Also, keep experimenting with your favourite foods. It will just take some time, so my advice is a lot of patience! Also, radiation is wicked on your teeth, so drink a lot of soda water if you can handle it. Are you doing flouride treatments for your teeth as well?