I am a 40 yr old non-smoker who was Dx'd with SCC on the left side of base of tongue in 8 of 2004. Had surgery to remove tumor in 9 of 2004. ENT unable to get clear margins w/o removing most of my tongue. Went ahead with 40 radiation treatments at maximum dose for my age and also 4 rounds of chemo. I am now seven months post treatment. Continue to experience tingling and numbness in my tongue (as well as pain), and stiffness in my neck and jaw. Eating is difficult but I am now able to eat okay - but still rely on ensure and other nutrition drinks to maintain weight. I also experience extreme dry mouth and acid reflux. My question is how long will it take for the residual effects of the radiation to go away? Thanks for your input.

Allyson

Hi Allyson,
and welcome to the site. What kind of radiation did you have and when did you complete treatment?

Most radiation side effects eventually go away but some like to linger such as muscle texturing from radiation damage. It took a long time for the blisters and radiation burns to heal, complicated by frequent bouts with thrush.

I am about 30 months (today in fact) post Tx right now and have relatively few issues from the treatment (or maybe I just don't remember what it was like before). I had IMRT and it took about 18 months for my salivary function to return. I never had a PEG so I had to eat by mouth all along. My swallowing is pretty normal. I don't have acid reflux.

The pain and stiffness is largely gone now.

Allyson,

There are several factors that can affect how much of your salivary function comes back: 1) whether any salivary glands were removed during surgery, 2) the type of radiation you received, 3) whether you were given anything during radiation to help reduce dry mouth problems, and 4) whether you are taking anything now to help boost your saliva (such as Salagen or Evoxac).

Because I had general field radiation (not IMRT) and lost some salivary glands during surgery, I had fairly significant dry mouth problems for a long time after my treatment ended. I've taken Salagen steadily for the past 15 years and regularly use Biotene products (such as the mouthwash and gel), and that combination has helped me get back somewhat closer to "normal", but I know it will never be what it was before treatment.

However, you'll find that different people here have had a variety of experiences with dry mouth -- some better, some worse. The important thing is to do whatever you can to deal with the dry mouth issue in the long term, as it can adversely affect your dental health, as well as impede eating, swallowing, and talking.

Cathy

Good Morning Gary and Cathy, Thanks so much for your replies. In response to Gary, I had IMRT and my treatment ended in Feb of 2005. I, too suffer from bouts of thrush every couple of weeks. Cathy, I have not tried any medication for the dry mouth, but am wondering how the salagen works. Someone told me the side effects are not worth taking it. What is your opinion on that.

On another note, I wish I would have discovered this website while I was undergoing treatment. It would have been great if my primary caregivers (my husband, sister and stepmom) could have utilized all of this useful information and support. I have spent the last couple of days on this website and have found so much useful information, and I am so grateful to have come across it. Thank you so much!!

Allyson,

I've never found the side effects of Salagen to be so problematic that I would stop taking it. If I do miss a dose, I notice the increased dryness in my mouth fairly quickly.

The side effect that I've heard cited most often is sweating. While it does happen sometimes, for me it's usually a rather quick episode -- and something that's more noticeable if the weather is hot anyway, or I'm in a hot room. I found early on that if I took it partway through a meal, rather than on an empty stomach, the sweating effects seemed to be lessened. I take 5mg tablets, 3 times a day.

Cathy

Hi Allyson,
your salivary glands should make somewhat of a recovery. It can take as much as 18 months - that is a big advantage of IMRT over XRT. I took no meds for that and I am about 85% of my normal salivary function. In the meantime, keep a water bottle handy and stay away from dry or salty foods.
I had pain yawning and moving my tongue around for a long time and that has significantly gone away now.

It takes a lot of patience for full recovery.

Allyson --

You might ask your ENT about Evoxac (a newer drug with same function as Salagen). Our ENT -- who had radiation theray herself for head and neck cancer a number of years ago, and was left with significant dry mouth problems -- says she finds it personally far superior to Salagen and is prescribing it for her patients with xerostomia.

Gail

Hi my mum is 41 and recently had a gruelling 14 hour operation to remove a tumour at the base of her tongue. More importantly she had a trachea fitted that caused no end of grief. Mum has had a peg fitted since the beginning of her operation. She has been home for a week and a half. Although she can swallow and eat soup! she may never eat solid food again. We are now about to embark on radiotherapy which is causing nightmares for us all. After a consultation today they said she will not be able to swallow for 12 weeks is this true !. What are the cruel harsh side effects of radiotherapy. Any one who has been through it would love some advice
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I took salagen for a couple weeks with no side effects. Then again, I have plenty of side effects from the Iressa that they plan to keep me on for the next two years. My salivary glands seemed to improve a bit on their own and most of the taste came back rapidly (the dietician told me the zinc tablets were good for that)

SR, my tumor was located on the surpaglottis, but after radiation and chemotherapy, I never lost my ability to swallow. I did, however, lose interest in eating solid food for about six months. Perhaps someone else will post that had treatment for a base of tongue tumor.

Good luck to you.

Jen

Allyson
I was 46 and tumor removed from base of my tongue I had 37 rounds of rad. and 4 chemo. I am now 4 1/2 years out. I still have some problems w/dry mouth. I do have reflux, but considering I am close to the 5 year mark w/no other problems I can deal w/the other things left behind. I also think that w/this like everything else everyone is a little different. I still have a problem w/ taste sweet is good for only a few bites then no taste and salt is very salty after a few bites. I started back eating pretty normal after about 4 months, which I think was good. I don't have any problems now with weight. I hope you all the best and being back close to normal very soon.