My sister has Stage 3 tongue cancer at the base of her tongue. She has had the tumor removed through surgery (along with some lymph nodes on one side of her neck) and finished 6 weeks of radiation treatment approx. 10 weeks ago. She has been unable to eat (relying on the PEG) since half-way through radiation mainly due to a very swollen tongue which doesn't seem to be subsiding. Can anybody give advice on whether this tongue swelling is normal after radiation and how long it may last. Are any treatments available?

Welcome to OCF, Aalan. Sorry to hear what your sister has gone thru. Everyone responds in their own unique way to procedures and medications. Swelling can take months to subside, especially with an invasive surgery like what your sister went thru. The only thing I can tell you is that in time she will get better and the swelling will go down. I dont know how long it will take or any tricks to help her. Im sure it must be quite uncomfortable. Nutrition that is high in protein can help with healing. Try adding some high protein whey powder to her formula to boost her protein intake. That may help make her recovery a little quicker.

Best wishes to your sister with her recovery.

Thanks for the words of encouragement. The harderst part for my sister seems to be that no-one can tell her how long it will last or of any possible treatment available. The tongue is so swollen that she cannot yet close her teeth together and therefore cannot chew or swallow properly. Understandably, the discomfort is making her quite depressed (especially as as there seems to be little sign of improvement since radiation finished over 2.5 months ago).

Sincere regards, Alan

Hi Alan,
I did not have radiation so will leave it to others to comment on your sisters issues with a swollen tongue.
I can however comment on your question regarding no one being able to give an estimate of how long this will last. This frustrated me also and I was often given the �how long is a piece of string� whenever I posed questions like yours.
Simple answer is everyone is different and I doubt if you will find anyone that can give you a timeline.
I also had a little swelling of the tongue/flap from surgery that did NOT prevent me from eating my pureed food earlier on. I did have a few de-bulking surgery�s for this mainly on the flap.
Is there someone on her team that you can talk to about her depression over this? She may need a little help with this.
Best wishes for her recovery and hope that it is a very short piece of string.
Gabriele

Thanks for the post Gabriele. The situation is indeed most frustrating but it is good to hear from those who have come out the other side. It seems we very much have two battles here: the physical effects of the cancer/surgery/radiation and the psychological effects of still not being able to eat (and the inconvenience of using the PEG) and just waiting for things to get better.
Sincere regards Alan

The neck dissection is contributing to the problem - the lymph fluid has lost part of its pathway therefore is stagnant and not really moving - kinda like a sewer backing up. Movement - a good long walk daily, and lymphatic massage learned through a professional will help build new pathways and allow the fluid to drain - this in turn will help with the tongue swelling. Also at this point her mouth is likely very sensitive. Some foods - acidic (sugary products, vinegars etc... ) and spicy foods will also cause swelling. hugs!!!

Thanks Cheryl for the helpful post and the hugs (we need them!). Will need to do a bit of research on this and perhaps follow it up with her doctors. Ciao Alan.

I am now 8 months post surgery and 6 months post chemo and radiation. After 20 professional manual lymphatic messages teamed with doing myself between treatments as well as after and the passage of time, my tongue is almost back to normal but still a bit of swelling to get rid of. As stared by others the combination of the surgery which "shocked" your tongue teamed with lymph nodes being removed leaving remaining nodes to "redirect" causes a head, neck and tongue swellong. It is also rather slower recovery than any of us would like. Although I am now battling a couple of remaining canker sores from the effects of radiation and dry mouth, it is so much better than even two months ago. Hang in there. It does get better.

I am also facing the same problem of tongue inflammation.
I have completed almost three and half months after radiation and chemo.Can any body say normal period this problem persists.
I find it difficult to brush with tooth paste also.

---------------------------------
KVSatyanarayana, 53 yr,non-smoker,non-alcoholic,worked in lead and zinc industry for 25 years, T2N1M0, found in oct-13. wide glossectomy and MND type -II ( 17/10/13)
,6000 cGY radiation for 30 days.with chemo(cis-platin)(31/12/2013)

Hi KVS,

Unfortunately, there is no universal answer to your question because we humans are so variable in our physical responses to major trauma.

I'm sure that I needn't remind you that you have just been through a MAJOR trauma.

When these things begin to get you down, shift your thoughts to how glad you are to be exchanging Carbon Dioxide with Oxygen, and that the grass remains in it's proper place; beneath your feet.

Best wishes to you and all who suffer similarly,

Bart

It can be a combination of factors, In addition to the lymphodemia. it can also be a fungal infection, like thrush or bacterial infection or combination, which can make the tongue swell. Some medications cause tongue, mouth swelling too, besides the cancer treatment. Other factors may also be inhibiting eating like mucocitis, ulcers, throat inflammation, and treating these with proper oral care, rinsing, avoiding spicy, acidic, hot, and sharp textured foods, antifungls, antibiotics, antivirals or ani-inflammatory agents, may improve eating, but see your doctor before self diagnosing.

As far as the toothbrush Satyanarayana asked about, some use soft baby toothbrushes, and theese brushes too can be cut down, use q-tips instead of a tooth brush, there are sponge brushes on sticks, usually yellow or green, that can be used, cut if needed, cotton gauze on fingers, and also the WaterPik on low setting can be used to cleanse the mouth, salt/baking soda, or saline solution added to resevior to rinse, but I returned mine, so maybe someone else has more experience how to use, and heard of a tongue scraper attachment, I think.

Good luck.