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Posts (215)

Mon, Jun 29 4:47am · 90 year old mom to have teeth removed - 6 years post oral cancer in Head & Neck Cancer

@hilsy What a dilemma for your mother. Sounds as if the teeth have to come out if a whole team agrees. There's a risk of necrosis of the jaw after tooth extraction from the radiated field, depending on how much radiation that part of the jaw received and HBO is used to improve blood flow and healing. However, dentists are not so certain now that it is useful. It sounds like a quite pleasant experience for people with normal cognitive function but there's pressure on the ears and its every day for weeks so as you say it might be too much for her with dementia. You could ask them about Pentaclo which is a drug combination used to improve healing after the bone starts to play up. Trental and Vitamin E. What treatment will give your mother maximum comfort? Good luck with these difficult decisions.

Thu, Jun 25 5:11pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Hello @jano At what stage of the process are you? I was last treated in 2014 and I'm pushing on with the usual side effects/ongoing problems. I'm seeing the oncology dentist in Auckland today about my biting issues. I have only a few teeth left, wear a dental plate and mouth guard but I am biting on the "flap" over my left lower gum. It's not much fun but I keep well and I'm glad to be alive.

Sun, Jun 21 11:09pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Hello @joemae1 You need more information from your medical team but I can reassure you that base of tongue cancer that has spread to a lymph node in your neck is quite common and usually successfully treated with chemo and radiation. It's a tough treatment but people recover well. You usually need a feeding tube into the stomach because swallowing is painful during treatment and for a few weeks after it but that will come out after a while and people get very used to it. The good news is that people treated now are getting more targeted radiotherapy and don't seem to suffer the same long term effects as those treated a decade or so ago. I have lots of head and neck cancer friends and they seem to come through this sort of cancer treatment without too many side effects although eating is often a wee bit harder because of radiation scarring.
You are doing just what I always do: looking at the worst case scenario. Do ask your nurse of doctor what the outcome is likely to be for you! You are in good hands.

Sun, Jun 21 4:30pm · Soft Food Suggestions in Head & Neck Cancer

Hello, @msherfinski. Early days for you as you learn to eat again. I'm sure your dietitian or doctor would not have "allowed" you to have the tube removed if there was any serious barrier to your swallowing. I did not have a peg but have heard many people talk about the trouble they've had getting back to normal swallowing. Ice cream worked for me when I was having treatment. Wishing you well.

Tue, Mar 3 7:08pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Sorry to hear this @ezg. There is good treatment for tongue cancers. I have a reconstructed tongue made from tissue in my forearm and I'm okay. Hope you can tell us more.

Fri, Feb 21 12:16pm · Scar tissue in throat caused by radiation and chemo treatment in Head & Neck Cancer

@maryemma Did you have radiotherapy? I'm afraid these problems are common in head and neck cancer survivors. Bread is difficult because it is too starchy and forms a sticky ball in the mouth. Some people lose their sensitivity to acidic foods and their dry mouth as times goes on. Sour cream can mitigate the acidity in some acidic foods. Wishing you good progress.

Sun, Feb 2 5:27pm · Throat lump in Ear, Nose & Throat (ENT)

@mayogirl7 It is good the lump hasn't grown but I agree that you should ask to be referred to an ENT. It's probably harmless but a neck lump should always be investigated.

Thu, Jan 23 12:19pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Hello @grizz20, I do not know anyone and had to look this cancer up.
However, I do know that radiation is often considered a good way of mopping
up any stray cells after successful surgery. On the scalp, the radiotherapy
should not be too bad, compared to those of us who experience its effects
in the mouth.

It sounds to me as if your sister is fortunate that the cancer was found in
an early stage and could be removed.

It's hard for people with rare diseases to find peers. There might be a
rare diseases group here but as far as having surgery and radiation to the
head and neck go, we are you group! I wish your sister well.