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Posts (206)

Fri, Jan 10 2:31pm · Inconclusive MRIs: Abnormality in pineal gland in Head & Neck Cancer

The agony of waiting! I know it well. It's hard the first time. First of all there is good reason to believe there is no cancer, secondly, you can use this time to treat and spoil yourself. It it is cancer you will have some treatments which might not be nice so try to do things you really love over this time. Another thing is to avail yourself of a counsellor. They are used to dealing with people going through this sort of stress. You aren't alone. There are thousands of cancer patients out there going through the same thing and many of them online, all of them knowing that uncertainty and being in limbo is a major cause of stress. We are with you.

Dec 20, 2019 · Hearing loss after radiation treatment for head and neck cancer in Head & Neck Cancer

I don't think you will lose all hearing Ross but I do have one friend who needs hearing aids after radiation without chemo. Time to talk to your team about it. And you are badly burnt by the rads. I remember my burnt skin rubbing off about two weeks after I finished treatment. Good luck to you.

Dec 11, 2019 · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

@rossfee,Yes! It's usually from chemo (Cisplatin) isn't it, but radiation near the ear can cause it too from what I can see. We have a problem in New Zealand where our medical care is free but hearing aids aren't funded even if hearing loss is caused by treatment.

Dec 10, 2019 · Dry mouth: Any ideas on how to help? in Ear, Nose & Throat (ENT)

The Oral 7 products are good for Sjogrens patients I believe. The gel is sticky but has a long lasting effect and the mouthwash in a little spray bottle is useful to have by the bed. It has enzymes to try to mimic real saliva. In my head and neck cancer community we have asked them to sponsor our new charity because a lot of our people find the products useful. The company is based in Australia, the products are made in the UK and are now available in the US.
I agree with the comment above on Xylimelts. They are good, as are all xylitol products, but it can be deadly to dogs.

Dec 9, 2019 · Tongue Cancer: Concern that no radiation offered after surgery in Head & Neck Cancer

@loli's advice is good @canziea. We don't all need radiation after tongue surgery but your mother should not be in pain and losing weight. She needs a treatment or follow up plan at the very least. If you live too far away to go to the hospital with her, could you ring someone to see what is going on? Sorry I am so late replying. I lost my password of all things. I wish you and your mother well.

Nov 23, 2019 · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

This is very impressive, @kkelly1023. I know a number of people with this rare form of HNC and yes some are doing very well after the initial round of treatment. Others are struggling and have had a multitude of treatments. I'm not a religious person but I live in hope and gratitude to be alive and reasonably functional! I would love to see better treatment pathways for ACC because it's a hard cancer to nip in the bud permanently.

Nov 19, 2019 · squamous cell in throat in Head & Neck Cancer

The removal of a tumour should have removed the HPV virus (?) but I think you should have a good discussion with your doctor about any further treatment. Sounds as if you have been very lucky to have caught the cancer early! Carcinoma in situ?
I wouldn't trust the immune system to deal with any lingering disease because cancer evades the normal defences of the body. Not sure about the HPV issue. Hope your doctor think you have had enough treatment!

Nov 10, 2019 · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Thanks for thinking of us, Colleen. I'm still heavily involved in head and neck cancer support in New Zealand. In fact my Facebook group admins and I are in the process of forming a charitable trust to run alongside the group to help people cover some of the overwhelming little expenses involved in getting to treatments: petrol, taxis, Uber etc. Work in progress. I'm still battling with the consequences of treatment, mainly in the dental area. Dry mouth and eating difficulties are my specialities.