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Posts (192)

1 day ago · Erosive oral lichen planus in Autoimmune Diseases

@maryz You have been having a hard time! It seems that thrush (candida) and OLP go hand in hand. Very painful.

2 days ago · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

@karenjf I haven't had proton therapy but "ordinary" radiotherapy for SCC of the mouth. I think the side effects would be similar. The effects are ghastly with internal and external "burning" and difficulty eating. I just think you need to take the appropriate pain meds. They are not addictive if you need them. They're not harmful for a short period and it's bad for you to be in pain. You need to take the meds regularly so you don't get break through pain.
I was told two weeks too but I started to feel better before that – maybe because my radiotherapy was more limited than some. It was maybe 10 days before I noticed an improvement and after a short while I could stop the meds. Everyone is different though!
Please talk to you team about your pain and how to manage it. Wishing you well!

Sat, Mar 30 8:04pm · Erosive oral lichen planus in Autoimmune Diseases

Interesting post, @maryz You are indeed lucky to have had oral medicine specialists in the cities you have lived in and you've taught me a new term, stomatology. I had OLP before my oral cancer and still have a mild form of it. Very interesting about the fingernails. Would you mind if I shared your post anonymously with an oral medicine specialist here in New Zealand. She is not my doctor but she and I are on the same co-design committee at the hospital. I'm still trying to make sense of OLP and would like to discuss it with her. Before my ulcerative OLP lesion was diagnosed as cancer some years ago, I lived in constant pain with that sore tongue.

Sun, Mar 10 8:42pm · Scar tissue in throat caused by radiation and chemo treatment in Head & Neck Cancer

Thrush is miserable when you have it in your throat. Here's hoping you get some relief soon.

Sun, Mar 10 8:40pm · Scar tissue in throat caused by radiation and chemo treatment in Head & Neck Cancer

This is an incredible story. I think radiotherapy is a lot more targeted these days.

Mon, Feb 11 6:26pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

@cpaulestep Cancer can be very much random. I had lichen planus, however, that over many years turned to cancer or maybe was cancer much earlier than was recognised. They do say that long term irritation (over decades) can cause it but as you say, you just want it gone. I wish you well in your search for further treatment.

Thu, Feb 7 4:37pm · Erosive oral lichen planus in Autoimmune Diseases

Hello@jshdma Here is a recommended oral medicine specialist in NY. My contact is a dedicated oral medicine specialist with both dental and medical quals. She recommends seeing such a person for OLP and BMS. You might already know all this! It's just that Kim, my contact here in NZ, is not the sort of person to wash her hands of people in distress so I tend to listen to what she says.( I don't see her as a patient but as consumer rep on a hospital committee.)

Wed, Jan 30 3:50pm · Erosive oral lichen planus in Autoimmune Diseases

@jshdma I have emailed my oral med specialist contact and she said she would seek out one of her contacts in the US for you if you could tell me what part of the world you reside in. She says these are difficult to treat but as I said, she is a very dogged specialist and there's a tiny little chance that something like this could help.