New here…SSC in Jaw

Hi Lola. 
have a look in this thread 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/new-here-say-hello/294148/newbie

Lola said:

I am looking  to have electric stimulated acupuncture (?) to see if it helps. 

I had traditional acupuncture called Auricular acupuncture and it certainly helped me. 
There are a couple of entries in my blog linked at the bottom of this post. 
Do let us know how that works for you and tell us more about it 

Hi Lola and welcome. It's a very friendly community and I'm sure you will find answers and support here. I'm also new here on the forum, and I somehow relate to your situation, as my C also started around the wisdom tooth - maxillary area. The bone was clear, but I did have one lymph node affected. I'm due to start radiotherapy next week and I wander if you would like to share the extra things you did that helped with the side effects. I also wander what the effects of RT are in that particular area - the anterior of the mouth. Like pain in your teeth or anything else.

I'm also a woman, used to smoke for a few years but 20 years ago, good oral hygiene... 

Hello! Wish you healing! 

Can I ask what were your symptoms before diagnosis? How doctors found the tumor? For me I have weird painful sensations in my mouth, throat and face (jaw, ear) lasting for months, see an otolaryngologist and still have no diagnosis.

Hi Lola,

I have only recently been diagnosed with SCC oral cancer. Like yours mine started by an impacted wisdom tooth and has spread to the jaw bone but on the left lower side I am awaiting date on my surgery for mandiblectomy and they are hoping to use my fibula for reconstruction. I too have never smoked, drink moderately and visited my dentist ever six months. I think it must be something in my genes as this is my 3rd cancer diagnosis! You are obviously further ahead of me on this particular cancer journey. I know there are challenges ahead but I'm not wasting anytime worrying about the future but will take one day at a time.

Eliza Rose

Hi Lelay! So sorry to hear about your diagnosis! I would be happy to share what I did during radiation!

My holistic oncologist had me taking 60mg of melatonin every night during radiation. I was also doing Vit. C infusions up until a week before radiation started. You could also do high doses of oral vit c but you can not take it during treatment. I also did mistletoe injections before and during treatment… I still am but I need to get a refill! My holistic onc also wanted me to take betberine during treatment 2x a day before meals but I had a hard time doing that so I just did the melatonin. Both of those supplement are rradiosensitizers meaning they make cancer cells more sensitive to the radiation.

  My oncologist had me use a prescription cream called Mometasone Furoate once she saw I was getting red. I mixed it with equal amounts of vanicream 2x a day. Once an hour or two after treatment and another before bed. I used Miaderm cream all other times and used it A LOT! My skin is perfect and the doctors are amazed! 
Now that I have completed radiation, my Radiation Oncologist has me taking Berberine 2x a day. She also has me taking Vit E (400 mg) and a prescription called Pentoxiflline. She said she read studies where it helped with muscle fibers that radiation tries to tighten. She said it works… it just takes a few months before I will notice.

i am doing all that plus I see a lymphatic massage therapist. My Radiation oncologist said the quicker I start that after radiation treatment is completed the better so she put in a referral for that a few weeks before I was finished with treatment. I go 2x a week and it is so nice! I also see my speech pathologist every few weeks or so and keep uP with all the jaw stretching and swallowing exercises. It really helps!

I know I put a lot out there, but feel free to ask any other questions! I don’t know what I did to get my taste back so quickly and feeling in my tongue…but one or all of these things must have helped!

Lola. Can I ask whether you are in the USA? I recognise quite a few of those medications but they aren’t routine here in the U.K.  Pentoxifylline is used here in radiation fibrosis together with vitamin E. 

I am in the USA

Thank you!

So interesting! I am going to see an acupuncturists soon and will ask about this. I believe she did mention the ear when I initially spoke to her a while ago!