Thank you for supporting our channel. Best wishes.

We're really glad to hear it was helpful. We hope that our videos support SGC patients, carers, clinicians and researchers alike. Thanks for supporting our channel.

Thanks for your support.

Thanks for your support.

@@SGCancerUK are there any other stories of people who use the electrolarynx because of this cancer ????

Thanks for supporting our channel.

Hello, we hope you find support by being a part of our community. You're able to join our network on the SGC-UK website here: www.salivaryglandcancer.uk/get-involved/join-our-network/

You also might like to know that we are having our next gathering on Sat Oct 19th in London, UK and online. Our gatherings are attended by patients and their caregivers, as well as treating clinicians and those doing research into SGC's. It would be great to have you join us. Details are on the website www.salivaryglandcancer.uk/get-involved/our-events/.

@@SGCancerUK sure. That will be great. Will check the website and looking forward to virtually meeting everyone. Thank you for notifying me.

Thank you so much for sharing your experience

whats d symptoms?

I am super happy to read this.🤗 Because I was diagnosed with ACC almost ten years ago and luckily I have no reoccurrence as well. I hope to live as a cancer-free person for many long years.🤩

4:22 I, too, live north of Atlanta and am at Emory Winship for treatment. I search for all of this type of information

So glad to read the stories are helpful to you

My aunt has salivary gland cancer but I don't know which type - removed asap and fastly recognized. Year later metastases to lungs ---> chemotherapy + few radiation lights. Results and her feeling were good. Then... just 3 months later --- small netastases in the head... She had 2 weeks + 2 days of radiotheraphy in Febuary (except weekends). Then she felt soooo weak and had huge headaches and ... nobody knows how much these headaches came from cancer and how many from side effects after radiotherapy. Results from April after treatment --- it stopped and smaller dissapeared. But she's so stressed, so scared. She have some little lacks in memory, or not, rather she have to think slower then she used to? She doesn't want to read not to make her brain tired or not to strain it. We're all afraid. Only 2 months and now she needs help almost 24h/7. Like she can walk but she's really weak. She was in hospital amost the whole month between March and April now it's a little bit better but ... nobody knows what's gonna happen ... I live in neighbour country, so we havent see each other for a while. She's 69 with no other illnesses, among other health problems just "hypopigmentation". Generally healthy person, looks young as for her age, was always eating healthy and as she get retired she kept moving, going to sport, yoga etc. never had obesity etc. She's living not in city, in the village. I wanted to see some head metastases survivors but of this cancer it's so hard to find any videos

Thanks for watching!

I do too - I hope you are doing well.

@@Joel_Powell I had 35 radiations 5 years ago then brain surgery because of radiation damage. Please tell me how you are doing. I am here for you

@@Rockstar69000 I had surgery on my trachea (primary site) in Jan 2022 - I had radiation on my chest for about 3 months that year. Later in 2022 it showed metastasis in the lungs. I found a doctor fortunately in my area that was the lead on a study of a drug trial (Vorinostat). I met with him. My largest lesions before starting in my lungs were about 6-8mm. After taking Vorinostat for 18 or so months, my latest CTs only show very small areas < 3mm - almost too small to see. The oral chemo is tough on the body, but the results seem promising. My doctor has a patient that went this route (with much larger tumors) and she no longer has any sign of ACC. I feel great - I am 66 - I still work every day and stay active in many other ways. Thanks for checking in - it's hang in together!

Thanks for your comment @ameenacrafts2249. We've noted your request re more proton therapy specific information. We always like to know what our followers need/want so we can add it into our planning. We will make sure we address this.

Really glad that you found the video helpful. Thank you so much for supporting our channel - it's really appreciated.

As Lymphedema of the head and neck can contribute to difficulty swallowing, breathing, or moving the head and neck - when seeking dental treatment, it would be best to discuss any difficulties or preferences with your provider prior to appointments. Providers can then tailor their treatment journey, for example, more time for regular breaks, less water, more suction etc. In terms of keeping the mouth healthy when affected by Lymphedema - that is quite a big question and one that is quite tricky to answer on a post reply as it would very much depend on the patients' individual presentation and clinical needs. On a general level the recommendations would be: fluoride toothpaste with an electric tooth brush (if possible - or small manual), maybe non foaming toothpaste and lean over sink to avoid swallowing or use a suction brush. Use a very small brush like a single tufted brush to get to areas that are tricky to get to. Mouth wash at another time to brushing to keep tissues moist and fluoride levels high. Assuming that "numbing medicine" is local anaesthetic? If so, it is injected into the nerves and not the lymphatic system so should not be a problem but again, best to discuss with the provider as there maybe the potential for other issues to come into play here. We hope this helps.