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Medications, Treatment, Procedures
Yesterday at 02:58 PM
I believe it depends on how much radiation (how many grays) you are getting. For example, when my husband got his first treatment, it was 70 grays given over 35 days, so it’s 2 grays each day. Then when he needed some more radiation later, he was given 20 grays over 5 days, that’s 4 grays a day. I asked the RO and that’s what he told me. The second dose would actually be stronger.

I’m not saying you will have a lot of side effects, I just think it’s good for you to know.
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General Board
Yesterday at 01:44 PM
I understand there is a $2,000 charge from Dana Farber for this.
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Introduce yourself
01-13-2021 11:43 AM
Relate to you 100 percent. I was diagnosed with cancer of tongue yesterday and had a ct scan and getting a pet scan on Thursday then back to dr next Tuesday for results. Praying like you that it had not gone anywhere else. Surgery end of next week. My prayers🙏
9 1,472 Read More
Introduce yourself
01-13-2021 09:00 AM
I'm so sorry that you had to go through this. And at 19.

I was 25 when I was diagnosed with SCC. I tracked down and connected here with others who were also young when they were diagnosed. For many of them who made it through the acute phase as unscathed as possible, they were lucky enough to return to their normal lives and simply go on. At some point, for many of them, and if I'm being honest for me, they stopped waiting for the other shoe to drop. I know that it's scary and it feels like you will have to be on high alert to watch for things in your mouth for the rest of your life. And of course when we do notice something, it may send us spiraling back, which is why I'm here replying to an older post at 2:00 AM, but, there is some sense of almost normalcy that can return if you let it. Being vigilant is one thing and of course it's important for us, but, don't let the worry that it'll be back stop you from living. Until this week, it had been many months since I'd thought about this. I know that seems like a strange thing to say, but it is also true. Some don't have that luxury perhaps. But others do. You are still young. If you don't let it completely hinder and consume your life, you may be lucky and never have to look back at this again.
2 517 Read More
Introduce yourself
01-13-2021 08:23 AM
Hello everyone,

I was a member of this board 6 years ago when I was diagnosed with oral tongue cancer for the first time at the age of 25 - (32 now) squamous cell carcinoma, no risk factors and hpv negative. I thought I had updated since then but I guess I never did. I may have reached out to people individually as I was lucky enough to connect with some truly amazing people on this forum, many of whom helped me in so many ways. I've always been grateful for and to the individuals in this community and don't think I would have been able to maneuver some of the early days without its amazing support.

So, for that exact reason, and because it's 1:30 AM and I feel helpless waiting around for the world to wake up so I can deal with this, I find myself here venting to people who may understand, feeling perhaps truly panicked for one of the first times since 2014. I've had some other concerns before, obviously, as I'm sure many have when something new and unknown appears, but this one... this new spot on my tongue seems different. It seems a little more malicious. I know better than to assume anything before a doctor can see me but in the meantime, I'm finding myself back here feeling all different levels of deja vu praying that I am worrying for nothing. To top it off, for some reason the fact that my doctor left the University Hospital and sent us all letters just last month has me even more panicked. I love his team, I am grateful that the hospital has an amazing staff... but this is one of those moments I wish I could ask the doctor who operated on me last time. The worry center of my brain has clearly won at this point because it's saying, you made it 5 years, you're in year 6... remission... just in time for your doctor to leave and this spot to appear...

I realize I may sound ridiculous. But I feel slightly calmer now that I've written the words out. Thanks for letting me vent.

0 54 Read More
Introduce yourself
01-12-2021 06:55 PM
SCARED! 2 years ago had sore on tip of tongue turned out to be severe dysplasia and had operation to cut it out .Fast forward about two years later and two more biopsys negative developed sore on right side of tongue aching for about 6 months and ENT did another biopsy and next day called me to come in. I knew not good and now cancer he told me today!Had ct scan this am and pet scan on Thursday. Back to dr next week for results and scheduled surgery 3 days later .Very scared and praying it did not travel.I am 69. Never smoked and drink occasionally
Any input would greatly be appreciated!
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Long-Term physical and QOL Issues related to treatment
01-11-2021 10:57 PM
Sadly, my husband passed about a year ago. The aspiration issues, weight loss, etc from treatment became too much.
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Oral Cancer Recurrence
01-05-2021 08:07 PM
I have a similar situation. Surgery Nov 10, partial glossectomy, clean margins, no lymph node involvement but with perineural invasion. I am debating the radiation treatment, especially since it seems likely to come back. The whole situation is hard to comprehend and get used to in my life. I guess I had better. UCSF is a good place to be. A second opinion is always good. MY second ENT is the one who did the biopsy and diagnosis after I spent 5 months with an ENT who prescribed various drugs for the sore on my tongue and never did a biopsy. I wish the best for you. Thank you for sharing your experience.
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Introduce yourself
01-05-2021 07:34 PM
I'm not sure how to do this. I was diagnosed with squamous cell carcinoma on my tongue Oct 23, had partial glossectomy and neck dissection Nov. 10th. Margins were clear, no lymph node involvement, .8mm cancer (I don't know what you call it). My risk factor, and why my surgeon recommends radiation, is peri-neural invasion on a small nerve. Radiation has it's own risk factors and I haven't been able to make a decision about it.
Has anyone had radiation and still had a recurrence? Has anyone not had radiation and not had a recurrence? Any experience with this sort of scenario would be helpful.
Thank you for you time and caring.
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Long-Term physical and QOL Issues related to treatment
01-04-2021 11:10 PM
My husband was prescribed anti-anxiety medication. He took it until he felt he didn’t need it and he stopped. Recovery is as hard as undergoing treatment, that I believe. You might want to explore that with your doctor.

Unfortunately, John passed from pneumonia brought on by silent aspiration. It’s a very long story. He actually found an interventional radiologist who opened his esophagus using earth magnets. It was a trial procedure and to my knowledge, so few doctors know about it that John remains the only patient on whom this was done. I know because the doctor called me about a year back to ask me for permission to publish a paper about the procedure.

With the new year, I would like to wish you better luck, health and smoother sailing.
3 379 Read More
Long-Term physical and QOL Issues related to treatment
01-04-2021 02:51 PM
Yes I take 3200 milligrams of gabapentin daily but it does not help much, I also take 15 mill of hydrocodon that still does not keep the pain away. I have met with many doctors and no one seems to be able to find an answer. Thanks for sharing your issue, best of luck.
2 202 Read More
Oral Cancer Recurrence
01-03-2021 12:48 AM
Hi all!

Another update! Met with the doctor again at the beginning of December. Still nothing concerning. Have another CT scheduled for April 2021. Dad's had to stay home during the pandemic, but we've all managed to stay safe and healthy. I hope everyone is doing well.

Dad's glad he gets to wear his mask everywhere. He struggles with his appearance some days. But, otherwise, we're feeling blessed!
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Medications, Treatment, Procedures
01-02-2021 12:47 PM
I use ACT, not a gel but a tablet which works for hours.
6 1,346 Read More
Introduce yourself
12-30-2020 06:08 PM
I used a Jobst Epstein facial compression garment for lymphedema in my neck after completing my treatment. It worked well for me in conjunction with manual lymphatic massages. I still have the garment, but have not needed to use it for awhile. Now I use the massages to maintain my neck. Good luck!
3 347 Read More
Symptoms and Diagnosis
12-25-2020 01:05 PM
Good dental work. My husband did the same but still ended up needing a root canal.
Are you using Prevident toothpaste? Also watch that dry
Oral cancer is brutal in its side effects.
3 424 Read More
General Board
12-25-2020 08:07 AM
Merry Christmas and wishing everyone healthy and safe and happy 2021
2 207 Read More
Symptoms and Diagnosis
12-21-2020 12:32 PM
Glad to hear you have stayed on top of it. Happy Holidays SSL!
7 1,370 Read More
After Treatment Issues - immediate post treatment
12-21-2020 12:28 PM
Hi Nona Chris

Nice to hear all went well with your neck dissection. I am almost nine months out and my neck and shoulder are much stronger but tight. I find myself stretching it daily and massaging it by hand which helps.

Happy Holidays. We are blessed to have this forum and more time with loved ones. Stay safe and keep the faith.

1 450 Read More
Long-Term physical and QOL Issues related to treatment
12-21-2020 07:24 AM
A lot of this is sounding familiar to me at 7 years out. What became of all this? Thanks in advance
1 560 Read More
Symptoms and Diagnosis
12-20-2020 01:26 AM
The ultrasound was negative. However, I’m worried there is something deeper it was missed. How can it be that I have a bump in my mouth and my neck on the same side and they are not related?
7 887 Read More
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