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#201940 07-10-2023 01:46 PM
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I realize my story isn’t as bad as others, but perhaps I have a lower threshold for suffering. In any case I’m quickly losing hope that things will get better anytime soon.

I was diagnosed with SCC of the left retromolar trigone in October of 2022. The malignancy was surgically removed 11/1/2022. I began radiation on 12/19/2022 and had my 30th and final radiation treatment on 1/31/2023.

Not long after the end of radiation I developed trismus, closely followed by loss of taste and low to no production of saliva. I’m surviving on three Ensures plus ice cream daily.

Pain near the site of my surgery turned out to be exposed bone. Today, I completed the 17th of my first 20 two-hour hyperbaric treatments. Friday, the day after session #20, the area will be debrided by an oral surgeon. A week from today, I’ll have the first of my final 10 two-hour hyperbaric treatments.

I see no end in sight. Any thoughts?


Donald F Amerman Jr
Manateedon #201941 07-10-2023 03:45 PM
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Hi Don,
Don’t give up, post radiation healing takes some time. Back in 2010 I was on a liquid diet for 6 months or more. I was surviving on Carnation instant breakfast, a lot of instant breakfast!

The closest I can get to the oral pain is a bad dry socket from an extraction, back when I was a heavy smoker, couldn’t wait an hour or so...lit that and lost the clot. This will all pass. This summer heat doesn’t really help.

I know it’s tough, look for something you can chuckle about through all this, can you still smell food? Revel in it, my mouth would water, if it could.

I had my tongue removed a year ago, I just pulled some chicken off the grill, picked up a piece to put in the blender, here’s the funny part....reflexively, and for the 1st time in a year, I went to lick my fingers...my wife and I laughed out loud about it, all I did was get grease on my lips!

My point is, this will all pass, look for the light moments, don’t dwell on the dark stuff. You’re going to be able to eat and taste again, the taste part will take some time. Others on this forum can attest to that.

Good luck, from Sebring, with all this!,


1st time around was 2010, Sqamous Cell Carcinoma. Radiation, chemo, surgery: Radical neck dissection.
Cancer free until 2021.
This time around, started 2021, tumors on tongue.
May 2021 partial glossectomy, October ‘21 removal of a few more recurring on tongue.
February til May 2022 immunotherapy....no improvement
July 2022, total glossectomy, living the new normal.
PET February’23 another SCC on neck....next surgery April ‘23, see where it goes from here.
Still fighting.
Sutlerjim #201942 07-11-2023 08:36 AM
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Hi Don, yeah baby, this is a tough road!! I remember when my ENT said it would take a year to recover. I said are you kidding...I am an a Ironman, he just smiled. Wow, it did take a year!1 it is day by day, week by week, Month by month. You will get to the "new Normal" just hang in there. There is light at the end of the tunnel, it is just a bit longer than ou hope11

Steve


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
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Sutlerjim #201943 07-11-2023 10:14 AM
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Thanks so much for your words of hope. I feel like such a dolt for pissing and moaning about my minor complaints, which shrink to nothing beside the heavy price you've paid. Would that I had your grace and strength. I wish you nothing but the best and thank you again for helping me to put things in perspective. May God bless you!

Sincerely,

Don of Bradenton


Donald F Amerman Jr
Manateedon #201944 07-11-2023 11:29 AM
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Hi Don,

You're complaints have merit and are welcome here! I finished my surgery and radiation treatment 3 years ago and still have issues though not as severe as what you have described. In many ways, I see my cancer experience as a blessing. I found a deeper faith than I ever imagined. My wife says I am more present with family and special events (less drawn towards work, work, work!), quicker to take a vacation day and spend time with close friends, etc. I volunteer more readily in my community, more active at church, etc. Yes, my speech is slurred. Yes, I have million miler club status with my dentist, Yes, I have large scars on my neck and arms. Yes, my neck is tight and ball of tension. Yes, I worry about cancer coming back. Yes, it takes me forever to eat. Yes, I have to be careful of anything spicy. Yadda, yadda, yadda. I would not wish cancer on anyone but I am extremely grateful for the many gifts cancer gave me.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Manateedon #201949 07-19-2023 05:03 AM
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Hi Don,
How are you feeling, it’s been a week, you finding stuff to laugh about?

Stay cool in this heat.
Remember it will get better!


1st time around was 2010, Sqamous Cell Carcinoma. Radiation, chemo, surgery: Radical neck dissection.
Cancer free until 2021.
This time around, started 2021, tumors on tongue.
May 2021 partial glossectomy, October ‘21 removal of a few more recurring on tongue.
February til May 2022 immunotherapy....no improvement
July 2022, total glossectomy, living the new normal.
PET February’23 another SCC on neck....next surgery April ‘23, see where it goes from here.
Still fighting.
Sutlerjim #201950 07-20-2023 06:41 PM
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Hey Don you are lucky to live in such beautiful city I have been there many times.


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