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#201818 04-04-2023 04:16 PM
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This is my 1st time on a group forum for my condition.
I try not to let it define me, just part of my life.
Trying to keep a sense of humor.
Thought this was behind me back in 2010, after the radical neck dissection everything got back to normal, then in early ‘21 my tongue felt strange, thought I’d slept with dentures and bit my tongue.....denture Dr said I should see my head and neck guy. That led to the last 3 surgeries (culminated with total glossectomy) feeding tube, bad speech, bad swallowing, etc.
Early February the last PET scan indicated another tumor, we’re gonna cut that out Monday the 10th.

I really want to rage about the damage that the immunotherapy did to the rest of me, but it’s been almost a year and I’m improving, but not where I was before it.

The only place I’ve really been ill is my mouth...never very still, try to stay busy in my wood shop, the garden and with the chickens, I can finally pick up a 50lb bag of feed, repairing hurricane damage from September and other stuff, now getting my throat cut again,


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.
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Sutlerjim #201826 04-05-2023 11:22 AM
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Hi Jim,

Welcome to the forum and thank you for sharing your experience here. Wow, you have been through a lot. I agree with the philosophy of trying to live life to the new normal whatever that means. Keep it up and please keep posting your updates and questions.

Sending prayers for a skilled medical team and quick recovery for you so you can get back to the wood shop and chickens.

Best,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Sutlerjim #201845 04-10-2023 02:46 PM
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Just got home from today’s visit to the surgeon.

He says he got it all! Waiting for pathology to get really pleased.
The tumor got bigger than anticipated and he had to take some skin, upside is I a neck lift as a bonus. Make ma look younger, maybe.

The only pain inside my throat is from the airway they put in during the procedure. I’m not noticing any difference in my speech (which is marginal post glossectomy, anyway.) Everything was between the surface and the esophageal area, apparently he had to take a bit of hyoid bone as tumor was anchored to it according to PET scan image.

All things considered, a decent day!

After this heals, I can move on to reclined dentures and palatal drop prosthetic, which should result in clearer speech and better swallowing control.


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.
1 member likes this: ChrisCQ
Sutlerjim #201848 04-11-2023 11:16 AM
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Jim

Good news all around it sounds. So glad to read this and thanks for updating us.

Best
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Sutlerjim #201851 04-12-2023 05:35 AM
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Thanks Nels!
Overall feel pretty good, had to chase some loose chickens yesterday, luckily they got themselves cornered, no strain to it.

I’m trying real hard to stay out of the wood shop, no saw dust for a little while.

I have a hard time being still, need to be busy.


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.
1 member likes this: ChrisCQ
Sutlerjim #201922 06-07-2023 02:14 PM
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Since the last post, another tumor grew very aggressively in almost the same spot as the one that was removed on April 10th. It grew insanely fast.

Luckily? It wasn’t attached to any important structures, just in the tissue and outside of my throat.

I had it removed this morning, and was home by 1pm! Thought it would require a “couple stitches and a band-aid” .
It’s glue and full visual effect, I can be an extra on a true crime show. I was told not to look up, so as not to pop the seam, makes me wish they had skipped the neck lift last year. Left me some neck skin to work with, but, vanity.

Upside, it’s gone now, we’ll have to see with imaging if it’s gone for good.
Yes, I’m making a bit of fun of myself, because I’m not gonna cry about it!

I got home had the coffee I missed at 3am before the 2 hour drive to Orlando and some lunch in the blender. Feeling human again.


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.
1 member likes this: ChrisCQ
Sutlerjim #201923 06-13-2023 11:34 AM
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Jim

Thanks for updating us. Glad to hear it went well and you were home in time for coffee. A good reminder to stay on top of any changes we may notice in the affected areas.

Best
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Sutlerjim #201925 06-13-2023 03:18 PM
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Thanks, Nels,

Just got back, went for follow up today.

Pathology says no bad cells in the margins!

I did pop a couple stitches though, skin is stretched tight as a drumhead, I think I pointed that out before....
Vanity....I’ll be ok, should have kept my wattle.
That little bit of extra skin would’ve come in handy!

Hope this is the last time they gotta cut on me.


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.
1 member likes this: ChrisCQ
Sutlerjim #201937 07-03-2023 05:34 PM
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Sounds like a tough ride!!!. Impressed to see you handle it so well!

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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