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#145227 01-29-2012 05:04 PM
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Hi All,

It has been a long time sence I posted. Things have been going ok. Bob goes for his year pet scan Feb. 10. I am sure all will be ok, as he really does not show any signs of relapse. Bob turned bright red where he had radiation (almost like an alergic reation to something). This is the second time it has happened in a two month period. The first time he turned red swelled up a liitle and about 2 days later it went away. This time he turned red and swelled up in the same place same way, but now he has pain on the right lower side of his neck(oppisite side of where cancer was) it looked lumpy and hard at first(thursday)it still is hard but the swelling has gone down, so it doesn't look as big. The side where the cancer was has two very tender and sore spots. Bob says it feels like he got radiation again on the out side. He is also now peeling like he had radiation, and says he felt a water blister pop when he rubbed his chin, because his fingers were wet after that.
Has anyone had this happen a year after radiation, and/or is this normal a year after radiation. Thanks for any help in this matter.
Deb


Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
DSCRANE #145230 01-29-2012 06:31 PM
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I havent heard of anything like that but there are all kinds of after effects that can happen. Those things can pop up years after a patient has finished treatment. Its called late effects. Here is an article from the Mayo Clinic that might help with some general info about late after effects.

Mayo Clinic After Effects article

Best wishes with the upcoming tests.

Last edited by ChristineB; 01-29-2012 06:31 PM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Christine,

Thanks for getting back so fast. I looked it up, I have seen those in my search for what this might be. Just hoping that sence none of those matched I would fine something here. Just one of those unexplainable things, I guess. Thank you

Deb


Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
DSCRANE #145232 01-29-2012 07:02 PM
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Posts: 291
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Deb,
The only thing I can say is that sometimes my neck will get really warm and feel hot to the touch, only the side that had surgery as well. The rest of me can be cool, even cold, so that it is really an uncomfortable situation. Sometimes I think it is partly nerves, as in being tense. I work on my relaxation, then it gets better.

I did not get red with radiation until the last week and a half. The rest of the symptoms I am not familiar with, although at times I think the surgical side has lumps and bumps, it is really just my carotid and other structures when I check it out. There are lots of little zings of pain from time to time, randomly.

Hoping the best for you,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
AnneO #145242 01-29-2012 09:42 PM
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Posts: 383
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Deb:
Not encountered anything like that but have had a few "Weird" late effects happen (Lost thyroid function, Numbness, tingling, some swelling, etc). I would bring it up when you all go in for the scan.
Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

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The weirdest thing that I have had happen is that all of a sudden my tongue will swell up and I won't be able to talk for a few minutes. It doesn't last long, not even five minutes, and doesn't happen every day, maybe every couple of weeks or so. I have mentioned it to my doctors and nobody seems to know what causes it. These treaments are really the gifts that keep on giving!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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It's bizarre mine does too. icecream... Does this maybe something causes an influx of blood to the area?


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #145259 01-30-2012 10:22 AM
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I don't know. There doesn't seem to be any rhyme or reason to it. Sometimes it happens when I have been talking more than usual, or have been out in the air, or doing something strenuous. It's weird, isn't? There doesn't seem to be any one thing that causes it. Sometimes it is embarrassing if I have to speak. Last spring I had to present a scholarship at the local high school and it happened after I walked into the school from the parking lot. I had to park at a short distance from the school, so I don't know if that had anything to do with it. Fortunately, I was OK by the time I had to make my presentation, but it was a worry when it happened.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
Joined: Dec 2010
Posts: 291
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When I try to eat ice cream, my tongue goes numb and feels swollen, so I am with you on there.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
AnneO #145271 01-30-2012 02:17 PM
Joined: Jun 2007
Posts: 10,507
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I had something similar happen to me a few years ago. It was due to the cold and poor circulation. My tongue would kinda freeze up and turn gray. It hurt like heck but only lasted about a minute. It happened when I went outside in the cold. Luckily that annoying after effect has disappeared in time.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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