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Joined: Dec 2003
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Joined: Dec 2003
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Sounds like things are improving on the home front. Don't get too impatient. Things will happen as fast as you hope and push, but be cautious if possible.

In the past 4 years I went from bedridden to 50 miles a week on the bike to thoracic paraplegia in a motorized wheelchair to 90 miles a week on the bike. 2 years ago I had no swallow and no digestion and too ill for a feeding tube or laryngectomy for breathing. I slept with a ventilator for months. I still have to use manual override to breathe, often. I aspirate most things I eat and live with pneumonia during the cold months.

I don't consider any of that as a limitation. My erratic voice and lack of back muscles that keep me from sitting up for very long are the biggest reasons I can't work, but I am still trying to find something to bring money in. It appears we may lose everything in the next year. Some things are just out of our control and we have to play the hand we're dealt.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Oct 2012
Posts: 1,275
Likes: 7
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JetAgeHobo, don't let the swallowing test get you down. It is likely that the next ENT would talk to you about a dilatation where they put in a "wire" and a balloon to open up your esophagus. The dilatation should help with swallowing. Very often, the dilatation has to be repeated as the esophagus may become narrow again in between dilatations. Sometimes doctors put in a stent to keep things open until everything is healed (apparently the esophagus is a bit of a bloody mess after a dilatation). You should be able to have a tea, or a coffee or even frozen yoghurt at this moment in time. This is not too bad. It is part of the new normal.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Nov 2002
Posts: 458
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So another update on the saga of what ever the heck is going on with me.

Last post, was dealing with a lot of coughing, hacking up gunk etc., and I mean about every 30 minutes. Started to get some pain in the throat, so tried to take it easy, but this stuff seemed involuntary, and some times this hurt like heck. Tried to see what was going on nothing obvious that I could see. Eventually things changed, and not so painful.

Couple days later I look at the tongue/throat, can see a mass on the right side, just behind the back lower molar, except farther back. UH OH... Had appointment with ENT scheduled for the following Monday, so let it go. Seemed to get bigger, more easily seen. At this point I"m convinced this is a huge tumor, I mean looking the size of a cocktail wiener.

Get to the ENT, tell him what's going on. he takes a look and is like ok, looks like tumor has spread, come back. may need chemo etc. when do I see the oncologist, etc. To be sure lets put a scope on if for a close look and do a biopsy. I'm like ok. So he sprays the heck out of my throat., nose with the numbing agent, goes out of the office for a bit. Comes back in. and he's changed his mind, maybe not cancer, but necrosis of the free flap. Does the scope, says yes,. looks like necrosis of the free flap (basically this mass is black/grey) and go see the surgeon down in L.A. right away, this afternoon. I knew that wasn't going to happen, but told him ok since it seems like all of a sudden his shorts were on fire.

So, see the reconstructive surgeon that did the free flap on Tuesday. For sure there will be more surgery, how much and how extensive remains to be seen. Tongue itself looks great, but it's all getting pushed to one side because of this mass on my right side.

And just to through another kink in the deal, found a bump on my neck more toward the front. Lots of surgery went on there. still a lot of swelling. The whole area has taken on a nice purple hue.

Starting to get a handle on this mucous goo bit, seems just after I do a tube feeding now. Been taking two tylenol at bed time, then one about every 6 hours rest of the day seems to cut any pain and keeps the excess mucous under control. Having a hard time with blender food. stomach not dealing with that too well. Sticking to mostly formula.

And that's the story, one step forward and two steps back. arghh.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
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Sorry to hear about your ongoing challenges.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
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Likes: 7
Jetagehobo, sorry about the complications. Hopefully your medical team will be able to resolve the problem. All the very best to you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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I'm wondering why you didn't go to LA right away when the "shorts on fire" doc told you to! I would be in a major panic. However, it sounds hopeful for you if they can fix the flap. You didn't need that problem but if they're onto it you could have a successful outcome.

Wishing you well!!!


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Nov 2002
Posts: 458
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Posts: 458
Problem was, the surgeon he wanted me to see is in surgery all day Monday, and most of the day Tuesay. On top of that, wrong surgeon. Not exacly sure what's going to go on at this point, just looks like a big mass taking up space for now.

Guess I'll find out more on Tuesday,go from there. In the meantime trying to keep my wife and myself calm and in decent spirits.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
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So it's nearly Tuesday.Hope you get a plan of action. You sound like an extremely brave person but I know how hard all this is.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Nov 2002
Posts: 458
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Nov 2002
Posts: 458
Had the doc's appointment yesterday. This is with the reconstructive surgeon, he took a look at what's going on and in his opinion probably a recurrence. Did a biopsy, scheduled a whole body pet/ct for Thursday, following Thurday I see the cancer surgeon, go from there. Not looking good at this point. Doc doesn't think they'll do another surgery, especialy since it looks like the cancer spread elswhere, there's a nodule in my neck that is not even close to any lymph nodes, etc.
So yesterday I was trying to keep positive, last night and this morning it kind of hit me, hope I can do chemotherapy and it has some positive affects on the tumors. See what next week brings.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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The can remove the nodule no? then maybe reradiate? hoping it's not a recurrence... hugs and healing vibes


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
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