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"OCF Canuck"
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"OCF Canuck"
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Your tongue may become a bit more mobile once it has healed and the swelling has subsided. I know some People have their tongue tethered to the floor of their mouth and later have it loosened so I woudk wait hpgreat through this heal and then if you feel the need broach the subject with your surgeon. Best of luck and be patient... Takes time,,,


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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Thanks Cheryl. At this point realy I'm taking it day by day, see one part of the surgical team on teh 9th,. the other on the 13th. See how I"m progressing and such. I think for now I've "plateaued" in that its just waiting for the various wounds to heal, sterri strips to fall off, bruises to heal, get some strength back, get my wits back about me. quit spitting up gunk, all that fun stuff.

Try and get out for walks in our small town every day, get the strength built back up on the leg they took the flap from. Lots of benches can stop and rest.


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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So it's now about 3 weeks out from surgery, and I kind of feel only small improvement from 2 weeks out. Less "gunk" but still tons of saliva, I guess maybe because I'm not swallowing it I"m having to spit/suction. Still trying to sort out this feeding schedule, every three hours isn't fun when it gets to the midnight and 3 am feeding. What I do (or try to do) is one feeding when I wake up about 2 or so, then do an can and a half at 6 and noon. Seems I'm getting some stomach acid feedback if I do too much in the G tube at once, so having to watch that. Weight has been maintaining, so that's good at least.

Steri-strips have all fallen off, so some progress there. Every once in a while I get a little blood from one point of the incision or other, sort of like surface blood clots coming off, nothing big deal.

Tongue, I guess swelling is going down, I can swallow, I'm just not making any attempts at swallowing anything until cleared to do so by the doc, I'd prefer a healthcare professional were within reach in case I run something down the wrong pipe. I do have to say one part of my tongue (original tongue) is bumping more against a molar than I would like right at a stitch line with the reconstructed tongue, I'm not too keen on that.

Speech is a mess., but people seem to be able to understand me, even on the phone. I did have an issue with UPS, trying to track a package and them not understanding the AWB... even tried a text to speech program on the iPad... Finally got a live person to talk to and they could understand enough to get it done.

Problem, I can't pronounce my family name.... but then again I couldn't pronounce it very well before 9AM and 2 cups of coffee before the surgery...

Getting out for walks, every day a little bit better. This cold snap we've had tending to keep me inside more than I'd like.

One thing I did notice is now when i'm riding in a car it seems too "overwhelming" for lack of a better term, visually things going by too fast. Also seem I don't have the same level of concentration I had previous. I'm chalking that up to side effects from an 11 hour surgery and not really getting a broad range of nutrients from the Nestle feeding formula. Bobby needs pizza and cheeseburgers.

And so it goes...


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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Sounds like things are going well. I would guess the tons of saliva are just mucus being dispatched to all the damaged mucus membrane for protection and beginning repair. Hang in there!


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: Nov 2009
Posts: 644
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"OCF Down Under, Kiwi"
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Yes, sounds as if you are progressing well. Love your sense of humour, often a saving grace for us all. I met a woman who couldn't pronounce her Christian name after surgery so told people different easier-to-say names when asked.

It's great that you can walk a little more each day. (Does it rain in California?)


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.
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Just a note re difficult names to understand. It happens to many of us even without surgery and with perfect pronunciation. My children and I always give a fake name when waiting for an order or reservation anyplace. We decided on "Thomas" because sometimes when we used different names, we would forget which name we used so when it was called out, we didn't recognize it. It saves having to spell it out. You could even say "Batman" and see if that gets you quicker service.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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My family name is one of those "want to buy a vowel?" Hungarian names, lots of exra consonents, etc.

I usualliy give the name "Ski" when doing the restaurant thing. And, oddly enough, the majority of the time the hostess calls "SKY" - even though it's spelled SKI in the waitlist.

Of course they ask if that's correct, and I have to comment, when you put two boards on your feet and go down a snowy hill, are you going snow skying???

And so it goes...


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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First follow up visit with the H&N surgeon, this is the one that did the tumour removal, etc. Seemed pretty impressed with the fact my speach is at least somewhat understandable, considering he's classifying this as a 'near total glossectomy." I'm slowly getting the gory details of the surgery, geez, no wonder I've been sore in strange places. Also was impressed that I"m looking pretty good, getting around ok, didn't loose a lot of weight etc. And in general good shape for 3 weeks out of surgery.

He was able to save some of the base of the tongue, a little sliver of the left side, and the back of the tongue. The rest is free flap reconstruction. Healing going well, still a good amount of swelling, but all in all he seems to thing I'm doing very well. Called in a med student and the resident to also have a look and listen.

Have another follow up with the reconstructive surgeon next week (bit of a pain these follow up visits, down in Westwood section of LA, an I ilve up the coast about 120 miles, 3 hours each way with traffic). He'll order the swallow study and get that part going.

One wrinkle in all this, this was definately a new cancer, not a recurrence of the old one. Previousl was well differentiated squamous cell carcinoma, this is poorly differentiated etc. He's suggesting I see a radiaton oncologist to see if there's any possibilites to do radiation, however, since I've already had 2 go arounds he doesn't think it's possible. Doc also said in this case not much proof one way or another that having radiation would be benificial, or not having it would be detrimental.

Will see what comes of that, need to see my local H&N guy that I started with, get referred, etc. I'm inclined to skip the radiation this time around.

Otherwise, all the margins were clear, no spread to lymphatic system, etc.

Still 3 to 6 months out from returning to work I suspect. Did visit the office for a bit, on the way to the docs appointment, had breakfast with some work friends, chatted with my boss a bit, and went to a department "meet and greet" with the new senior VP's of course got to see the rest of the co-workers, etc. Was pretty knackered by the end of that 2 hours visit, for sure can't do a series of whole days. Not that I'm in a big hurry to go back anyway, Plan of the day for the next few weeks is rest, do some walks, some on line courses, etc. And re-learn how to eat. I'll be satisfied if I wind up being able to do soft food, drinks, near term.

And that's the update.


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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It sounds like you are doing very good, Bob! Great news.


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: Mar 2014
Posts: 286
"OCF Down Under"
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"OCF Down Under"
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Joined: Mar 2014
Posts: 286
I like reading the fighting spirit between the lines. Good job!


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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