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Hi Gary, SCC again I suspect, other than that I feel pretty good.

PET/CT scheduled Tuesday, so that's good, MRI I guess I'll have to hunt a place to see if there's one free earlier. Not an insurance issue, more a machine availability issue from what I gather. Guess this is one of the few machines between LA and SF, so booked pretty solid. Haven't really gotten a good reason for the long lead time on the MRI.

At this point just want to know where we stand on all this, how bad, etc.


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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Ok, time for an update. Did the PET/CT last week, results were good as far as there was no spread, cancer localized to the surface of the tongue according to the scan.

Did the MRI today, just the head, so the surgeons can see how much and where they need to operate. Going to see the Head and Neck guy at UCLA next week, hopefully can get on a track to get this done before Christmas.

My ENT up here in Santa Barbara says for sure they will be doing free flap reconstruction, been reading up on that, I get the concept, had that on the first go around, except it didn't take. Not exactly sure they did all that good a job on it to tell the truth.

Trying to stay positive but wondering what the recovery time is with the free flap, what's involved, etc. I suspect techniques and such have changed in the last 12 years, as well as just differences in treatment from country to country.

Taking this one day at a time, trying to gain weight but finding that almost impossible, doing protein shakes, as big a meal as I can get down, which sometimes isn't that much.

Geez, let's get this done already.


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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Maybe you might want to try some weight gainer protein powder. It sounds like things are rolling along.


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
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Have you tried drinking fortified milk? Put in four tablespoons of skim milk powder for every cup of whole milk. Blend it and keep it in the fridge. This raises the caloric content to 265. It adds protein but not fat. You can use the milk in soups and anything else that you add milk to.

I was originally from Hong Kong. Which hospital were you treated at, Hong Kong Sanatorium?

All the 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.
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The recovery from the flap is pretty good. Assuming everything goes okay. The ENT usually does the removal and at my hospital a plastics guy does the graft. Mine did a great job. I was eating and drinking fine by week three (with a little maneuvering. I placed the food on my good side washed it back with water or almond milk). Mind you the first few days after surgery I looked horrendous and was all full of staples, stitches, bandages, etc...

had a trache, NG tube, catheter, and IV. Graft site and two donor sites.

Lost the trache day three, IV day 2, catheter day 1, and NG was removed day two and put back in day 4 (I demanded they remove it, it was wrapped around my trache on the inside)

went home day 10.

hugs.


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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[quote=JetAgeHobo]Taking this one day at a time, trying to gain weight but finding that almost impossible, doing protein shakes, as big a meal as I can get down, which sometimes isn't that much. [/quote]

Try Christine's crazy one billion calorie milkshake, or something simliar. Of course this means your diet is very high in sugar and fat - it's not ideal, but you need the calories. As long as you're still getting some protein (adding the protein powder really does help), hopefully you can prevent significant muscle loss. I lived on these milkshakes for a few months and went through a whole bunch of cocoa, peanut butter, ice cream, full fat milk and protein powder.

Edit: Here's a link to Christine's recipe. I made similar milkshakes but usually bought vanilla ice cream so I could change it up. Added things like frozen cherries, a can of coconut milk, dry malt extract, etc,

Last edited by Vanpaddler; 11-26-2014 04:08 PM.

Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
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"OCF Down Under"
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Sorry to welcome you back, but glad you remembered OCF.

Remember how important it is to manage the wait times. There are many wait times to come, and being calm about the next wait time is the key. As long as you know what you're waiting for and how long it will be, there's no point thinking too far beyond that. Easy to say I know, but if the situation was reversed you'd probably be reminding me of the same thing.

Venting is always welcome here. Hope to hear an update as things progress.


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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I've become sort of addicted to Christine's milkshakes so that seven months after treatment I'm putting on too much weight! They got me through the tough times and the dietician at the hospital said I was a legend for losing only a few kilos during surgery and radiation.

I've had the forearm free flap twice, once on my tongue and four years later for my cheek and gum. The tongue op was bigger and I have to admit that the first 8 days were hard. After Day 8 my progress was rapid and after both surgeries I was going for long walks again after two or three weeks. I am one of those people who have bad hallucinations with morphine so for my 2nd big op I was better prepared and had Fentanyl instead. It made a big difference.

The donor and graft sites heal up well and while that might take several weeks it doesn't affect daily living.

It would pay to ask about tracheotomies before you have the surgery and read up on them. I went into my first surgery in a state of ignorance and got used to the trache just before it was removed.

Hope you get your date for surgery soon.

Cheers
Maureen


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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Thanks for the info all. First consult with the surgeon at UCLA is Thursday, hopefully more information then, but who knows. Weight loss is an issue, I started on thyroid medicine about 3 months ago, and when it kicked in fully I started loosing weight. Have to eat a LOT to keep it on, more than I'm comfortable eating even without the tongue CA. Kind of like belly up to the Golden Corral buffet and stuff myself type of eating to keep the weight on.

Still feel pretty strong though, problem is keeping the energy level up.

May have to try Christine's milkshakes, although my wife's a health food nut, or a fan of real healthy eating. Low fat and she believes tumors feed on sugar, so no sugar/candy for me. Probably will be making a trip to the dietician at the local cancer center to get this sorted, need a 'referee' as far as the food bit goes.

And so it goes, one day at a time.


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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"OCF Canuck"
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I like your wife... ;o)


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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