#85215 12-01-2008 07:36 PM | Joined: Dec 2008 Posts: 1 Member | OP Member Joined: Dec 2008 Posts: 1 | Hi: My husband completed 7 weeks of radiation and chemo for Stage IV squamous cell poorly differentiated head and neck cancer. Primary tongue. All I can say is, it was a summer that lasted for five years. Feeding tube is out, he now has no saliva, undergoing some physical therapy for the muscle that was removed from his shoulder and neck. His only food is Carnation VHC four cans per day with soup and a few cooked veggies if he can swallow. We need any support and encouragement. Our follow up scans are for February. | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Tell him to hang in there! And to keep swallowing, stretching his tongue, mouth and jaw and walk as much and as far as he can. Recovering from treatment is a long, long road, but it can be done - there's lots of proof of that on this site.
Oh, and Welcome!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I agree with Margaret.. keep doing all of that,, but get tha nourishment in there too. Keep a good positive attitude and let it know you are the boss. I kind of think that the dry mouth is the worst part. Have to have liquid with you at all times. Welcome to the worlds best web site with the most caring people.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Sep 2008 Posts: 250 | Biotene moisturing products for dry mouth relief are very helpful. They are available in most pharmacies, and also Walmart, etc in with the mouth washes, toothpastes, etc. My favorite is the mouth spray, but they also have mouth wash and toothpaste.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08 "A bend in the road is not the end of the road, unless you fail to make the turn" Passed away 12/14/08
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Welcome and I hope that you receive the support that you need.
My doctor also gave me a mouth rinse called Caphosol that requires a prescription. It comes in two parts that you mix together and then swish and spit. I really like it. I gets ride of what I fondly refer to as "the slime" and them keeps my mouth from being so dry for quite awhile. I especially like the results if I use it before I go to bed. I don't wake up with such a dry. mucousy mess in my mouth. Someone also sugested that I get a humidifier for the bedroom at night and I plan to pick one up this week.
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Running a vaporizer at night will make him much more comfortable and tell him to make sure he keeps on swallowing. Smoothies, eggs, creamed soups, casseroles. Keep lots of water on hand to help with swallowing during the meals (and I do mean LOTS!) I didn't know about yogurt (the stirred kind) before my surgeries but now wonder how I managed without it! I eat alot of yogurt with berries or other fruit in it, and also use the yogurt to cover small pieces of cake, etc which makes that so much easier.
He needs to keep swallowing. Meals that now take about a hour to consume about 1/2 a bowl of soup will speed up - but it takes time. I can remember being exhausted AND frustrated after one of these one hour meals!
Keep posting - lots here have invaluable experience.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I lived on VHC during my Tx and for about a year post Tx. As I could eat more and more solid foods I would mix the VHC with equal parts whole milk and drink that with each meal since I hated eating because of the dry mouth and poor taste. The good news is that slowly and I mean slowly he will regain his saliva and his taste. It took me 16 months post Tx before I could say I really began to enjoy eating again so patience is demanded.
If you are going to continue to post and I hope you do, it's better if you modify your signature to include his "stats" so that when you post the responder knows better where you're coming from and you don't have to repeat yourself over and over. See mine below as an example. To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away.
Most importantly tell him he needs to consume a minimum of 3000 cals a day and also drink plenty of liquids. Also tell him that what he's experiencing now is normal. This recovery just takes a great deal of time and the body needs all the hydration and fuel he can give it to heal itself.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Keep on swallowing.
Keep on stretching jaw open.
Both of these are "Use 'em or lose 'em" functions.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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