| | 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 | You need to try Carnation Instant Breakfast VHC which has 560 cals in that same small can. Must either get it on the internet or through a pharmacy like Walgreens/Cvs/Walmart, etc but you don't need a script. Makes a huge difference when you can swallow less and get the same calories each day.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes for me I was very blessed it was only a week or two... I think it depend on your tolerance for pain. Mine was burnt and red much like your neck. I did have blisters thankfully they didn't open up. At its worst for about 5 days I would pop an oxy, wait for it to kick in, swish with magic mouthwash - then chug my ensure and snooze the pill off.... Hugs you're almost there!
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
| | | | | Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 117 | I just looked in the mirror. On all sides my tongue is covered in sores. Even the magic mouth wash doesn't make it feel better. I have to swish chloroseptic.
I sure miss being able to talk and chew. I can honestly say I don't remember clearly a time when my mouth wasn't in some kind of pain.
And as for the carnation instant breakfast I don't need it. What I've been using has more calories. I use a boost shake and this stuff called benacalorie. Mix together and you have 650 calories per shake.
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | | 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 | Well Benecalorie is an additive made By Nestle which is the same company that makes the Carnation Instant Breakfast VHV so instead of buying one product and having to buy another product and mix them together you can get the same amount of calories by buying this one product. JM2C's
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The burning in your mouth can be soothed by drinking chocolate milk. At least that worked for me. I also would drink Yoo-Hoo, it was cold and felt soothing to my sore mouth. Good luck!!!
ChristineSCC 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  | | | | | Joined: Mar 2012 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2012 Posts: 58 | [quote=John of arc]I just looked in the mirror. On all sides my tongue is covered in sores. Even the magic mouth wash doesn't make it feel better. I have to swish chloroseptic. [/quote] John - did you see your dentist before you started treatments? Did they make you fluoride trays? My RO had me wear my trays (sans the fluoride) during treatment. She said that any amount of metal in my mouth (which I have little) is what could cause the sores on the side of my tongue and the fluoride trays should help shield that a little bit. Just a thought! Mine was pretty bad and I absolutely know your pain.  It gets better. I promise.
Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi John,
You also may want to talk to your RO. It could be thrush beginning. Kevin had some issues and they put him on Diflucan for the rest of radiation. It cleared up and he never had the issue again.
As for the burns on the outside, Silvadene cream is the bomb!! It's a prescription. Good stuff!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | 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 | My dentist removed my metal fillings and replaced them with non metallic ones prior to radiation and he also fitted me with the trays and I started using them with Flouride 1 month pre Tx. That was 6 years ago. My dentist also came by my house (never called or asked him) 3 times during and post Tx to check on me and look in my mouth. GREAT GUY and he also has volunteered at all of my Oral Cancer Screenings. Kinda got off the topic.....
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: Feb 2012 Posts: 117 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 117 | One thing I hear constantly but never explained in detail is the 3-4 weeks after.
Does it continue to get worse for 3-4 weeks after? Or are you at a stand still for 3-4 weeks before it starts healing? Or does it take 3-4 weeks from the last treatment to heal. I'm just so confused and would like to know what's coming.
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | I answered this question in your other posting. As for the mess on your tongue it's very normal. Have you been drinking flattened club soda or swishing with the baking soda mix?
Take care.
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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