| | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I agree. Kevin finished tx in late October and had a PET in March. It showed a spot and sent everyone into an uproar, but then an MRI determined it to only be inflammation. It is TOO soon for the PET. Glad you're going to ask for the MRI.
Best of luck, We are here for you!
Kathy
Oh and PS..they NEVER saw his tumor with the scope. Means nothing that they can't see it.
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: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Appreciate the info. Some terms I will search for, but what is "a flap"?
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Usually when they take skin from somewhere and use it to rebuild something. I had part of my tongue rebuilt with skin from my wrist.
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: 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 | Anytime you want to know the meaning of somewthing said re HNC's just scroll down to the bottom of any page and click on SEARCH. This site is FULL of info.
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: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | MRI 3 pm tomorrow/Wednesday!
I've thought of another explanation for the pain. I've had a tightness on both sides of my throat Radiation ended. It was clearly more noticeable during a yawn.
On September 7th I had an Endoscopy performed to biopsy esophagus.
They put me out to perform this.
I suspect that the use of the apparatus to jack my mouth open, likely ignored the tightness and ripped scarring tissue. It was within a 1-3 days that this pain started.
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | 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 | Good luck with your test tomorrow Walter! Scar tissue can be painful. I hope thats all it is or as you mentioned that by forcing your mouth open they pushed it just a little too far and now its hurting. You are still recovering as just finishing treatments fairly recently. Keep up your good nutrition and hydration plus add some high protein whey powder (found in most drug stores by the ensure) to help with your healing.
Best wishes!!!
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: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Christine, I appreciate your encouragement and I do have some of the whey protein powder. Had a blender of milk fruit and whey powder yesterday.
I am not eating enough. It hurts. I can drink, but get so low on energy that I'm afraid I get apathetic.
Just drank a bottle of Boost.
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | 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 | How many calories in that Boost can?
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Your thought sounds perfectly logical. Hope that's all it is!
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: 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 | Walter, the only way to feel better is to focus more on your nutrition and hydration. If you already have the whey powder, please start using it to boost yourself back up. Every single day push yourself to take in a minimum of 2500 calories and 48 oz of water. if you can somehow take more in do it. I loved Davidcpa's idea about drinking a can of boost and water every hour. So when it turns 9am drink a boost at 10 am drink a bottle of water at 11 am have another boost, etc. Boost makes a very high calorie drink which has 560 calories in it which will help by making it less you have to drink to hit your calories for the day. I bet if you push yourself to take more in you will begin to feel better.
Hang in there, you already went thru the very worst of this awful illness.
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 | | |
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