| | Joined: Mar 2005 Posts: 58 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 58 | Lani,
Thank you so much for the information about the thread on the General Board about "Has anyone heard from Minnie". As the OCF came on my screen I noticed "Minnie" so I immediately clicked on to learn that we lost her this aftrnoon. She was an inspriation for so many. How sad!
Hacklene
Hacklene
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Johnny,
I will pray for you. I am sorry that you must go through this. Reading the posts and how you are loved and respected here, you must be a very courageous person. Try to be positive, I'm know that it is hard. I have been down the recurrence road also. Don't try to make he journey alone - reach out - people tht care about you are here for you.
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: 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 |
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 2008 Posts: 46 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2008 Posts: 46 | Well, At 615 this AM I was able to swallow water for the first time in over 8 weeks. Now it is only little tiny bits of water. Nothing like what you all can swallow. BUT, I'll take it. for the first time in a long time, my throat feels moistened. When I took some water into my mouth and tilted my head back, I swallowed. I could feel the water go all the way down. from the back of my throat to the bottom of the belly. Man I tell you, the things we all take for granted.
I can remember when swallowing water, coffee, or chugging gatoraide was nothing but a normal reflex. All those muscles that are required to make that one simple thing happen, one does not realize. Take away the tongue and see how much you miss. A total glossectomy sucks in more than one way. But the ability to swallow is in the top of the list from my view point. T he Doctor is talking about a special made upper denture that will allow me to be able to swallow even better somehow. I have that appointment in about 2 weeks. And yes they are talking about being able to swallow food as well. Right now, I do not know how that will be possible. I can not see that in my neat future at all. But is sure sounds pretty good. Time will tell.
This is months of recoop time and progress comes in small baby steps. This is something I still have issues with. But no matter what my mind says... my body says....tough stuff!
What will come next? I am not sure. Hopefully the numbness and pain will all go away and the range of motion will return to normal. Again....small baby steps. As have said before, Day by day!
Thanks to all here who inquire and care. You are all great!
John
Stage 4A SSC Left Tonsil, back of tongue and Lymph nodes on left side. Tonsil removed, Chemo and Radiation treatments completed on June 26, 2008.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Johnny, I want to add my support as you adjust to your new challenges. It sounds like you are doing a great job, though I can tell that you realize the work ahead. What I love is your determination to keep moving, one step at a time.....You are an inspiration. Please keep writing to us about your baby steps. Soon those steps will be bigger!
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Johnny, you are an inspiration and I feel guilty complaining about my issues. You have great heart and attitude. You are tough as can be...My step-father said, "If a man has to learn how to live by the tips of his fingernails..he'll do it...he may not like it...but he'll do it!"
Stay strong you have a lot of prayers
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | 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 | Johnny,
Great attitude and I'm sure you will do great and lets hope that new denture will do the trick.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | http://www.surviving-oral-cancer.com/2008/12/brief-update.htmlThe above link is to Johnny's Blog...his daughter gave an update on his situation...Johnny needs some prayers...
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | 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 | Ray, thanks for posting this. I had checked his blog just a couple days ago since we havent heard anything it made me concerned.
I will post a comment directly on his site.
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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