| | 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 | Lani,
That's a remarkable story and unfortunately one that I read way to often re doctors not doing their best but hopefully all of that is behind you now and you will continue to recover. I also hope that you can continue to post here and help others with your experiences.
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: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Pete, Hmmmmmm - you've got my wheels turning.  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: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Thank you for your welcome. My spirits are especially high right now, as I had another cancer scare last week that was just that - just a scare. I found a blister on my tongue (what's left of it) that bled when it broke. I was going to Gainesville that day for a CT scan (they're watching my lungs, too) and just walked in to Dr, Bill's office, unexpected and terrified. My angel said it didn't look or feel like cancer and that he was sure it wasn't. (He was right, of course. It has since healed.) I gave him a huge hug and cried with relief. Still don't know where it came from, though. I don't remember burning my mouth recently, and, being totally toothless, I couldn't have bitten it. I don't exactly spend a great deal of time gnawing on sharp bones, either. I already have gotten help from "all you guys" just by roaming through the many posts. I can't wait to try that Biotene spray. It could change things for me SO MUCH. Pretty soon I hope to be able to return the favor and give supportive and helpful answers to others. Just want to get my feet a little wetter, first. 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Biotene spray is pretty good but I think the biotene mouth wash does a better job. I even have biotene toothpast for the teeth I don't have. LOL Dr said to use it to brush my tongue and anything else that doesn't bite back when I brush.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Lani, I have my rads mask and without teeth, I should impress the trick or treats with fear LOL Gotta have fun with this stuff and enjoy what we can.. I like your attitude and upbeat words. LOL Reminds me of myself. But I am a lil goofy at times.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I was lucky and someone steered me to this site before I ever had surgery. Probably one of my angels that rides my shoulder to keep me straight. I'm glad you found us Lani, you add to the great group of people involved here. Should have said welcome aboard in the 1st post.
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) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Like my signature says: "A bend in the road is not the end of the road, unless you fail to make the turn." Embrace your new-found freedom from cavities. Enjoy the fact that you don't have to answer the phone if you don't feel like it and you can blame your mouth for it. Eat that ice cream with guilt-free abandon. Add cake to it because you need the calories. If you can't be in the life you love, than love the life you're in. (I don't think I have to put that one in quotes, because I changed the words to suit me.) All in all, I'm in great spirits (tho' I really do crave a big toasted sub sandwich, potato chips, crispy-crust pizza, .........)
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
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