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wilckdds #89585 02-05-2009 09:27 PM
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Great news Ray! Just remember not to overdo it � your body is still recovering.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)
wilckdds #89606 02-06-2009 07:09 AM
Joined: Sep 2006
Posts: 8,311
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Patient Advocate (old timer, 2000 posts)

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I am self employed and I had to hear, heck I still hear it almost 3 years later, "so how are you?" or "are you OK now?" or "how are you feeling these days?" till I want(ed) to press a button on my desk and my recorded voice would play. I have over 600 clients and I get a face to face with almost all of them each year.


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.
davidcpa #89630 02-06-2009 11:33 AM
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Posts: 489
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I saw one of my regular customers yesterday at the feed store. I walked up to him, called him by name and said hello. He had no clue who I was, I could tell. When he said, "I haven't seen you for a long time have I?" I helped him along with where he knew me from and I saw the light of recognition. I guess with different hair color, hardly any hair, and the loss of 30 lbs I do look different.

Patty


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
Good1 #89635 02-06-2009 12:10 PM
Joined: Jul 2008
Posts: 228
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David-

I'm not nearly as far out from treatment as you are, but over Christmas, I fell asleep on the couch one evening and apparently my husbands 85 year old great aunt and other family members kept asking my mother in law if I was alright and that they should wake me up in case something was wrong. I laughed when they told me later. Apparently they all think I'm this little frail sick kid now and they always look at me with sad eyes and tell me they're so glad I'm still around - I think they all had me written off for dead! Can't a girl take a nap on a couch after a big dinner?


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


sobradley #89638 02-06-2009 01:11 PM
Joined: Aug 2008
Posts: 716
Ray1971 Offline OP
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I'm about 50 pounds lighter and people are always telling me how good I look...then when I try to do something physical I then realize how bad the tx beat me up....At that point people look at me like what's wrong?...That's when I say to myself, "This was some serious shit...it could have been worse, but it was serious..."

The funny thing is...if you stub your toe or get sick...it still sucks...getting cancer doesn't make us immune to anything...it should...LOL

oh yea...I had to buy all new clothes!!!...nothing fits...and i'm not positive, but, it seems like my feet grew..some of my shoes seem too tight..LOL

Last edited by Ray1971; 02-06-2009 01:13 PM.

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
Ray1971 #89643 02-06-2009 01:41 PM
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Ray-

I have bought all new clothes and then some. The problem now is that even those are getting big on me - I haven't lost 50 pounds, but I'm down 20 with no signs of stopping (stupid orthostatic hypotension!). So I've given up on buying new clothes for now until my weight stops dropping like a rock and then I'll go splurge. It takes a lot of self control to not shop all the time when you live 2 minutes from an outlet mall! I've packed up a ton of clothes I bought during treatment on my shopping adventures when I was feeling good, some of which still have tags on them...woops.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


sobradley #89649 02-06-2009 03:16 PM
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Wow Ray that is amazing and wonderful news. I remember I got a few days of work in before it got cold. It was the best feeling ever!!! Your right some sort of normalcy. Anyway as soon as someone can get rid of the 6' high snow banks and keep the temp up over 10 degrees Celcius well then I can go back otherwise it is back to the puzzles and the video games... grrr... If anything have fun back at work....enjoy the independance and freedom!!


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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