| | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I have a unique opportunity for a cyclist to try some apparel that is designed for support plus get some exposure for oral cancer. I have had some interesting results but I am not a competitive cyclist. Sent me a PM if you are an oral cancer survivor and cyclist if you want some details. You could end up with some custom garments that compensate for muscles lost through neck dissection or radiation.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Ed, try contacting Davidcpa who is an avid cyclist. Wish I was able to bike like he does!
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: 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 | Ed,
Not sure I qualify since I didn't have a ND and I don't feel like I lost any muscle due to radiation....now age is a different matter...but if you want to discuss this further PM me.
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Hi Ed,
T was and am an avid cyclist. I was a pretty good triathlete before cancer, now I am just OK. BUT still competing!
I did lose a tremendous amount of muscle mass during treatment. I lost about 40lbs of mass ( gained 10 back). I laugh when I put on my cycle shorts, they look look bloomers. It is just getting cold in Southern CA and my leg warmers slide off! Just as a measurement, and astonishing to me, I went from a 44 to a 37 chest and a 16.5 to a 14 neck...I guess I am a pencil necked Geek now!I am 60 and do not think I will rebuild to the body of old! Let me know if I can help
Steve
Last edited by ChristineB; 12-05-2011 11:37 PM.
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
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