| | Joined: Jul 2010 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 27 | When I was diagnosed last May, I read about neck dissections, loss of saliva and permanent issues from treatment. I'm a marathon runner, and I didn't know if I would ever be able to run at all again ... I just didn't know, because there's no guidance about that out there. It might seem like a trivial thing when you're looking at the kind of severe treatment we have to do, but it was among my biggest fears. And hopes. Because if I could run marathons again, that would mean I not just survived, but thrived and got my life back.
I'm seven and a half months out of treatment. My saliva remains low and I have a touch of L'Hermite's Syndrome. My jaw hurts a little on the right side at times. But otherwise, I have my sense of taste and my stamina back.
Today I ran a half-marathon. I was a minute per mile slower than I was for a half last April, but that's because I haven't tried to run faster yet. Well, I tried in November, and spent a wiped-out December paying the price.
I've been lucky. Now I get to start training for the Marine Corps Marathon in October. I was signed up last year, and was able to get a deferment because of treatment.
But it would have meant the world to me to hear this 11 months ago: Physically, less than 8 months after treatment, I am barely changed from where I was a year ago.
Stay active, reach out to people, pray and do everything you can to keep your head up and fight.
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
| | | | | 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 | Randy congrats on doing so well with your recovery. I love reading success stories like yours. You will still see improvements for many more months. Best wishes with your upcoming marathon!!!
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | What wonderful news to read, Randy. It gives us all hope, and that is what counts. Congratulations, and do great running marathons.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Well done. As you said, it would have meant the world for you to hear this when you were going thru treatment, so I hope someone at that stage now reads your post and can see that recovery is ahead! Great job on your marathon.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | This is what I love to hear...awesome on the half marathon... 
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: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Randy: You are an inspiration!!! Congrats on your amazing progress. I am one month into recovery - ended treatment on 3/31 - and your story gives me hope. Thanks for sharing. You made my day. And you're right about reaching out to people and praying. Bless you. I send you lots of healing thoughts. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | I watched the folks finish the Boston marathon yesterday and I think you're all crazy. Congratulations on your negative tests.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Jul 2010 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 27 | Michelle, did they just give you a PEG automatically? Were you able to continue going to the gym?
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
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