| | Joined: Jul 2011 Posts: 1 Member | OP  Member
Joined: Jul 2011 Posts: 1 | Howdy folks,
I haven't been on the Forum for quite a while. I have a few things I could use a little survivor insight on and figured I'd get better answers here than I sometimes do at the doc.
Thankfully, I am still cancer-free since treatment ended in mid-2003. Like many others, I've been fighting the side effects of that treatment, some of it pretty aggressive, for the last 9 years.
So now I'm back, seeking some wisdom and hoping I can share some of the things I've learned with other forum members.
Best to all,
Jim in Pittsburgh
Feb 02: DX SCC Left tongue-Part. L gloss/L neck dissect
Oct 02: Recurr 1-L glossect/IMRT
Feb 03: Recurr 2-Huge RND/IMRT 2x dly/Chemo
04->11: Misc Surgs due to Osteoradionecrosis-Teeth/Jaw Fractures/Failed Rebuild, etc.
Now: Cancer-free/Trach/G-Tube | | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Jim,
I feel like I could learn way more from you than you could learn from me! You certainly had some down times during your survivorship, but apparently the aggressive re-treatment you had saved you. We do have some individuals who have experienced recurrences and are surviving.
Looking forward to hearing more from you!
Best,
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | 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 | Hi and welcome backs! Congrats on being cancer free! Hugs!
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: 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 |
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 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So glad to see you back again, Jim - and to see that you are cancer-free. Hope those side effects ease up a little.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 |
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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