| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 |
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | 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 | Done. Doing the survey made me realize how many resources I had available to me and USED during my treatments. They even missed a few like home care post surgery and programs offered by Cancercare (free) such as Yoga for cancer patients, etc.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Donna, your post reminded me of all the various programs offered at the hospital where my son was treated. I did a lot of waiting in different places while my son was seen and being treated, so I noticed all the little signs and pamphlets around. There was even a class on Laughter Therapy!
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 |
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Did it, it was easy. Everyone who's able to type should definitely pitch in and help these people!
d2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jan 2006 Posts: 757 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 1 | The survey only took about 10 minutes and asked some good questions. I passed the request on to some of my OC friends who don't normally come on the forum.
At the end they asked you if you want a copy of the results -- I said YES! I may share the report with some of my doctors.
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)
| | | | | Joined: Nov 2010 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 27 | Will send my husband when he gets home tonight! He is a Psychologist and loves to help with research!! :o)
Wife of Tom, 42
SCC/Tonsil DX 9/23/2010
PEG/Port 11/2010
TX Begins 11/16/2010
Chemo ended 12/28/2010
Radiation ended 1/6/2011
Neutropenia 1/7/2011
Osteoradionecrosis 09/2011
Jaw Resection/Flap 01/2012
*********************
How do you want to be remembered?
| | | | | Joined: Sep 2010 Posts: 63 "OCF Kiwi Down Under" Supporting Member (50+ posts) | | "OCF Kiwi Down Under" Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 63 |
45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Great response so far! Anyone else able to take 10 minutes to take a survey and help change the future for oral cancer patients? https://www.surveymonkey.com/s/XKQ8WPL
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: Mar 2011 Posts: 7 Member | | Member
Joined: Mar 2011 Posts: 7 |
SCC Stage 2 - April 2002
Of Tongue, Tonsil, Lymph Node
Surgery, Radiation, Chemothearpy
Trismus
Trach Tube - Feb 2008
Difficulty Swallowing and really bad dry mouth
Married With 2 Fur Babies Simba & Shadow
Happy to be surviving!
| | |
| Forums23 Topics18,266 Posts197,183 Members13,381 | | Most Online2,167
11:16 PM | | |
|
