| | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Wish I knew about this sight a year ago. My 55 yr old husband had stage 2, neg nodes, base of tongue cancer, nonsmoker/nondrinker.
Had modified radical neck dissection in OCt, lost half his tongue but fortunately his speech and swallowing has come back significantly. He(me too) endured 7 weeks of radiation. So far so good, no reocurrances. The Gtube was a life savior and helped him recover quicker. I feel like I'm just starting to recover from this nightmare year. Watching from the sidelines and caring for him, advocating for him, etc was so stressful.
Will be happy to join this group so we can all learn from each other and advocate for ourselves and loved ones against this horrendous form of cancer.
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | 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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | he was never tested for HPV and i'm not sure why but the oncologist feels it had the characteristics of HPV. is it too late to get the samples to test?
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It shouldn't be too late. With all of this modern technology anything is on the list of possiblities.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | No as long as his tissue samples containing the SCC have been preserved they can be tested at any qualified HPV testing site.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Nancy and welcome. My also 55 year old non-smoking and casual drinking husband was diagnosed this past January with Stage IV base of tongue cancer which spread to a lymph node in his neck. The past 7 months have been life altering so say the least. My husband is almost 4 months out of treatments. You will be able to share your experience as a caregiver and wife to us semi-newbies. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Nancy, sorry to read about your husband....my story is similiar to his. However, this is an awesome site to get information, vent, ask questions....etc.....Carol If I can be of any help....let me know.
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Thank you all, I'm so happy to have found this sight. It has been a life altering experience and i have so much admiration for all of you who have endured so much battling this cancer. On another note, how do I add my profile such as caregiver to T2 etc to my message? Thanks. Dave, thanks for the info re HPV, I really want to know if this was the cause, my husband could care less and doesn't want to make a fuss about it but I need to know. so I will probably make a fuss at our next visit.
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Carol, when were you diagnosed, stage, etc. Treatment, etc.
I also have a question about treatment, my husband had a modified radical neck, hemi-glossectomy and partial removal of pharynx, lt tonsilectomy and 20 nodes(neg) had 7 weeks of IMRT. It seems from what I've read that the latest treatment is chemo and radiation first and surgery for salvage reasons.
He never had chemo I just hope we are following the right course. How long were you symptomatic before you were diagnosed. Just curious to hear from others , my husband had blatant sxs for over a year, saw 2 ENTs abnl CT scan etc and because he wasn't a drinker or smoker they dismissed cancer
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 71 | [quote=nancys2] . . how do I add my profile such as caregiver to T2 etc to my message? [/quote]
Nancy,
For your profile info go to "mystuff" in the menu bar at the top of the page. Select "profile" and the fill out the signature form at the bottom.
Welcome aboard. You will find this site provides a lot of answers. I looked at it daily once i found it during my treatment.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
| | | | | 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 | Nancy, You shouldn't have to make a scene about the HPV test. Just tell them you want his slides tested, period.
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.
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