| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I'll be thinking of you. The waiting is the hardest part.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi,
I was diagnosed with cancer of the larynx on July 2 and didn't have surgery until Aug 15. Delay was caused by doctors vacation schedules. They didn't seem the least bit concerned by the delay and in my case it had no bad consequences. Has he already had radiation to the neck?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2009 Posts: 9 Member | | OP Member
Joined: Feb 2009 Posts: 9 | Thanks for the continuing support....did find out that the super duper bronchoscopy is really called a SuperDimension Bronchoscopy. Supposed to allow the docs to go much deeper into lungs than with traditional bronchoscopy.
To Eileen...yes,hes has already had radiation from his first round due to 4+ lymph nodes in the neck and positive margins from his initial tongue surgery. Docs are very reluctant to do any more radiation due to the increased risks of severe side effects.
Anyway, he's scheduled for another CT scan on Mar 13 (hope Fri 13th brings good news) to map out the Bronchoscopy biopsy program/plan. Guess they need to pan how to get where their going.
Continued thanks and support to all.
Dad Age 72: Dx 2/07 SCC BOT Right T2N2BM0 Stage IVa
2.5cm prim partial gloss margins not clear w/right neck dissect 12 nodes, 4+ w/ex-cap spread 2/28/07
30xIMRT(60Gy)-5xCarboplatin+Taxol 4-5/07
Recur SCC Pharynx Dx 2/09 w/possible mets to lungs
Lung biops scheduled for March 26, 2009
| | | | | Joined: Feb 2009 Posts: 9 Member | | OP Member
Joined: Feb 2009 Posts: 9 | Hi all....I apologize..been forever since my last post. Update on Dad. He had SuperDimension Bronchoscopy in March....amazing technology! They were able to traverse his lung passages all the way to the two suspect met sites and take tissue samples for biopsy...both negative! Whew!
So with no spread to lungs, they scheduled him for total laryngectomy in April, which went very well. They also took more neck nodes and found two more positives, but he was already maxed on radiation to that area from first round, so they did not do either rad or more chemo.
After six weeks (beginning of June), he had voice prosthesis inserted, so he now is able to communicate much better than with external device.
He's been on a total liquid diet since his first diagnosis and initial tongue/neck surgery in Feb 2007 (alot of Splash and Ensure Plus), but is doing well, actually some weight gain.
In last 30 days, has been experiencing intensifying pain up right side of neck, from shoulder to ear and continuing up behind right ear to top of skull. Next scheduled scan and check coming up on Nov 4. Fingers crossed that upcoming scan and check will not indicate recurrance and that this is something else.
Well that's it...proud of my Dad, very strong man. Upbeat attitude and doing as much as any 75 year-old should! Gets out on the lake in the boat as he's enjoyed that all his life. Just make sure he's wearing his special self-inflating life vest.
Take care all, my prayers are with you all.
Dad Age 72: Dx 2/07 SCC BOT Right T2N2BM0 Stage IVa
2.5cm prim partial gloss margins not clear w/right neck dissect 12 nodes, 4+ w/ex-cap spread 2/28/07
30xIMRT(60Gy)-5xCarboplatin+Taxol 4-5/07
Recur SCC Pharynx Dx 2/09 w/possible mets to lungs
Lung biops scheduled for March 26, 2009
| | | | | 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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | What is this special self inflating life vest? Does it keep him far enough out of the water that his trach is out of the water?
I'm also a larygectomee and have not had the nerve to go out on the water in or even in the water since my surgery. I grew up at a lake and the Jersey shore so really miss it. Good for him for doing what he enjoys.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2009 Posts: 9 Member | | OP Member
Joined: Feb 2009 Posts: 9 | Hello all,
Sorry again for my long absence....I want to sincerely thank everyone here on this site. My last post on October 30, 2009 indicated that my Dad was experiencing new pains and was going in for some new checks.
Sadly to report, his cancer did recur again, this time it was not treatable. He passed away on April 30 of this year.
My brother and I were 24 x 7 primary care givers during his last two months fighting this persistent disease.
If I can leave any of you caregivers with one message, it would be to persevere through the difficult times (they will happen)and take advantage of every opportunity you have to spend as much quality time as possible. Our quality times were getting out the old family movies and having "movie nights". I can't tell you how priceless the family connection has been and contiunes to be for me.
I do pray every day that a reliable and lasting way will be found to help and cure everyone who is inflicted with this disease. This is a great site for information and support. Thank-you to all the mediators and sponsors who volunteer so much of their time and resources to make this available.
May God hold you all in his hands.
Dad Age 72: Dx 2/07 SCC BOT Right T2N2BM0 Stage IVa
2.5cm prim partial gloss margins not clear w/right neck dissect 12 nodes, 4+ w/ex-cap spread 2/28/07
30xIMRT(60Gy)-5xCarboplatin+Taxol 4-5/07
Recur SCC Pharynx Dx 2/09 w/possible mets to lungs
Lung biops scheduled for March 26, 2009
| | | | | 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 | Im sorry to hear of your loss of your father. Glad you made some wonderful memories before he passed away. Those movie nights were a great idea. Let those warm memories give you comfort in your time of sorrow. Your father was a very lucky man to have such a close family by his side.
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 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | I'm sorry for your loss. I'll be sure to keep you in my thoughts and prayers.
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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