| | Joined: May 2017 Posts: 1 Member | OP  Member
Joined: May 2017 Posts: 1 | Very happy to have found this forum and website. My husband's journey started over 2 years ago with a tickle in his throat. One year ago he had a supra-cricoid- partial laryngectomy. (Probably mispelled) He is still on a tube feed. Much has happened in the past two years, good days and bad days. Lessons learned, and 20/20 hindsight. I look forward to meeting and sharing with others.  | | | | | 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 | Stacey, welcome to OCF! Im glad you have found our group. Its always great having survivors join our ranks. Your husband has been thru alot, you have too. You will find others here who have been thru similar situations. We are all in this together like one giant family spread out over the whole world.
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: Dec 2016 Posts: 46 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2016 Posts: 46 | Welcome Stacey! I know you will find this site filled with people who are very knowledgeable about oral cancer and willing to share their experiences with you. Everyone is super nice and very compassionate. Before this I had never participated in any social media platform, not even Facebook, and was very nervous. All I have experienced here is a lot of good advice and moral support.
This is a very tough disease and the emotional toll for both the patient and the caregiver is almost beyond description. But as Christine said, "we are all in this together." Strength in numbers.
Looking forward to hearing from you and hoping your husband continues in his recovery 🌝
Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
| | | | | Joined: Sep 2016 Posts: 111 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2016 Posts: 111 | Glad you found the site and decided to participate.
I've always felt that the effort my wife put forth during both diagnosis and subsequent surgeries / treatments, made my recovery much easier. I don't think I could have handled the situations as well as she has and continues to do.
So, with that said, feel free to ask questions, vent, or just read and gain some additional knowledge about oral cancer.
1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue
| | | | | Joined: Jul 2016 Posts: 85 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2016 Posts: 85 | Hi StaceyB. Glad you found this site for info and support. I see that your hubby has a feeding tube. I have been using a G- tube for over two years now. If you have any questions, please do not hesitate to ask.
Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !
*** Update... Jo passed away 12/20/17 ... RIP Jo ***
| | | | | Joined: May 2015 Posts: 18 Member | | Member
Joined: May 2015 Posts: 18 | Hi Stacy, 2 year wife survivor myself. I hear you about good days, bad days. I do not think our lives will ever be the same.
Kate, wife of husband with
May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58
06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin.
12/15 negative PT scan
5/16 negative PT scan
2/16 fitted with partial denture
12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime
3/17 completed 40 HBO dives.
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