| | Joined: Apr 2010 Posts: 45 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 45 | Anita - Thanks for the welcome and congrats on the "all clear" on the PETs. Since just "coming out" yesterday, the OC community on this site has been nothing but encouraging. I looked forward to coming on this morning to see what's up with everyone! Remember to take care of you and time for you. How is your husband doing now since surgery?
2002 - SCC - T1N0M0 - ever vigilant
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Sootersmom,
He is doing well. Thank you for asking. His new graft looks better every day. The thing we now are focused on is the severe pain he gets when he eats. I am hopeful we will be able to resolve this but it may mean going to a pain specialist. The PS wants to see if it will work itself out in the next 3 weeks. It surely makes eating a horrific chore for him.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Welcome Scootersmom,
We all love seeing survivors post here. Congratulations and best wishes for continued good health.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Apr 2010 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 45 | Thanks Gabe - I've learned so much in the last 24 hours! We've all had different versions of this nasty stuff but we're all hanging tough. Looking forward to getting to know more of you and hopefully in person at an awareness/fundraising event - early detection saved my life - that and a tough oral surgeon - it's something I'll have to watch for forever but doesn't everyone have something they're watching out for?
Stay healthy !! Signing off for the night - we're having a terrible thunderstorm and I don't have a surge protector! Take care!
2002 - SCC - T1N0M0 - ever vigilant
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Welcome to the forum. It's nice to have a long term survivior join the board. Here's to your continued good health.
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: Apr 2010 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 45 | Hi Eileen and thanks - this is when it really is great to be able to say "It takes one to know one" in the survivor category. It's sad that a long term survivor is as few as 8 years - I made alot of changes in my life - I don't know if they have had anything to do with no recurrence but I'm going to continue doing what I've been doing and hope that's the ticket. You also have quite a few years under your belt - how are you doing and dealing? Beth
2002 - SCC - T1N0M0 - ever vigilant
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I'm 'doing and dealing' just fine. Still working full time, still traveling and still spending my summer weekends on the beach. I miss not being able to go in the ocean or sing, but it beats the alternative. I'll live. In comparison to many, I got off easy. I'm too stubborn to give up.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | ScootersMom
Congratulations on almost 8 years of NED. It is depressing to read the official survival statistics on oral cancer. A poster like you shows there is hope. I can still "croak out" a tune (literally sounds like croaking) but I could never "sing" pleasantly anyway so no big loss for me. I do miss going into the ocean or swimming laps though.
Eileen
I'm sorry to hear you can no longer sing, I'll bet you had carried a tune very well.
Charm
Last edited by Charm2017; 05-07-2010 02:29 PM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Charm,
I was a second alto before I had radiation so you can imagine where that left me. I never sang professionally so it is only a personal loss. The sad part was I was just getting my voice back four years out when I was diagnosed with the larynx cancer. We still go to the opera and listen most Saturdays, I just can't sing along. Show tunes and Christmas carols are what bother me the most. I used to belt them out every weekend on our way back from the shore. If that is the worse of my problems, I'll live. I'm not certain I could live with the side effects you are coping with. That's a mighty tough hand you have been dealt. You never cease to amaze me with your positive outlook.
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
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