#76863 07-11-2008 08:30 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | OP  "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | After five years I have been entered into the 'WINS' column at my oral cancer clinic with a recurrence at this stage considered to be 'extremely remote' in my case.
This site has been wonderful for me - support and info. I have received support and love from around the world. I was fortunate enough to be able to celebrate with Gabe (whom I met on this site) after my last appointment yesterday. She is a patient at the same clinic but made a special trip yesterday. While waiting for me Gabe was told that the clinic's doctors will all be attending the head and neck conference in San Francisco at the end of this month.
I hope that OCF members who are undergoing treatment at present will take heart and know that treatment can be effective. Did I wonder whether it was worth it 3 weeks into radiation? YES, I sure did because it was such a difficult road. But was it worth it. YES, YES, YES.
Love to you all from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Helen,
You have made my day. Thanks for sharing your wonderful news. Even though we didn't get to meet last year when I was in Sydney, I feel like we are family. I'm so glad that you and Gabe hooked up and your support for each other is a testament to the wonderful things that this group can accomplish.
Here's to the next five years.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | 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 | Once again congratulations Helen. I hope to be in the same position in just over 3 years from now. Great catching up again and having that small celebration even if it was only coffee. The sun is well and truly over the yardarm now so will say cheers again with a glass of wine this time  Love Gabriele
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi helen and gabe
congratulations helen what great news,and gabe you will get there.you have obviously got great treatment,and i wish rays mum(parellel-silence) had fared as well.I am not sure where in australia she is being treated,but when she told me her mums doctor hadn't heard of using steroids to reduce facial swelling in oral cancer,and he had to ring other doctors for advice after ray mentioned it too him,i was shocked.She has had to be admitted to hospital and is waiting for a hospice bed,but ray is not happy with the treatment she is getting.
funny how different hospitals have different ways..
glad you two are so chirpy
take care
love liz
Last edited by Cookey; 07-11-2008 11:37 PM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | OP "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Thankyou Jerry and Liz for your kind words. Gabe, unfortunately I can't celebrate with a glass of red because it still tastes like vinegar to me.
Gabe and I attend a specialist multi-discipline head and neck oncology unit at a major Sydney teaching hospital. Sorry to hear about Ray's mum not having an experienced doctor. Australia is a huge land mass with a relatively small population, and if a patient does not live within easy distance of a major city then I'm afraid specialist treatment can be hard to come by. Possibly that is the reason but it is certainly not acceptable.
Love from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | 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 | Great Great news. I hope I make that anniversary. I hope we all make it as well.
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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