| Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | First - Liz thank you so much for staying "active" on these boards. Unfortunately death is sometimes a reality of any type of cancer. Your personal experience with all of this is so invaluable. I think with most "health based" message boards, people take what they want and then when they are through treatments or have lost their loved one they move on. I stay active on these message boards because I have been helped so much by everyone and if I can answer a question for someone or offer some small support, then I still "belong" here. This is going to sound dumb but I am also slightly paranoid that if I leave that John's cancer will come back. I know that sounds silly but that is my reality. So....here I will stay until I feel it is time to move on.
Again thank you so much to all the "active" posters. Your knowledge and personal experiences are greatly appreciated.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Agree Liz that your help is invaluable. And also agree with Wanda that people need to know that death from this disease is a very real possibility.
There are plenty of us with good outcomes and that is one of the other reasons why I stay..to help folks see that you can indeed come out the other side of this even with a fairly dire diagnosis and also to relay what our journey was like and what we learned.
Thanks as well to all those that helped us when we needed it!
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | Many times I find myself "popping in", scanning the messages and if things look to be adequately covered, then silently moving on, until a topic that I feel I can offer a bit of assistance comes along. I guess what I am saying, just because I happen to be quiet does not mean I'm not here or paying attention . Kevin 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Sep 2010 Posts: 3 Member | Member Joined: Sep 2010 Posts: 3 | I just recently 'returned' to the OCF board after several years absence. My ex-husband, father of my son, has been diagnosed w/oral cancer and I came back to get information about treatments & any improvement in outcome statistics, for my son. When my brother was diagnosed, I found this board tremendously useful & even comforting.
I left the board after my brother died because it was upsetting to me to read about others who also lost their fight. I became very fond of some of posters and I cried when any of them had a reoccurrence. Like so many others, I wanted to put the cancer experience behind me, way behind me. Also, I feel that the best advice & wisdom comes from the cancer survivors themselves & primary caregivers, those currently fighting the fight.
Also, my brother's outcome wasn't positive, his tongue cancer metastasized to his lungs just two years after completing treatment. Like Cookey, I felt his outcome might dismay newcomers. However, I do want to say that he did have a very good healthy year, almost normal, his second year after treatment. He managed to visit Jim Morrison's Grave in Paris (he had neuramyopathy in his feet so it took some effort to walk to the cemetery). This was on his life list of things he wanted to do. My point is that after the horrors of treatment, there were good times with his grandchildren, with his wife in Paris (she didn't visit Jim Morrison's grave) and life was good.
Keep up the good work, every one of you! - Candace
Candace brother, stage IV tongue cancer, died 2006
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Liz - How nice to see you checking back in! I've thought so much about you these last few days and wondered how you were doing! I followed your posts and cried with you many times. I felt your strength and compassion and caring and it helped me to be stronger in caring for my son.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | 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 | Its knowing things like that that make it all worth while.I will never really leave OCF its just time to take a back seat until needed again lol.I dont know if you have ever done this Anne Marie but i sometimes go to the OCF members list and just browse through it.So many names bring back memories,even a few tears, but a part of my life i hold in my heart and always will do.Love to you both xxxx
Last edited by Cookey; 11-01-2010 01:56 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: 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 | Liz,
There is someone currently on this site that could really use your experience right now. Her husband is terminal and Tx is not an option.
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 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | I don't post as often as I used to because I don't want people to be discouraged by Neil's outcome. I would welcome pm's however. I check in here almost everyday. While it is true that life goes on I still feel an intense attachment to those on this board.
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: Apr 2010 Posts: 45 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2010 Posts: 45 | I also "pop in" from time to time and if I don't have anything to add, I still like to take away some new information and, of course, catch up on Oral Cancer in the news, etc.
Just reached 8 years on October 23rd - still clear but not without some weird things popping up from time to time - all which clear up in a week - one of those changes that happen to 99.9% of the population but a pain in the ass and the confidence just the same.
Take care everyone - stay well!! Beth
2002 - SCC - T1N0M0 - ever vigilant
| | | | 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 David please feel free to pass on my details to her if you think i can help x
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.
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