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| | Joined: Jul 2013 Posts: 16 Likes: 1 Member | OP  Member
Joined: Jul 2013 Posts: 16 Likes: 1 | I've been absent from this forum for far longer than I intended. I was wanting to make a celebration post back in August when I hit my 10 year cancer free point, but life's distractions got the better of me. Today when the feelings started hitting hard I knew where I had to go.
When I joined this group ten years ago I was one of the younger patients at 29 years old, but a month later on this forum I met the family of an 18 year old who had the same diagnosis. Today marks the 9 year anniversary of her passing. So much has changed for me in those years. I now have 3 wonderful children, changed jobs a couple times, climbed the corporate ladder a bit at my current job. I feel like I'm in a good place in life, and she didn't get to experience any of it. They say grief comes in waves, but I was not expecting this tsunami today. I'm not really sure what I'm looking for here, maybe just a sounding board of people that would understand. Anyway, thanks for reading and the solidarity.
Dan
Stage 4 SCC on right underside of tongue
DX on 7/19/13 at age 29, no tobacco, light drinking
Partial Glossectomy/reconstruction/neck disection 8/20/13
Temp Trach, PEG tube
4/59 lymph nodes cancerous, 1 with extracapsular extension
Chemo - Cisplatin - 3 treatments started on 10/01/13
Radiation - 33 treatments started on 10/02/13
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ChrisCQ | | | | | Joined: Jun 2021 Posts: 42 Likes: 8 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2021 Posts: 42 Likes: 8 | Hi Dan, thanks for sharing the thoughts. !0m years is a milestone. Congrads and hope the next 10 is as great
Has been quiet on the forum these days, stay well
Steve
steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | Seems like we were both going through the treatments at the same time. I am now 10 years out and felt led to check up on the site. We should be grateful every day that we survived and not take a moment for granted. Live life to the fullest my friend.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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ChrisCQ | | | | | Joined: Mar 2025 Posts: 6 Member | | Member
Joined: Mar 2025 Posts: 6 | Hello Danbert, steve1 and JamesD, I find it hard sometimes to discern between survivor guilt, which I have recognized it, and living life to its fullest given my daily side effects since caner free from HPV p16 positive in the spring of 2024. Lots of radiation to cure the cancer however since that ended in August/2024 I have terrible side effects of a dry mouth or xeorstomia and absolutely no appetite. I am currently going daily for two hours for hyperbaric oxygen Rx after reading it was successful for a patient with the same cancer and side effects from the US and the Mayo Clinic. I am slowly regaining my saliva after just over 30 sessions and going for 50. In all this survival band "beating" cancer or it going into remission and rejoicing where does quality of life come in. To me it isn't just not dying that counts but what is your QUALITY of life after surviving it. Any thoughts.
BNickerson
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