| | Joined: Feb 2012 Posts: 32 Likes: 4 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Feb 2012 Posts: 32 Likes: 4 | Hello, My name is Stephen and I am an oral cancer survivor. I am so blessed to be able to say it has been 7 years and 9 months since I was diagnosed with SCC on the base of my tongue; and as far as I know I'm cancer free. I've been following this support forum for a while, and finally decided to register and introduce myself. I finally decided to join for 2 reasons: I am terrified to say I think I might be experiencing a reoccurrence and have no one to talk to about it; yet despite that I believe my story may still be able to help someone (I hope). That's all for now. Thanks
Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Stephen
Welcome to OCF. yeah, recurrence is terrifying. Been there, done that. You are right that this is the place to find people who truly understand what you are going through. Feel free to post your thoughts, anxiety, fears, etc here.
I don't think any of us ever get over the fear that the everpresent threat of the cancer coming back poses.
But its all part of the new normal.
Keep the Faith
Charm
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I hate the freaking new normal!!! Sorry, really struggling today with the fear. I know it's partly because of the PET coming up and it's partly because I am reading so much about recurrence. I WANT to get old with Kevin. I can't even think about being without him. Holy crap I'm a mess today....
Sorry, wrong forum for this, it's just this post and BOT....sigh.
Please keep in touch!! Sorry to melt down there for a minute.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Kathy I know it's hard but you'll get through it and things will be fine. I tend to freak before important dates too... hugs... and welcome Stephen. I sincerely hope you aren't having a recurrence.. will say a prayer for you and wishing you an all clear in the near future.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 |
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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