| | Joined: Feb 2006 Posts: 8 Member | OP  Member
Joined: Feb 2006 Posts: 8 |
First posted here over three years ago. Stopped because I had trouble reading some of the posts when folks were having a real difficult time. Recently did six weeks with a Standford research project on Self Management in which I posted several times a week with cancer survivors. It was very helpful and gave me the incentive to post here again. Hope I can learn some more helpful information and maybe help someone else too. Will try to visit at least every other day. | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Welcome Back Hap I see that on your initial post back then you had 5 responses. Out of those: Daniel & Darrell have died (Daniel was also a Patient Advocate and Darrell has one of the earliest posts on using marijuana as medicine that I found) Cat & Lenny quit posting in April & Dec 2007, so who knows? Only Erik has posted recently about being a 5 year survivor. Good thing I'm not superstitious or else I would fear you were a jink to responders  As a fellow base of tongue cancer patient, I'm glad to see that you are doing so well. What was the research project's involvement with cancer survivors? Sounds interesting. Charm
Last edited by Charm2017; 12-12-2009 08:45 AM. Reason: update
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: 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 | Hap,
If you are going to continue to post it would be helpful if you edited your Signature Line like mine below. Go to your Profile and then go to the Signature Line.
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: Feb 2006 Posts: 8 Member | | OP Member
Joined: Feb 2006 Posts: 8 | Thanks Charm. I'll try to post tomorrow when it's not so late so I can write something sensible about the workshop.
Thanks David. I don't know, or am not sure enough about, half of the information that goes below the signature. I'll get everything I can at my next oncologist appointment. In the mean time it will have to remain sketchy.
Hap
59 years old at dx 12/05 BOT stage IV surgery chemo and Tomo RT PEG
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Welcome back Hap. I find this is going to be interesting. Nice to see you again.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hello Hap and welcome back. Your project with Stanford sounds interesting. I bet you learned alot. Being a 4 year survivor, you will be able to help others. Congrats on that milestone. Its always nice to have members come back to help others.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Feb 2006 Posts: 8 Member | | OP Member
Joined: Feb 2006 Posts: 8 | Thanks Ez. Sounds like you're doing well. And Christine, I hope that you're having a smooth recovery. It's late and I can't spend time but I couldn't resist checking in. Will post again on Friday.
Hap
59 years old at dx 12/05 BOT stage IV surgery chemo and Tomo RT PEG
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