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#23604 06-27-2007 01:02 PM
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Hi, my name is Bob and this is my first writing here. I am a 51 years old and have never used any tobacco products. This oast April I went to see my PCP for swollen glands in my neck. He put me peniciln and orderd a CAT Scan and made an appointment with an ENT. The first CAT Scan was unreadable due to the swelling in my neck and left tonsil. Ater two weeks of strong antibiotics another CAT Scan was orderd, this one was readable. The ENT set me up for an ultrasound biopce of my neck which was positve for oral cancer. Next me ENT the removed my left tonsil which was positive for cancer. My ENT then made an appoinment with a cancer ENT who then orderd a PET Scan and same day surgery to puta scope down my throat for a complete lookinside, his look and the PET Scan showed that the cancer has not spread as of June 18. June 28 myself and my significant other meet with my ENT and a team of nine cancer specailists to make my battle plan for this enemy. As a solider for 21 years in the US Army I believe this enemy is the tuffest. My ENT says we can cure this enemy but that I will hate him (ENT) before this done. My Dentist has allready made the dental trays for me as my ENT wants to protect my teeth. I have read a lot of the entries here and have learned alot and hopefully I will be able to pass on my treatment to others. So far I can not complain about one person who has been involved with this. So to all others out going trough this hang tuff and win the war we are in. BOB


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
#23605 06-27-2007 02:54 PM
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Bob, you have the right attitude. This IS a war and recognizing that is half the battle. Ask any questions you have going in, along the way, or after treatment and there will always be someone here to answer. Good luck to you, and be sure to let us know how you are doing.

#23606 06-27-2007 10:16 PM
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Hi Bob and welcome to the OCF.
How right you are about waging a war,only difference is that this one will be very personal to you,although the enemy will have the same profile( faceless,silent,and deadly if you dont fight back).I am sure that wont be a problem for you,and the back up forces are ready and waiting to reinforce your defences any time you feel overwhelmed.

Good Luck
Liz


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.
#23607 06-28-2007 02:26 AM
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Posts: 168
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Hey Bob. I hate to hear about your dx but I'm three months post treatment and am feeling ok. I'm trying to rebuild strength and stamina right now. For me basic training in 91 was a good training for this. It is very uncomfortable at times but the treatments won't kill me if I do my part to keep myself healthy and use the rest of my team (the docs) to do their part. That is what basic training taught me. I can do alot more than I ever imagined and a little pain and exhaustion wouldn't kill me. :-)

Educate yourself about the procedures they plan to do and also check out new options that are proven. The one thing I did that helped me was I didn't put an expectation on how tough I was going to be through my treatments. I just told myself I was going to be the best warrior I could be. It helped on the days I needed to reach deep down and it helped on the days I had to allow myself to just rest. Hang in there and thank you for your service for us. Lee


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
#23608 06-30-2007 01:46 AM
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Bob,

I would get your cancer cells tested for HPV ASAP. You generally fit the mold for HPV and cancer docs are learning new things everyday about treating HPV+ SCC.


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.
#23609 06-30-2007 01:51 AM
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Bob,

One more thing, don't let the ENT perform a neck disection unless you get other qualified opinions, especially if it's HPV+.


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.
#23610 06-30-2007 08:17 AM
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David: I'm ignorant about all this and am trying to learn all that I can, so as to help my husband in his treatment. What do you mean by "no disection, if HPV positive.." Why not? Thanks for your help! (PS I asked husband's physician if he would test for HPV, because I have read some recent articles, and he said he will)


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#23611 06-30-2007 11:01 AM
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Emmylou,

Now I didn't say definitely no ND if HPV+. What I said was definitely get another qualified opinion especially if he was HPV+.

The reason I said that is:

1. Some research has indicated that the 5 yr survival rate of patients with ND's is no better than those without ND's and a lot of CCC's are now not recommending a ND until after they see what concurrent chemorad achieves;

2. The current thinking is that HPV+ SCC is a biologically different cancer from HPV- SCC and that studies have shown that HPV+ SCC responds better to current treatment than HPV- SCC, and

3. HPV usually presents itself in younger (40-50's) patients and usually with nonsmokers, casual drinkers, BOT or tonsil primaries and usually nodal involvement.

At the last meeting with my RO, he told me that IF HE WERE TREATING ME TODAY, as opposed to just 10 months ago, he might not have been as agressive as he was. Unfortunately I didn't get to follow up with questions, but I have a ton I plan to ask him next time.

So that's why if I were him and if I were anyone for that matter, I would get tested for HPV, especially if I were a nonsmoker.

If I did test positive I would want to be treated by a CCC currently on top of HPV+ SCC issues.


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.
#23612 06-30-2007 03:53 PM
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Posts: 510
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David: Many thanks for the info! I want to learn all that I can so that I can ask intelligent questions when speaking with the doctors. There's no such thing as 'too much information'...in my opinion. You have posted so much that I have found useful already! None of you know how much finding this website has meant to me during these past few weeks! I am SO thankful!


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#23613 07-01-2007 01:45 AM
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Posts: 107
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Goodmorning David,
Just a note of encouragement. In Sept 05 at 48 years I was DX with tonsiler cancer that had spread to 1 lymph node. I fought all of the battles 39 tx imrt radiation, 3 rounds of chemo, modified neck dissection and finally 39 HBO treatments. There was never a doubt that I was going to beat this , the glass was always half full for me and I met this enemy head on and told him daily that he was not going to win. Today I am 50 ,a proud grandpa and never felt better . I am glad that you found us to be a soldier and I know that you will not leave your fellow soldiers behind, so if you do not mind taking orders from an ex sailor: you will reach behind you and pull those up this hill who are coming behind yyou, you will become part of this network that works it's magic by supporting our fellow troopers. Your knowledge will increase as will the level of help that you can offer others. My friend you are now a welcome part of our team , start fighting bro we need the likes of you.
Lenny

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