| 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 | James, you are in great hands with David! He is very educated with all things relating to OC and its treatments. He is somebody I would want in my corner if I needed a hand. If you want someone to talk to about the pros of having a feeding tube then Im your gal. Let me know if you need any tube info. David is anti-peg for his own good reasons, but he does know alot about the benefits of a nasal tube. Best wishes! 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Welcome aboard James. Another buckeye in our midst it seems. Keep a positive attitude and let these people give you some great advice if you need it ot answer any questions you might have. I have a lot of Angels that see me thru and have been for the last 6 1/2 yrs or maybe longer. and a half with OC but much longer than that. Yours will help if you listen to them.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Let me add my own welcome to the other, James, along with my best wishes for an easy trip through this exercise.
I was delighted to read that you work out now, please get started as soon as you are able to resume working out. I have had a couple of recurrences (distant metasteses, which put me in Stage IVc) and (to my MO's astonishment) never missed a day in the gym while going through the subsequent treatments. He said that in over 20 years of practicing oncology, he'd never had a patient that could use "chemo" and "working out" in the same sentence before.
My first treatments, however, with Cisplatin were another story, I had a mediport and couldn't workout for the next 6 months, and the Cisplatin made me nauseated for 90 days. I could only keep one bottle of 350 cal Ensure + down, everything else came right up, and I lost 38 lbs, going from a very solid 192 to 154.
Nonetheless, the MO agrees with me today, that working out hard while taking chemo (which elevates the metabolism) speeds the poisons through the system and makes the process much easier to bear. I have evidence that it also speeds the excretion from the system.
At any rate, by second round of treatments, a year and a half after the first remission, I got 7 4 week cycles of Carboplatin w/Taxol (changed to Taxetere after the first 3, after I reported some further hearing loss) and had no adverse reaction beyond the hearing loss.
This brings up another point, be very vigilant for neuropathy, especially any tingling or numbness in the finger tips or toes. Neuropathy is usually permanent, and the way it can affect your feet can make you miserable. So report it ASAP if you experience it. Or tinnitis. Talk with your MO for a full list of symptoms of neuropathy.
Good luck, Jim. And since you're already in good shape physically, you may have an easier time of it than you'd otherwise expect. I know I did, and I was 70 when I got diagnosed the first time.
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | Bart - thank you for the welcome, encouragement and advice. I can't speak enough about the members of the forum. The passion and determination to assist is remarkable. I explain to those close to me the importance of this group in my life (being self sufficient up to this point) and the hope/reality of OC Tx and survival I now possess. All of you have the right to speak and we have the responsibility to listen. That is a right earned from enduring the battle. You are one more example of this. Especially at age 70? Inspirational.
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. | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Age is just a number, brother James. Your mind is where it all happens.
A positive outlook like yours is a major asset in going thorough any situation where your life is at stake. In fact, I kinda suspect that it is the determining factor in the eventual outcome.
While I know that it sounds a lot easier than it is to do, if you can detach yourself from the outcome and simply believe that you are going to come through this with flying colors; and hold on to that as you run into the inevitable flack (the damage that is inescapable, like hearing loss, or loss of some salivary function,) you'll be amazed to find it wasn't as bad as you feared. Take it from me, this can be done if you are determined to do it.
After all, it's YOUR mind. You CAN control what your attitude to anything is if you are determined to do so.
I'm going to PM you my email address. If you have questions about any of these assertions, drop me a line.
Best Regards,
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | First pre therapy treatment was administered today. Erbitux double dose preceded by benadryl and steroids. Dr. Gillisons head nurse and nurse practitioner visited. blood workup was normal. Sailed through this one. Benadryl put me to sleep for most of the 8 hour day. One more prep tool (PEG) and full therapy begins Monday June 3.
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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Good luck with the rest of treatment. I liked the Benadryl, It made me sleep too, and the decadron pumped me up lol.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Apr 2013 Posts: 9 Member | Member Joined: Apr 2013 Posts: 9 | Welcome James. Glad to read that you are set in your plan. The advice you receive here is great, nothing like people who have "been there" to assist your through this process. Good luck!
-Dan
11/2012 - Symtoms: earache 12/21/2012 - Diagnosed SCC, right tonsil 1/21/2013 - First Treatments, weekly Erbitux, Cisplatin, daily Ethyol, 7.5 weeks daily radiation 04/01/2013 - Last day of radiation!
| | | | 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 | I understand, just call when you feel up to it and have the time.
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: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | So here we go. May 11th I posted for the first time. Everyone gave me the encouragement and advice I needed to prepare. Preparation time is now over. PEG surgery was yesterday home today. 1st dose of Erbitux was Tuesday. I have gained 15 Lbs. so far and laid out a nutritional and exercise program. Radiation will start on Monday June 3rd. No introductions are over and I will move to the under treatment forum Monday and keep everyone up to date. I can't say thank you enough for the inspiration, motivation and examples all of you have given to me. You are the heroes on the battleground.
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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