| Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Davidcpa Ha! too funny that the same acronym was repeated! I thought this was an Americanism that didn't translate down under. Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | It's good to have a nice laugh from these types of posts from my OCF family. I did think at first that DavidCPA was subtly bragging that his older super fit neighbor had to use a motorized bike to keep up with our OCF dope free version of Lance Armstrong. This morning I did have another cheering bit of news on the issue of speed I still have a better time for the marathon than any person who has run for President or Vice President VP candidate Paul Ryan has now formally admitted that his best marathon time is closer to 4 hours, not three hours as he initially claimed in an interview. It was a funny retraction since he claimed the "fact checker" was his brother who has the faster marathon times in his family and who has never broken three hours. His memory refreshed, Ryan now claims a 3 hour 50 minute time. Scott Douglas of Runner's World writes, "If Ryan has broken 3:00, he'd be the fastest marathoner to be on a national ticket. John Edwards has run 3:30; George W. Bush has run 3:44; Sarah Palin has run 3:59; and Al Gore has run 4:58." That leaves my 3 hours and 15 minutes as the best. Heck even my worst marathon time was 3:30 (I quit after 4 because the times were getting worse not better) My knees gave out and now the only championship I have is at my gym for holding the plank for 13 minutes and 4 seconds Trying to spend a lot of time at the gym this month to get stronger for the battle ahead in October. Have a great Labor Day weekend 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: 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 | OK I need a proof reader!
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | You guys amaze me!!!! And I mean that in a positive way!!
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: 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 | I just saw this link. I had 4 recurrences. Just completed IORT, which was a neck dissection, radiation during surgery, and a pectoral flap. In a few weeks, I will have more radiation, and chemo. Have you looked into laser surgery? Brachytherapy as mentioned or IORT? Also, they are doing more Reirridation than before now, but depends how much the area received, and reason for my flap with new tissue. Good luck.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Well still no word back from the radiology oncologist if he can devise a treatment plan. I'll give him until Monday after we get back from the David Nasto Memorial /OCF Walk in Andover NJ . Regular readers know I often advise newbies to get into their feelings of anger and fear and yearnings to be cured but not be trapped or overwhelmed by them by setting aside one or two 15 minutes of wallowing in them each day, then move on. I often rewrite songs I hear in my mind. Thought I'd share today's wallowing, brought on by an evocative Everly Brother's song: When Will I Be Loved; [quote] I've had radiation, I've had chemo When will I be cured I've been cut open, I'm on a Peg tube When will I be cured
When I get a new treatment that I want for mine It always breaks my heart in two, it happens every time I've been cheated, been mistreated When will I be cured
I've been made blue, I've been lied to, When will I be cured
When will I be cured FADE When will I be cured[/quote]
Then I think what if an Angel appeared and said I could be not only cured but made whole as if the Cancer had never happened, but I would have to lose the Love of my wife and son. I'd choose Love. As bad as this cancer is, when I was lonely and unloved, that was worse. 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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | That is just beautiful, Charm! The song I have always liked - and your version really makes it special but what really warmed my heart were your words to express so touchingly the importance of love in one's life and the people close to us.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Charm
At the risk of coming across as an ignorant , would the song be better known to some of us younger FRACKs as sung by Linda Rondstadt? Need to know this so I can sing it to myself.
Loved your clarity around what it more important to you - although it would be nice to have both love and health
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | 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 | Hugs dude... Give your drs a kick in the butt times a wasting... Awesome song.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Karen
Yes, Linda Ronstadt did a cover version which I liked in college. The most recent one I saw was John Fogerty in a 2009 You tube video. I was going to link to You Tube but could not find the original more soulful Everly brothers version.
Yes, I'd like to be whole and cured and love but as another golden oldie band sang [quote]You can't always get what you want, but if you try sometimes, you get what you need[/quote] 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
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