| 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 | Okay, everyone knows I am competitive. So far I have had 72GY of IMRT, 25 GY of Cyberknife, and today I had the first of 40 GY of yet another Cyberknife for a total of 137 GY or 13,700 Rad.
When I mentioned all the posts here that doctors tell patients: only one chance with radiation, you cannot re-radiate an area that has had 70 GY, blah blah blah, he just laughed and said: well it's not something a doctor should be doing for the first time so it's understandable. He has been doing basic RT/IMRT for 25 years and doing re-radiation for the last ten years. He lectures on it and the importance of avoiding necrosis.
So c'mon, I vaguely remember another poster with over 100 GY or 10,000 Rad but let's hear it from the neo-Hiroshima club 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 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Got you beat. 70 Gy. first round IMRT. 70 Gy, second round IMRT. 50 Gy. third round Cyberknife for a total of 190 Gy or 19,000 Rad.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | Sounds like a Gold Medal winner. That's why I chose the Olympic three winner model as I've been told that I have some parts of me made of bronze - or was that brass? The race is still open ladies and gentlemen 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: 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 | Come on over guys I want to attach you two to some solar panels, you both must glow in the dark!
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I think I MAY have a shot at the Bronze Medal here, but I have no idea how many GY's I received.
2004 - I had 32 radiation treatments to the left side (older style)
2008 - I had 30 treatments to the right side - IMRT
Can anyone calculate out my dosage?? This might be a dubious honour, but I rarely win ANYTHING and a Bronze Medal would work for me!!
Hugs
Donna
Last edited by Pandora99; 10-05-2012 11:47 PM. Reason: poor grammar!
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Donna
sorry: Nobody can calcuate the GY dosage just from number of TX. For example, last time at CyberKnife because it was just mop up after surgery, I got 5 GY a treatment while this time I am getting 8 GY a shot. But we can open a new contest for actual number of radiation TXs also which would give you a respectable 60.
Bear in mind that all my "charmed" medals are Imaginary. I've come under fire in the forum before for my propensity to "award medals" so I want to be clear that these are NOT OCF sanctioned nor endorsed. 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: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I beg your pardon - it was 62 Treatments not 60. Believe me, I remember those extra 2!! I will ask my Dr. how many Gy I have received when next I see them.
Turns out that may be sooner than I had thought, as I have another stitch which it trying to get out of my neck. My husband offered to pull it out, but I think I'll leave that to the dr's!!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Sorry but this is not a race I want to put on my Bucket List!
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Oh David...just because you might not be a medal winner - you don't want to play! Was thinking about you the other day for two reasons...1) I ordered your wife's cookbook and 2) It was snowing here! Hugs Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Donna,
You were the one that inspired me to do a Tri because of your Bucket List pursuits. I was thinking of you a lot when I was to sore to walk for 2 days after the Tri! lol
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ 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 | Ok...I don't know, but Kevin's card he got from his RO after tx said 60 IMRT at 125gy each for a total of 7500. He went twice a day for 30 days. I thought that was a lot...now I know it was. Does this mean he wins the gold??? One year PET tomorrow guys. Good thoughts appreciated!!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Sorry: sounds like it's a typo by a sloppy writing RO who wrote cGY instead of GY. It should have said he had 7500 cGy , which used to be called 7500 rads, which is 75 GY. If he really had 125 GY 60 times, he'd be dead especially with IMRT; physical fact that it's impossible to survive 7,500 GY, or 75,000 rads. Shame on the RO for not correctly giving the individual doses as 125cGy. Another typo the RO could have made was to leave out the period: if Kevin had 1.25GY 60x, that's very probable and normal, and adds up to 75GY.
Last edited by Charm2017; 10-08-2012 05:06 PM. Reason: typos
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 | Bummer. Thought we won...Man...we never win anything.... Looked in chart notes, yup cGY. Smart guy!! Take all the fun outta things!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | KATHY
Trust me, this is NOT a contest anyone wants to win. It's tumor humor but suits my mood right now. But keep those GY scores coming. Hint: Very unlikely anyone who has not joined the recurrence club is going to be in the running. 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 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Trust me, it's not fun being the leader. It means that I have fewer and fewer options moving forward.
I do think this is an interesting exercise. It gives us all a look at the changing face of what is an acceptable lifetime radiation dosage.
Conventional thinking not too long ago was that you could only get radiation once (70 GY) and that was it. As targeting software and methodologies have advanced, so too have additional options for those of us with recurrences.
So keep those numbers coming, I�m curious to see what others have been through.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | does sitting out in the Aussie sun drinking coffee count? WITHOUT SUNSCREEN OR A HAT?
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | [quote=klo]does sitting out in the Aussie sun drinking coffee count? WITHOUT SUNSCREEN OR A HAT?[/quote] Karen -- What? No "slip, slap, slop"? (Is that campaign still running? I remember it from a visit to Perth to see friends in the early '90s.)
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I was at our CCC today to visit my MO, and while there I asked the RO's assistant how many GY's I had received during the two sets of radiation. Turns out my total is 124 from 62 rad tx.
So, for all those who are told that they have had their lifetime dose of radiation, point to Kelly and Charm and I. The three are probably not allowed in the same room together as the glow might disrupt satellite transmissions, but we are HERE.
Not that I am a COMPETITIVE person or anything, but I do believe that gives me the Bronze Medal?? LOL
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Charm, I know. I was trying to be humorous too!! Gotta keep it light to get through the worry and with the PET the next day there was stress. All is well though. The PET was clear. I am hoping we don't ever have to be in close competition with the 3 of you, but if we do I pray we will face it with as much courage and strength as you have had. Thanks for always being here, 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Okay Coming around the curve, we find the front runners are
Kelly211 with 190 GY Charm2017 with 137 GY Pandora99 with 125 GY
Looks like Medals for all so far in the Radiation Olympics .
BUT I've decided to keep this race open a little while longer so that the infrequent posters and lurkers can still enter. Plus this thread is serving an important purpose: encouraging posters who already have had radiation treatment to go back to their doctors and get their actual GY count. Just be sure that's its apple and oranges. If your doctor' records only has RADS, or cGY, we can convert it here for you into GY. Radiation doses for cancer treatment are measured in a unit called a gray (Gy), which is a measure of the amount of radiation energy absorbed by 1 kilogram of human tissue. 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 | When I was a Tax Lobbyist in the 80's I flew hundreds of thousands of miles, member of every airlines' FF club, etc. I understand that I may be entitled to some radiation credit for that. Can you convert that for me?
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Does anyone think that David may have a tad bit of a competitive nature about him? My Gosh..who would want to win this contest...just sayin,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I looked it up David. A CT gives you. .0003 of a GY, a cross country airflight. 0002! Given those levels you would have needed to have flown 5000 flights to equal ONE (yes 1 ) GY.
Charm: While I am all for fairness, I would like to have an end date for the competition. I need to know whether the medal ceremony will be a red carpet event and find a dress for the ceremony - something that will look good with my bronze medal!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Hmmmmm, talk about competative nature......but I guess, given that it's already snowing way up there in Winnipeg, there's really nothing else to focus on.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Donna Be careful what you wish for when I'm feeling the full effects of CyberKnife and Carboplatin This contest ends ALL SOULS DAY Saturday November 2, 2012 which is the Catholic solemn feast commemorating those who have died and are now in Purgatory with a guaranteed ticket to HEAVEN. For non-Catholics, Nov 2 is the Mexican Day of the Dead or Dia de los Muertos For our Jewish posters, it marks the Day the Great Flood begins (2105BCE). So unless we hear othewise; GOLD MEDAL WINNER: KELLY211 SILVER MEDAL WINNER: CHARM2017 BRONZE MEDAL WINNER: PANDORA99 (DONNA) HORORABLE MENTION: DAVIDCPA - HPV AWARENESS HONORABLE MENTION: CHRISTINE - SMOKING AWARENESS Since these medals are imaginary, the medal ceremony will be imaginary also. I am looking forward to waltzing Donna around in her sure to be stunning dress, but I will defer to Kelly211 as the golden man for the first dance. Consideration was given to a real life ceremony, but in the interest of marital harmony (mine), and transportation/venue issues, this ceremony will also be imaginary and include the Everly Brothers singing their hit song: All I have to do is Dream, Dream, Dream. Not that there is anything wrong with it, but there will be no dance card for Kelly211 and myself. Last chance for entries; We will celebrate on November 2nd, right here at OCF forum Charm
Last edited by davidcpa; 10-19-2012 02:18 PM.
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 | Gosh...David's not in it at all??? Bummer dude!! I mean...congrats!! ;o)
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | I've marked my calendar for the "celebration"! Do we need tickets to attend? Should we make this an imaginary black tie event? Perhaps we should move it to the �Island� where it is always sunny and the food and service are superb! "Congrats" to the winners!!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | This post, which on the surface about how much radiation people have endured, is, I believe, truly about OCF patients keeping their options open. Know that what what was true in 2004 might not be true in 2007. As a patient gather as much information as possible and be proactive with our dedicated care teams to be sure they have examined in detail ALL options.
OCF is a tremendous resource as it is up to date with the latest studies, and approved techniques. I do not want people to hear "get your affairs in order" without examining every option.
For Kelli, Chram and myself, some of the extra radiations were new procedures. Do your reearch to see if it works for you.
Okay...now about the celebration....I am good with a virtual celebration but somehow that still leaves my closet barren!! Dang...here was my chace to walk the red carpet, be interviewed by the paparazzi, and be a Star for a day!! Sadly, I am still waiting for my 5 minutes of fame!! I have never even met anyone famous!!
For the first virtual celebratory dance, I love the Dream Dream Dream song, but could I suggest we all take the floor for the 1st dance with our spouses/caregivers who have made these achivements possible.
So at the close of business on "All Souls Day" we will know the honourees. And Charm, I went to a Catholic school and went to church every DAY of my life until Grade 8. All Souls day was always that ray of hope for those of us who had misbehaved a bit - we were always confident that we weren't THAT badly behaved children that we wouldn't make it to Purgatory at least!
I truly thank you Charm for bringing this topic up. I know when I was first diagnosed people would infer that I had had my "lifetime doses of radiation" and I felt that my "plan b's" were being limited by some arbitrary number. I am glad to know the limits are changng and more lives are being saved.
Hugs
Donna
Last edited by Pandora99; 10-16-2012 11:36 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I'm having my Tux cleaned just for the event.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | I almost missed DavidCPA awarding himself honorable mention thru his administrator's edit powers. I love the hubris of the Official Olympic Committee's web page: [quote]The International Olympic Committee is the supreme authority of the Olympic Movement.[/quote] so I am exercising similar authority to conform the GY Olympics to the regular Olympics: a Men's competition and a Women's competition While Kelly211 still has the gold, and I the Silver in the Men's, the Bronze is wide open. This of course means that Pandora (Donna) now is the leading contender for the Gold in the Women's division. So the contest is still open. Women go for the Silver * Bronze. Men, the Bronze is open Again, since for all practical purposes you need to have had a recurrence to have a winning chance., I will exercise that supreme authority to validate DavidCPA's unilateral action and create a special category in the Men's category : Honorable Mention for HPV awareness as well as add one for the Women's : Honorable Mention for Christine for Smoking Awareness. So come on: we need new nominations to fill the gaps 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: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Charm's Radiation Olympics competition closes on November 2nd ...so I am bringing this back to the top so all can review their stats and enter if applicable Donna
Last edited by Pandora99; 10-31-2012 09:49 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Like they say on TV You can't win if you don't play Today is the last chance to enter Right now the field looks like this MEN'S DIVISION GOLD MEDAL WINNER: KELLY211 - 190 GYSILVER MEDAL WINNER: CHARM2017 137 GYBRONZE MEDAL WINNER: KEVIN 75 GYHONORABLE MENTION: DAVIDCPA - HPV AWARENESS WOMEN'S DIVISION GOLD MEDAL WINNER PANDORA99 (DONNA) 124 GYSILVER MEDAL WINNER NO ENTRIES BRONZE MEDAL WINNER NO ENTRIES HONORABLE MENTION: CHRISTINE - SMOKING AWARENESS AGAIN, I AM NOT SCOURING THE SIGNATURE LINES TO CHECK ANY OCF MEMBER. YOU MUST ENTER TO WIN FINAL RESULTS TOMORROW CHARM HONORABLE MENTION: CHRISTINE - SMOKING AWARENESS 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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | It seems a shame to let Pandora be the only woman in the competition, and I�m sure other women have had at least the same dose as me if not more, but as Charm said �You can't win if you don't play�.
So I�ll thru my �mask� into the ring � 66 GY after 33 treatments! And I sure hope that number doesn�t go any higher!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | 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 | Okay. The GY Olympics have closed. Final awards MEN'S DIVISION GOLD MEDAL WINNER: KELLY211 - 190 GYSILVER MEDAL WINNER: CHARM2017 137 GYBRONZE MEDAL WINNER: KEVIN 75 GYHONORABLE MENTION: DAVIDCPA - HPV AWARENESS WOMEN'S DIVISION GOLD MEDAL WINNER PANDORA99 (DONNA) 124 GYSILVER MEDAL WINNER Susan2992 66 GYBRONZE MEDAL WINNER NO ENTRIES HONORABLE MENTION: CHRISTINE - SMOKING AWARENESS Thanks to all who played in the game. 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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Thank you very much for the Honorable Mention, Charm!!! I try my best to help people understand the dangers of smoking. I just recently spoke to a group of high school student leaders who work in their schools to promote change. Amazing that these teenagers have changed their school's policies about allowing workers to smoke while on school grounds and making the penalties for students caught with tobacco tougher. I have a health fair coming up soon at a local university. Since that will be an older crowd, I will get to educate them alot more. they are going to hear all about not just anti-smoking but about HPV and the Guardisil shot too. PS.... I could be a bronze winner at 35 radiation treatments. Sorry but I dont remember the GYs. Im certain there are others who are up there too. 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 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | You all get GOLD medals in my book!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Love the black humor of this competition, even though I wouldn't even have made the practice squad, let alone the quarter finals.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I would have gotten bronze..135 Gy. I always miss the prize 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Paul
As a government lawyer, I excelled at finding "loopholes" to make sure Justice was done. A little known fact (okay, little did I know it) is the the IOC (International Olympic Committee ) does award two bronze medals in the competitions of Boxing, Judo, Taekwondo, and Wrestling. So the precedent is set and approved . By the powers vested in me, by me, I hereby declare that Paul B is awarded a BRONZE MEDAL in the Charm GY Olympics
Disclaimer: The Charm GY Olympic Medals are purely imaginary, and not endorsed or approved by either OCF or the IOC. They have no monetary value and accordingly no tax liability.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Lol. Thanks Charm! I'll wear it proudly.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | "Congrats" Paul, and welcome to the Charm GY Olympics winners circle! I don't think any of us wanted to "win" this prize, but since we all reluctantly joined this club, we might as well have some fun with it! Charm, I'm really glad to hear there won't be any tax liability for winning I think we've paid the price in many ways and certainly don't need to pay the tax man on top of it!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Coming in last is ideal in this case 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
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