#2165 04-09-2004 02:41 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Everyone, A question to ponder?
If we were to all get together for a weekend where would be the best location? Somewhere the major airlines service? Somewhere not to expensive?(admit it were all a bunch of cheapskates) And somewhere were a high percentage of members would be able to attend. I'll throw out some locations that I can think of , Las Vegas?, St. Louis?, Denver? Pheonix? Chicago? New York?
Also when would be a good time for all and who would take charge of making this happen. It's a hope I have will happen. My Mother used to tell me "no time like the present" another one of her wisdoms was "Those who won't stoop to pick up a penny will never have a dollar" I can't walk past a penny lying there without thinking of that statement. Enough memories, I am game to be on a comittee to plan a reunion. Any helpers please email me.
Your soon to be seen Danny Boy!!!!!
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#2166 04-09-2004 04:43 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | A convention of sorts... I am a shriner, I love conventions... Motorcycles on the diving board??? I have a few contacts in the entertainment industry, if needed... Celebs just love benefits.... My vote would be St, Louis (mid america) May 2005. It has been my experience, these things take time to organize and events thrown together in haste are usually flops, unless you have really informed and dedicated organizers. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#2167 04-10-2004 03:22 AM | Joined: Apr 2004 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2004 Posts: 33 | What a great idea. A city where alot of airlines fly direct to would be a good bet.Vegas or Phoenix are my choices. And I should (I hope) be eating real food by May 2005. | | |
#2168 04-10-2004 06:09 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Phoenix or Vegas probably have the cheapest airfare as well.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2169 04-10-2004 06:51 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | Phoenix sounds good to me, although I`ve not been to Vegas...........i had also mentioned to Bob the possibility of approaching Angel Flight for folks who don`t have the money to fly commercial.........Angel Flight East certainly knew Frank and I.......it`s a possibility they could toss around..........I`d like to see it this year, could we pull it off say in 6 months? Weather would be great in Phoenix.....anyway, I`m aboard, and can`t wait.......Dee | | |
#2170 04-10-2004 07:44 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Phoenix & Vegas are both desert climates and have almost identical weather. Phoenix can get a little hotter during the dry period - up to 118 degrees. The worst time of the year is actually during the monsoon season from around July through October. The hot season starts around May.
The Vegas advantage would be the gamblers specials for transportation and reasonable hotel expenses - as long as a major convention isn't in town at the same time like CES or something.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2171 04-11-2004 12:29 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Either Vegas or St. Louis would be good, I grew up in St. Louis so know the place intimately, such as price point hotels with good banquet facitilites. Also where to get good fried catfish and hush puppies and some great Italian food.
Downside is STL isn't a major airline hub anymore since the demise of TWA and may not be as easily accessible by air as you would think.
Vegas is fairly well served by airlines, and has a wide variety of hotels, trick is to get a decent price. Desert climate may be difficult for those of us whose saliva glands have been fried.
October is good both places, not so hot in Vegas, not cold yet in St. Louis.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#2172 04-11-2004 01:23 PM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | My vote`s for Vegas, haven`t been there, lived in Arizona for year, I`ve already talked my daughter into the trip. i think we need a bright lights fun place......who knows we might see ELVIS..................Dee | | |
#2173 04-11-2004 01:52 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Would this reunion be something for families or just for "us"? I would love to see it happen and am excited at the idea of meeting all of you.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#2174 04-11-2004 02:22 PM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | I`m hoping it`s for families, since I don`t want to fly alone........I mean we have caregivers and spouses, I just figured families were included..but at this point we need to figure out how many are planning on coming, some kind of general figure to work with........I`m really excited too, can`t wait...........Dee | | |
#2175 04-11-2004 03:15 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Sep 2003 Posts: 139 | Aha! I just signed on and guess where I live? About 10 miles SE of Vegas! Sounds like a go to me. Gary has an excellent point tho......if there is a major convention here (CES, rodeo) there are no rooms to be had. Be glad to help! Judy U
Judy U Stage I SCC floor of mouth, left radical neck dissection 8/03
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#2176 04-11-2004 04:00 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Sounds like Vegas is getting the overwhelming vote. Of course I would imagine family/caregivers, etc would be welcome, almost a necessity for some I imagine. Otherwise what's the point?
Doesn't have to be Vegas proper though I would think, maybe Henderson (suburb of) maybe not so expensive. I might be wrong but I think what I call the first tier hotels like MGM Grand, NY NY are kind of pricey. Hotels like the old Stardust not so bad. Remembering that some folks are on a tight budget these days.
Judy, sounds like you and my mom are almost neighbors, she's in Bullhead City these days. Don't ask.
So for argument's sake, lets narrow down to say October in Vegas. Any conventions etc then? Any way to find out? Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#2177 04-12-2004 04:49 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | Always wanted to go to Vegas! Now I have an excuse!! Knowing how much time most of us that have survived were out of work going through treatments a less expensive hotel would be a nice idea. Just hope it has a pool! Look forward to meeting all of you! Put us down for 4! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#2178 04-12-2004 05:32 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | Wow, it`s so great to see this taking shape, can`t you just feel the excitment in the air.....with all so many of us have been through, we should be able to pull this off with flying colors !!!!!!! Look out Vegas here we come !!!!!!!!!!!!!! Dee | | |
#2179 04-12-2004 06:36 AM | Joined: Apr 2004 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2004 Posts: 33 | Vegas gets my vote too - I've always wanted to go but... I do recall hearing that Octber is a big convention month in Vegas. | | |
#2180 04-12-2004 08:54 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Ok Vegas but why not January... My treatment should be done and the hotels should be cheaper.. and the flights as well... Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#2181 04-12-2004 12:47 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Ok, sounds like Vegas it is. Date not too certain yet.
If anyone wants to volunteer to do some research on prices, hotels, or if there area any conventions/what would be a good time, it would be a great help.
In the meantime I"ll see if there's anyone with casino/hotel connections I can put a "lean" on for some good deals.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#2182 04-12-2004 01:00 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I believe that CES (Consumer Electronic Show) has their convention in Vegas in early January - that's a really big show they probably book every room!
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2183 04-12-2004 02:50 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Vegas sounds like a good location. We could stay outside of Vegas if need be. Bob (jetagehobo)has offered his services as Chairman. I want a part in making this happen and Judy has offered to help also. We will have to send out notices of a range of dates and pick one. I will contact Bob and see how we can make this happen.
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#2184 04-12-2004 02:55 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Sep 2003 Posts: 139 | Hi Bob, I did some checking, and if you promise not to appoint me chair, I will not ask why your mother is in Bull Head City. The Gaming Expo is here 10/5-10/7. AARP is mtg here 10/14-10/17 Yes I am going! The rodeo is sold out from year to year and it is in Dec. I got some prices for the first weekend in Oct. Quotes for 2 people at a variety of hotels. Range is Sahara @ 89.95 to Bellagio @249.00 per night. Downtown the Golden Nugget is 146.00/nt. I live in Henderson..the Holiday Inn Express is sold out and Green Valley Ranch Station Casino is $250.00! Problem with Henderson is transportation as you are about 10 miles from the Strip. Not necessary to rent cars as there are plenty of shuttles to airport and cabs on the Strip when you stay there. Just being helpful here!
Judy U Stage I SCC floor of mouth, left radical neck dissection 8/03
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#2185 04-12-2004 02:59 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Sep 2003 Posts: 139 | Anyone can look up prices.......go to vegas.com and have fun! Judy U
Judy U Stage I SCC floor of mouth, left radical neck dissection 8/03
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#2186 04-12-2004 03:44 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Thanks Judy, Safe bet we won't be doing Bellagio.
Cheap weekend deals in LV are pretty dear these days, all the people from LA head out on Friday night, come back on Sunday. I-15 from Barstow on in is a parking lot on Sunday afternoons.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#2187 04-12-2004 11:46 PM | Anonymous Unregistered | Anonymous Unregistered | Just a quick thought - used to book meetings for my company. If you call and give the hotels a number of rooms (and even a lunch in a meeting room for a number of people) they will give you better rates. This is done through the sales office not online or reservations. Just everyone individually booking rooms will cost a lot more money and probably have us spread all over town. My two cents - Dinah (and yes I will volunteer to help...my husband and I just had a conversation about trying to put something together in San Antonio or Dallas. So how timely is this? It is a lot of work, but we can do it and save money if it becomes a structered gathering) | | |
#2188 04-13-2004 01:28 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | one of the southern states in January.. only requirements.. an airport and a hotel...We can make our own fun... Where is empty in January in the USA? Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#2189 04-13-2004 05:09 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | A weekend in Dallas could be really cheap. Rental cars on weekends are often under $20 a day because of the large inventories for business travelers during the week. Ditto on rooms. Just a thought.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#2190 04-13-2004 06:26 AM | Anonymous Unregistered | Anonymous Unregistered | Okay, I hereby volunteer to scout out a hotel location. I will check Vegas first and find also what months will be the least expensive. I believe summer is least expensive in Vegas. (also very hot) January people are still trying to get away from cold weather and the rates stay high. I will start in Vegas and then move to Dallas? I'll need some inforamtion first, so I guess I will start a new thread to gather info so I can talk to hotels.
Does anybody mind if I do this??
I will be away from the computer till Thursday afternoon. Then I'll check this thread to see if anyone minds if I start this process. If no one minds then we'll start a new thread with head counts and such. There are many things to consider to a "First Annual OCF Convention". We can post about them as we go.
Take care all, Dinah | | |
#2191 04-13-2004 06:57 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | Hi, Dinah, works for me...I volunteered too, yeh, right, I can`t even organize my brain!!!! But I told Bob I follow directions very well.....First Annual, here we come........Hugs, Dee | | |
#2192 04-13-2004 10:43 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I think we are losing track of where the cost is going to be. The hotel room will probably be shared by at least two people so doean't necessarily have to be dirt cheap. The airfare is going to be the killer if you pick someplace like Dallas. I just did a quick check for Newark to Dallas and it is $487. Trust me for that kind of money and usually a lot less, I can go to Europe in October. East to West coast fares are generally cheapest unless you go to someplace like Vegas or Orlando that wants your business.
As to best time, I personally think summer is bad. I spend a lot on money to rent a place at the shore May to October so am not about to fly off to someplace else during those months. Other members will have their own vacation plans that will keep them from coming. I think Jnauary or February are good but you have to work around the holidays in those months. March might even be good.
I think we need to get an idea of the number of rooms we are going to need for how many nights and a list of what airports people are flying from if we are going to try to negociate a package deal. I think you can usually get some kind of a package if you have at least 6 people. Other ideas, not cheap. A cruise, Lake Tahoe, Toronto, Mexico, San Francisco, some carribbean island, northern Florida which is cheap because it is not warm in January.
Just some thoughts. I think Vegas is probably cheapest as long as we can stay away from the tables.
Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#2193 04-13-2004 11:28 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Dinah, I do alot of traveling with my gyms, making arrangements for close to 200 people at times. The Embassy Suites and the Marriott motels are the best to deal with. Embassy Suites is tops in my book, all the rooms are suites and the price was a range of $109-$130 per night. Each room had two double beds in the bedroom with a Queen size pull out sofa in the living room area. The cooked to order FREE continental breakfast was a HUGE bonus and no parking fees were also wonderful. Just some suggestions. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#2194 04-13-2004 05:58 PM | Joined: Mar 2003 Posts: 16 Member | Member Joined: Mar 2003 Posts: 16 | I would love to join in on the fun with my husband too, so count us in. Las Vegas is a dream of his yet to be fulfilled! | | |
#2195 04-14-2004 01:56 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | I`ve been wondering about New Orleans......lot of magic afoot..........Hugs, Dee | | |
#2196 04-14-2004 10:50 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I didn't suggest New Orleans because I didn't think it was easy to fly to. When I tried to find an airfare to there from PHL or Newark earlier this year, all went through Atlanta and cost a lot of money. Then last night I was watching TV and SOUTHWEST had an add for $99 each way airfares from Phila to New Orleans, Houston and several other places. I'd love to go to New Orleans, but not in the summer. My company has had its convention there in late April right before the jazz festival so I suspect it might be cheaper at that time.
I could handle a little magic.
Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#2197 04-14-2004 11:09 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | My mother and her husband lived in New Orleans for 7 years together, he was born and raised there. His family owns one of the historical boat houses that is right along side the Mississippi River. New Orleans would be an awesome place to host this reunion also. My brother and his wife still live there so we would have a contact person to go and scout out motels for us, see if they are dives or somewhere we would stay with our families.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#2198 04-14-2004 12:34 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Hi All
At this point I would like to suggest that the erstaz "comitee" all get together off-board and discuss the options, then get prices, tentative dates and come back with a solution. There's a lot of good places to have this each with it's own merits and disadvantages.
Appreciate everyone's input, needed that so we're not flying blind as far as everyone's wishes and popular consensus.
Probably be a couple of weeks before we get back with a firm plan, some comittee members having computer problems, some out of town.
Thanks for your help. Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#2199 04-15-2004 02:42 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | Hi, as far as airfare, I just talked to Angel Flight, who told me Southwest Airlines will fly people in need, round trip, once a year........something to look into......anyway, it`s good publicity for any of them.......i`m going to look into corporate jets, and Angel Flight, if they come up with any ideas will let me know...........i figure, where there`s a will there`s a way...................Dee | | |
#2200 04-15-2004 03:16 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I have a very dear friend that is the office manager for Angel Flight here in Dallas (Angel Flight Southcentral) and as we develop a list of people needing some assistance, I will gladly get his attention. I think it would be fun to contact someone like American or Southwest to try to hype some PR for them. Let's work on the who, what, when and where stuff and we can send the OCF Army out. I can a feel a plan coming together...there is music (and magic) in the air.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#2201 04-15-2004 03:33 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | | | |
#2202 04-15-2004 05:33 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | When we went to Vegas in September last year we stayed at the Excalibur on the strip, across the street from the Luxor, for $59.00/night.
I would love to have you all come to San Francisco - the most expensive place on earth -not! Hotel room prices here will make you faint. Food's not cheap either.
Southwest has $99 fares all over the place it's the lodging and food costs that drive the costs up.
New Orleans does sound intriging - I've never been there.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2203 08-03-2005 04:23 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | Did anything ever materialize about this "get together"..?
Just curious....
If not, (or even if so), let's plan another...
We would welcome anyone to our resort, but it is about 2.5 hours from the nearest major airports (SFO & OAK)
Either way, it'd be nice to have something to look forward to after treatment, maybe 3 or 4 months out for everyone to have time to plan.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#2204 08-03-2005 08:35 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Michael,
Although I was not a member then, my understanding is that some members met in Las Vegas last November. Not 100% sure when or where.
I would be very interested in getting to meet some members and would welcome a trip as long as there is enough time to block out my schedule.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#2205 08-03-2005 11:36 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | It was in September last year and we had about 20 folks, including caregivers.
Dinah was very instrumental in organizing this and she passed away not very long ago after a long and ferocious fight. She was too ill to attend.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2206 08-03-2005 12:04 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | My gosh how time has flown. We should be well into planning the Second Annual meet! It was a very enjoyable time meeting folks. It was in Vegas and at the Imperial Palace. At the time we kinda thought we would have future get-togethers at other venues so that travel would be an even burden on everyone. Gary had pictures posted for a while Perhaps they are still available?
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#2207 08-28-2005 10:13 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Hi guys, saw this up near the top and thought it was about a new get together. Was at the Imperial Palace last May, half expected to see Danny at the blackjack tables near the dealertainers. Food no better at the buffets though. And the lines no shorter at the front desk.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#2208 08-29-2005 03:21 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Do we have any hearty souls out there that want to start on planning a second reunion? It was a good time last year. We found out the people we were talking to on the board were even better people than anyone could expect.
Hello Bob, Missed seeing your input on the boards.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#2209 08-29-2005 03:30 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | What do you guys want to look for in a location? Big-Busy-Bustling? or Quiet-Laid back-peaceful? What was the agenda for the last one? Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#2210 08-29-2005 03:36 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | As a former pilot who volunteered my time and aircraft to fly doctors and dentists to Mexico etc. to treat the underprivileged, I can tell you that most organizations like Angel Flight etc. are set up to see that patients can get to appropriate treatment and not to reunions. They are on volunteer time and donations just like us. As a rule they have more demand than they can handle. Given that, I think that using their resources to ferry individuals to a reunion for survivors may not get them the type of publicity that they are looking for, or which generates needed donations for their really important work, getting patients to treatment.
As to a location, I would go to the Mendocino coast in a heartbeat. But for those who like the action and shows of a Vegas venue it would seem too
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2211 08-29-2005 03:45 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Brian, I did not see Cherokee Village, Arkansas on your list. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#2212 08-29-2005 04:24 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Hey....I did my time in Arkansas, Ingrid and I were married in Little Rock at a friend's home.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2213 08-29-2005 06:27 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I think that we chose Vegas because it was relatively cheap to fly to and the room prices were very good. There were lots of shows, gambling for those who indulge, Hoover Dam, etc. but also hoards of people, smoking and drinking everywhere.
Hawaii sounds like a plan to me.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2214 08-30-2005 04:43 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | Hey I'm up for Hawaii! The Big Island has lots of variety and weather with plenty to see. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#2215 08-30-2005 06:49 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | I vote for Hawaii.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#2216 08-30-2005 09:36 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | I understand that Pleasant Hawaiian Holidays does group packages also. While we are partial to Maui since we have friends there...with the exception of a couple of the small islands where you really just want to get away from it all and there isn't a lot going on, we would go anywhere.... just as long as there is surf. Hawaii and Oahu have the most
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2217 08-30-2005 10:29 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Brian, I would absolutely LOVE to go....please give more information to us...Thanks, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2218 08-30-2005 10:47 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | I just checked out the PHH site, the prices are very good. Danny Boy, I am with you! Hawaii.....YES!!!!!!!!!!!!!!!!It would be awesome!!!!Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2219 08-30-2005 12:41 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | We would have to get on it since the season starts soon. I've never been to Maui and I have friends there as well. My wife hasn't been to the islands at all. Previously I've been to Oahu and Kauai.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2220 08-30-2005 04:49 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Does anybody want to pick a date so that we can start to make travel plans and assorted arrangements? Gary, do you know when the high season starts, that might be helpful in this process. - Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#2221 08-31-2005 04:13 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Nov 2002 Posts: 274 | 2005-2006 Season Dates Season dates may vary and are subject to change without notice, but generally run as follows:
Regular Season: January 4, 2005 - April 30, 2005
Value Season: May 1, 2005 - June 16, 2005
Mid-Season: June 17, 2005 - August 31, 2005
Value Season: September 1, 2005 - November 18, 2005
Regular Season: November 19, 2005 - November 27, 2005
Value Season: November 28, 2005 - December 16, 2005
Winter Holidays: December 17, 2005 - January 5, 2006
Sheldon,
I found these dates on one of the Hotel sites. It seems fairly close to the dates I used this year when I went to Maui. I arrived on 4/16/05 and that was the start of "value" season.
Glenn | | |
#2222 08-31-2005 12:01 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Thank you for the info, Glenn. Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2223 08-31-2005 01:46 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi, Well, when I originally read Brian's suggestions, I was hoping for the Mendocino coast. Sounded marvelous and I could visit some friends in San Fransico area that I haven't seen in decades. My second and third choices would have been New Orleans (don't think so now) and the Napa valley or even Oregon. I love the beach.
When I mentioned Hawaii to Charlie (he has no desire to go there) he just groaned and said how much is that airfare going to cost? I did check out the website, but do you really think we can get something that cheap in light of the recent disaster with Katrina? I think airfares are about to be out of sight.
Brian - If we are going to do this someplace, what dates do you have open? Another thought. We have Michael and several other patients under treatment currently that might like to attend. We really need to know who is likely to attend and how far, how much money they are willing to spend. Hawaii is pushing it.
Just my thoughts. Not certain I can throw this one together over night like the last time, but wil try if necessary.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#2224 08-31-2005 02:13 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I understand that you can do Maui for 160 bucks round trip if you are willing to fly standby. Hawaii is actually a lot cheaper than you think. $1278 for 2 including hotel for 7 days from LAX or $1310 from SFO.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2225 08-31-2005 02:19 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | No one should plan this around me. My schedule book is so thick with meetings, seminars, screening events, and speaking engagements that it looks like someone painted every page black. Also we have a fund raiser event tentatively scheduled at the home of Blythe Danner in Santa Monica in the middle of December, which would be prime time to go to the islands. Airfares are not cheap anywhere, but if you look at the packages on the site that I recommended, I think you will be hard pressed to find a cheaper round trip to anyplace half as interesting. It was just an idea and from the thread so far seems like a place that people are interested in going to.... Tell Charlie that we are going to fix you up with a young Hawaiian beach boy who is going to see that your umbrella drinks don't run out.......
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2226 08-31-2005 04:27 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi guys, Brian, that sounds like a plan. However, I still have a full time job and am flying in from the east coast as are saxx, minnie and several other people. Eleven hour flights for weekend trips are not my favorite unless I'm going to stay a week or more. I think you should start a new thread and find out who is interested and and when they are available. Considering the current situation with gas prices after the Katrina, no one will be able to afford the air fare for months.
Sounds like fun but I would still prefer California for this one.
Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#2227 08-31-2005 05:03 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | As I have said even when the last get together was planned, this is about all of you, and it isn't really an OCF function per se, but an opportunity to meet in person those that we have come to care about here. It isn't my call where it is held, and if I am available I will make every effort to come to where ever you all decide.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2228 09-01-2005 04:12 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Hey Eileen, I mentioned Hawaii to my husband and he too groaned and asked what the air fare would be. It is sort of a running joke cuz I have always wanted to visit Hawaii and he has always said we cannot afford it....San Francisco sounds great......I don't know....just adding some thoughts. We will be traveling from Baltimore, gas prices are unbelievable right now, don't know how that will affect cost of flights. Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2229 09-01-2005 03:46 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Given the horrible situation in the gulf states, and the tragedy that this is turning out to be, I wanted to say that when I posted earlier that New Orleans was too wet, the extent of this tragedy was not known. I wouldn't want anyone reading this thread sometime in the future to think my comment insensitive or making light of what is truly a disaster of epic proportions.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2230 09-02-2005 12:20 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | It truly is a horrible situation, makes me feel selfish to even think about a pleasure trip anywhere at this point in time. I am praying for those folks, oh my, it is so sad. Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2237 08-29-2005 03:36 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | As a former pilot who volunteered my time and aircraft to fly doctors and dentists to Mexico etc. to treat the underprivileged, I can tell you that most organizations like Angel Flight etc. are set up to see that patients can get to appropriate treatment and not to reunions. They are on volunteer time and donations just like us. As a rule they have more demand than they can handle. Given that, I think that using their resources to ferry individuals to a reunion for survivors may not get them the type of publicity that they are looking for, or which generates needed donations for their really important work, getting patients to treatment.
As to a location, I would go to the Mendocino coast in a heartbeat. But for those who like the action and shows of a Vegas venue it would seem too
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2238 08-29-2005 03:45 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Brian, I did not see Cherokee Village, Arkansas on your list. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#2239 08-29-2005 04:24 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Hey....I did my time in Arkansas, Ingrid and I were married in Little Rock at a friend's home.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2240 08-29-2005 06:27 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I think that we chose Vegas because it was relatively cheap to fly to and the room prices were very good. There were lots of shows, gambling for those who indulge, Hoover Dam, etc. but also hoards of people, smoking and drinking everywhere.
Hawaii sounds like a plan to me.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2241 08-30-2005 04:43 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | Hey I'm up for Hawaii! The Big Island has lots of variety and weather with plenty to see. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#2242 08-30-2005 06:49 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | I vote for Hawaii.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#2243 08-30-2005 09:36 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | I understand that Pleasant Hawaiian Holidays does group packages also. While we are partial to Maui since we have friends there...with the exception of a couple of the small islands where you really just want to get away from it all and there isn't a lot going on, we would go anywhere.... just as long as there is surf. Hawaii and Oahu have the most
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2244 08-30-2005 10:29 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Brian, I would absolutely LOVE to go....please give more information to us...Thanks, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2245 08-30-2005 10:47 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | I just checked out the PHH site, the prices are very good. Danny Boy, I am with you! Hawaii.....YES!!!!!!!!!!!!!!!!It would be awesome!!!!Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2246 08-30-2005 12:41 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | We would have to get on it since the season starts soon. I've never been to Maui and I have friends there as well. My wife hasn't been to the islands at all. Previously I've been to Oahu and Kauai.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2247 08-30-2005 04:49 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Does anybody want to pick a date so that we can start to make travel plans and assorted arrangements? Gary, do you know when the high season starts, that might be helpful in this process. - Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#2248 08-31-2005 04:13 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Nov 2002 Posts: 274 | 2005-2006 Season Dates Season dates may vary and are subject to change without notice, but generally run as follows:
Regular Season: January 4, 2005 - April 30, 2005
Value Season: May 1, 2005 - June 16, 2005
Mid-Season: June 17, 2005 - August 31, 2005
Value Season: September 1, 2005 - November 18, 2005
Regular Season: November 19, 2005 - November 27, 2005
Value Season: November 28, 2005 - December 16, 2005
Winter Holidays: December 17, 2005 - January 5, 2006
Sheldon,
I found these dates on one of the Hotel sites. It seems fairly close to the dates I used this year when I went to Maui. I arrived on 4/16/05 and that was the start of "value" season.
Glenn | | |
#2249 08-31-2005 12:01 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Thank you for the info, Glenn. Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2250 08-31-2005 01:46 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi, Well, when I originally read Brian's suggestions, I was hoping for the Mendocino coast. Sounded marvelous and I could visit some friends in San Fransico area that I haven't seen in decades. My second and third choices would have been New Orleans (don't think so now) and the Napa valley or even Oregon. I love the beach.
When I mentioned Hawaii to Charlie (he has no desire to go there) he just groaned and said how much is that airfare going to cost? I did check out the website, but do you really think we can get something that cheap in light of the recent disaster with Katrina? I think airfares are about to be out of sight.
Brian - If we are going to do this someplace, what dates do you have open? Another thought. We have Michael and several other patients under treatment currently that might like to attend. We really need to know who is likely to attend and how far, how much money they are willing to spend. Hawaii is pushing it.
Just my thoughts. Not certain I can throw this one together over night like the last time, but wil try if necessary.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#2251 08-31-2005 02:13 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I understand that you can do Maui for 160 bucks round trip if you are willing to fly standby. Hawaii is actually a lot cheaper than you think. $1278 for 2 including hotel for 7 days from LAX or $1310 from SFO.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2252 08-31-2005 02:19 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | No one should plan this around me. My schedule book is so thick with meetings, seminars, screening events, and speaking engagements that it looks like someone painted every page black. Also we have a fund raiser event tentatively scheduled at the home of Blythe Danner in Santa Monica in the middle of December, which would be prime time to go to the islands. Airfares are not cheap anywhere, but if you look at the packages on the site that I recommended, I think you will be hard pressed to find a cheaper round trip to anyplace half as interesting. It was just an idea and from the thread so far seems like a place that people are interested in going to.... Tell Charlie that we are going to fix you up with a young Hawaiian beach boy who is going to see that your umbrella drinks don't run out.......
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2253 08-31-2005 04:27 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi guys, Brian, that sounds like a plan. However, I still have a full time job and am flying in from the east coast as are saxx, minnie and several other people. Eleven hour flights for weekend trips are not my favorite unless I'm going to stay a week or more. I think you should start a new thread and find out who is interested and and when they are available. Considering the current situation with gas prices after the Katrina, no one will be able to afford the air fare for months.
Sounds like fun but I would still prefer California for this one.
Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#2254 08-31-2005 05:03 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | As I have said even when the last get together was planned, this is about all of you, and it isn't really an OCF function per se, but an opportunity to meet in person those that we have come to care about here. It isn't my call where it is held, and if I am available I will make every effort to come to where ever you all decide.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2255 09-01-2005 04:12 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Hey Eileen, I mentioned Hawaii to my husband and he too groaned and asked what the air fare would be. It is sort of a running joke cuz I have always wanted to visit Hawaii and he has always said we cannot afford it....San Francisco sounds great......I don't know....just adding some thoughts. We will be traveling from Baltimore, gas prices are unbelievable right now, don't know how that will affect cost of flights. Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#2256 09-01-2005 03:46 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Given the horrible situation in the gulf states, and the tragedy that this is turning out to be, I wanted to say that when I posted earlier that New Orleans was too wet, the extent of this tragedy was not known. I wouldn't want anyone reading this thread sometime in the future to think my comment insensitive or making light of what is truly a disaster of epic proportions.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#2257 09-02-2005 12:20 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | It truly is a horrible situation, makes me feel selfish to even think about a pleasure trip anywhere at this point in time. I am praying for those folks, oh my, it is so sad. Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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