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#72121 03-30-2008 04:13 AM
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A few weeks ago I got a surprised e mail from Ginny that used to post under MikeG. She was the CG for her husband Mike. He was one month behind me, just like Stoj. We traded some e mails and phone calls and to make a long story short, she and Mike and 2 traveling friends made their way to Gulfport and we had lunch at my wife's restaurant and it was just great to hug (not Mike now) and talk face to face. After 5 minutes I felt as if I had known them forever. They spent the day in beautiful Gulfport, took some pictures which she just sent me and I just wish I could spend some quality time with all of you that contribute to the value of this website.

That was cool.


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.
davidcpa #72124 03-30-2008 05:18 AM
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I agree David...it would be wonderful to talk face to face with all of our CC buddies.

Glad to know you had a good meeting with Ginny and Mike...a little mini-affirmation of life.

Even better to have a good restaurant to go to...kudos to your wife.

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
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David,

I know that wonderful feeling as I hooked up with a member (Tizz)in Sydney, Australia a year ago Feb.

Last year at the NYC walk, I met Joanne and her husband Jack. The year before it was Sheldon and his wife. And this year, I will finally get some face to face time with Brian.

Every so often there is talk of having another OCF get together like the one in Las Vegas, which I think was in 2004 or maybe a year before that. It would be a great thing if it could happen again.

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"
wilckdds #72242 04-01-2008 10:01 AM
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Sounds like time for another OCF get together. We haven't had one since Las Vegas in 2004 that I know of.

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
Uptown #72250 04-01-2008 11:57 AM
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David:

How nice that you got to meet some OCF members in person. Oral cancer is best understood by someone who has gone thru it. I would one day love to meet some OCF members. Hopefully at next years walk.



Christine
SCC 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 smile
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I have always said I wouldlove to meet people ..and I would be more then Willing to arrange a GATHERING if you would call it .. I had said that before . I just need suggestions on locations and times of year and who may be interested in attending so when I am calling around trying to BOOK things I have a rough estimate !!

Shar


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
sharlee #72521 04-06-2008 08:12 AM
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We picked Vegas because of reasonable hotel rates, food, airfare and lots of things to do - gambling, shows, sightseeing, Hoover Dam, shooting machine guns, pistols, etc. The tricky part is finding a time of year when the conventions in Vegas are at a minimum.

Jetagehobo is the only member left still living who was on the original planning committee. Dinah was too ill to attend (and subsequently passed away) and Danny Boy passed away 2 years ago.

Honestly, it was a double edged sword. It was great puting names and family members faces to it but, on the darker other side, it made it a lot more up close and personal when they died. It had a pretty profound effect on Brian and I. I would probably attend, as, I am sure, would Brian, although not without some trepidation. There is a lot to be said about the anonymity of cyberspace.

Danny Boy had also painstakingly put a LOT of work into an album of both survivors (who couldn't be there) and deceased members. It has been "lost" and we would sure like it back. It was a very profund moment seeing all of the beautiful people who lost the battle with the disease. For me and many others, it was one of the most moving parts of being 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)
Gary #72528 04-06-2008 01:50 PM
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Travelled Asia and Europe but have never been to the United States or Canada.
Have always wanted to see Las Vegas and if I could fit it in with annual leave from work and family commitments (elderly parents) and of course finances permitting I would consider attending. Even though I do not post too often lately I have been checking in daily for the latest postings. Am of course in touch with AussieH, Tizz and 2 others in Australia but would love to meet some of the people that I feel I have gotten to know through the forum. Feel it would be beneficial to share some of our experiences personally.
Regards
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #72614 04-07-2008 05:44 PM
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Well I am game to start checking it out and working on things .. I did a, small in comparission I am sure, Powerpoint presentation for an Oral cancer awareness booth that I did...with whomever gave me the info .. BUT I would gladly put together a BIGGER one with everyone .... What would you say we figure atleast a year away ....and any specific month or time of year ?


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
sharlee #72615 04-07-2008 05:50 PM
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Would this be a bring your whole family or just the patient and caregiver? Sounds really great and we would like to participate if it works out.

Thanks for offering to put it together. In my other life I was a pretty good event coordinator and trade show worker and power point person so if you need some help don't hesitate to ask.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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A double dare,
Why not have it here in New Orleans. We need all the tourist trade we can get and there are all sorts of attractions here - food, historical sites, food, casinos, food, golf, food, antiques, food, music, food, art, food, world class zoo, food,etc.etc.
There is great interest in the local medical community in rebuilding the regional care system. We can contribute by having an event focusing on awareness and possibly a screening. This is of great interest to me and I am willing to take on planning such an event.
I have also been involved in event planning and fund raising and could help with logistics and planning.
When I have a chance, I will check the calenfdar and w. the NO Tourist and Convention info center for possible dates.

Malka

Last edited by Malka; 04-08-2008 03:25 AM.

SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Malka #72624 04-08-2008 04:37 AM
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New Orleans sounds great to me. I've done Vegas LOTS of times and it's fun, but it is very COMMERCIALIZED. NO is definately more personalbe and and much more character and the food is WAY better.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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I've never been to New Orleans but have heard that it's amazing. I hope if this comes about Neil and I can come.
Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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The first one was a family affair.


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)
Gary #72647 04-08-2008 12:18 PM
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I'd love to see New Orleans but please not during the summer or hurricane season. And New Orleans has gambling also so we get all the good food, atmosphere, history in addition to gambling.

The first one was husbands and wives and Danny Boy brought his kids who were in their late teens or early twenties. We met for breakfast and dinner and were on our own the rest of the time. I think there were only about twenty some of us.

As to benefit, my husband came home a changed man. It was like somone had lifted a burden off his shoulders. I obviously had NO clue how much my having had cancer, not once but twice had affected him. There were no support groups when I did this so we were very much on our own. I don't know how much talking the 'guy' caregivers did, but they just seemed to absorb strength from each other in the realization that they were not alone in their feelings and fears. Brian had brought the Lance Armstrong yellow bracelets for everyone and my husband put one on and hasn't taken off since then. It was like a badge of honor. A couple of weeks ago, he had a procedure at the hospital and when I cut off the hospital bracelet, I accidentally cut off the yellow armstrong bracelet. He was so disappointed, it was like I had cut off his right arm. Fortunately I had another so it is back on his wrist performing whatever magic it does.

It was also great meeting people and as Gary has pointed out, somewhat sad because we lost so many that year. Would be fun if this comes to fruition. It really needs someone who had the time and knows the town where it will be held. I think that is what made it happen last time.

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
Eileen #72652 04-08-2008 01:43 PM
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I'll throw St Pete Beach into the equation. Less costly than Clearwater Beach and just as good but more convenient to other destinations like St Petersburg, Tampa, Busch Gardens, Disney World, Ft Desoto Park. The water and weather are still warm well into late October and even though Hurricane season lasts until November 1, October is a very safe month. In fact this area hasn't been hit for many many years.


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.
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I am willing to look into wherever...I can check it all out and throw out some numbers and dates... are you talking maybe this Oct ?? Or a year ..Just out of curiosity ...

I think it is a personal choice on who comes with you .. In my opinion it would be anyone with interest in this ..


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
sharlee #72663 04-08-2008 04:38 PM
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St. Pete is nice too. I think we would pretty much go anywhere, but if I voted my first choice would be New Orleans. I think we'd just leave the kids - otherwise we wouldn't be as relaxed.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

sharlee #72673 04-08-2008 06:18 PM
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I missed out on the reunion in Vegas and I still regret it. Being on the board for almost five years now, I know there are lots of survivors in my neck of the woods, meaning the eastern United States. How about Virginia Beach for a location? It's beautiful in October and the history here is amazing. It's not a bad drive from Florida or from up New York way.

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.
minniea #72677 04-08-2008 08:51 PM
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If October, please the last week. We have almost a month of Jewish holidays and I have a niece getting married. The weather here is also beautiful then.

Michelle, contray to media New Orleans is a great family city. We have one of the best zoos in the country in beautiful Audubon Park, an aquarium, Children's Museum, riverboat rides, World War II Museum, swamp tours. Also, there is much to do here and in the region that is very relaxing and also inexpensive.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Malka #72719 04-09-2008 11:47 AM
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My first choice would also be New Orleans. I think October is still too hurricane risky for anything on the east coast. How's the weath in Nov, Dec, and Jan?

Malka, why don't you find out what the off season dates are in New Orleans and the possible hotel rates so planners have a starting point to compare to other locations.

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
Eileen #72723 04-09-2008 12:15 PM
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Eileen,

St Petersburg is on the west coast.


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.
davidcpa #72728 04-09-2008 12:25 PM
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SOOOOOOOO. You gonna tell me you don't get hurricanes on the west coast of Florida? If we go to a west coast, I would prefer the REAL west coast on the Pacific. Florida is not one of MY favorite spots. Wouldn't you like to go somewhere else for a change?

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
Eileen #72731 04-09-2008 12:42 PM
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The St Pete area hasn't had a hurricane come ashore in probably 25 years or so, maybe longer. For some good reason they seem to go above us or through the keys and up towards La or Tx. I have been here since 1986 and I haven't experienced a hurricane force wind yet.


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.
Malka #72736 04-09-2008 01:47 PM
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I will check into New Orleans and Florida anc Virginia, and I will check for the End of Oct . Any other suggestions ?


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
sharlee #72737 04-09-2008 01:50 PM
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OH and I can check Vegas and I was also thinking Chicago for some reason . I stopped there once on a train trip I was taking and I loved it . I dont think there are any Hurricanes there !!


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
sharlee #72756 04-09-2008 04:48 PM
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The best weather here is September - October and April - May. the worst months are August, hot, close to 100% humidity and no air moving and January, usually cold and rainy. There really is no off season. Mardi Gras and Jazzfest time are the big time events here. Also to be avoided unless you are interested are several special events which pretty much tie up the hotels and attractions. They are "Southern Decadence" - a festival of alternate lifestyles on Labor Day weekend, Essence Festival around the 4th of July, and several of the big football weekends.

As far as general weather conditions and travel - no where is good these days. A mountain goat falls off a cliff in Greece and air traffic is affected in Denver. And of course, we all know that the airlines blame everything on bad weather in Denver.

Re: some of the other places mentioned. Chicago is great. We used to go there in late May/ early June for CES convention and it was nice. Virginia and the Carolinas are also very attractive.
We used to go to Las Vegas in January for the CES show and I realy did not like it at all. I found it to be even more artificial than Disney and not at all a relaxing or interesting place to visit.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Eileen #72771 04-09-2008 06:34 PM
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I've been to New Orleans, my brother and his wife have lived there for nine years now. I liked seeing all the old graveyards, but other than that the parts I saw were run down and kind of dirty. Please don't take offense to that. I know there are beautiful parts but if I bring all my girls down there, I don't want them seeing men dressed as women nor grown men taking a whiz on the side of a building in broad daylight!

If it's in NO, let's make sure it's in a nice part.

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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