#49639 11-07-2004 05:33 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Everyone,
I wanted to make you all aware of a wonderful thing we have going on here in Virginia. Through this website I met a lady about my age, her name is Hero, whose father had oral cancer last year. He had the same exact surgery I had, same hospital, same wonderful doctors. He came through the surgery fine but developed a staph infection that eventually led to a fatal heart attack one month after the operation. She contacted Brian about using her dance studio to do a benefit for OCF and Brian had her contact me. The event is called "Pappou's Kids" and is November 20th at the Roper Theater in Norfolk. We are garnering the attention of local news and radio stations and hoping for it to be a success.
Pappou is a common name for a grandfather here in the South and that is what most of the kids at the dance studio called Hero's father, his name was Arthur Kotarides. He built this studio for Hero, from the floor tiles to putting up walls, and he was a fixture at the practices always encouraging the kids. He was a surrogate grandfather to many of them.
My daughters and I met Hero last week and the common threads were amazing. Her dad had the same doctors, hospital, surgery. One of her dancers is one of my former cheerleaders. One of her adult dancers and one of the main organizers of the event is a youth ministry leader at my church, she headed up the youth ministry gymnastics team that my daughter Kelly was a member of last year. SOOOOOOO, the ties were startling and it fueled me even more.
After this dance recital is over Brian, myself and anyone who wants to be a part of it will be having a Walk for Oral Cancer the weekend of April 9-10, 2005. That is the same weekend as the National Oral Cancer Screening Day. I WISH IT COULD BE ANOTHER REUNION DATE FOR ALL OF US!!! It would be awesome to have a large group of survivors in attendance. Virginia Beach is an AWESOME place to visit.
I will let you all know how the recital goes and hopefully this will give everyone a model to go from when you start something similar in the state you live in!
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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#49640 11-07-2004 07:43 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Minnie, Way to go, girl! That is wonderful. I just might mention to my husband that we take a little trip for the walk next April. Virginia isn't that far for us and I have a friend in West Virginia that I need to visit anyway. Could kill 2 birds with one stone. Good luck with the recital. I hope it is stupendous!  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#49641 11-07-2004 09:56 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Minnie-
Count me in! My husband and I won't be cruising after this last one in December with the girls until after we move and get established in Florida. He plugged the dates into his calendar and I will be there! Might even bring some of my supporters from Kansas with me, namely my sister, but will mention it to my Dr at KU Med and see if we get something going for the Kansas City area in the future. I am SO looking forward to finally meeting you. That will be right at our 2 year mark!
Sincerely,
Lisa
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#49642 11-07-2004 10:11 AM | Joined: Oct 2004 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2004 Posts: 34 | Hello, My husband Bob & I do not post on this site too often, but have found it helpful. Minnie, we just read your posting & we plan on being there for the walk. We have friends in Virginia Beach that we can stay with. I can't express to you how much your posting the idea of a walk meant to us. When I told Bob about the walk, tears came to his eyes & he said "We're going!" He is one month out of radiation, but not back to work yet. Lately, we have been feeling like we are just now catching our breaths! Please keep going with the idea of the walk!
Dx June 18, 2004, neck dissection July 1, 35 radiation txs Aug 18-Oct 7.
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#49643 11-08-2004 04:25 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, that is awesome!!! Count me in for the April 2005 walk (God willing)...Love ya! 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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#49644 11-08-2004 06:34 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Wow, now I'm even more excited about the walk, if that's possible. It would be so wonderful to have a large group of us there to spread the word about our disease. There is POWER in numbers and voices raised as one are heard around the world. Putting many faces on this cancer is the most insulting thing we can do to it and by lending our faces and stories we are saving lives. Can't ask for much more then that after what we've all been through.
Anyone got any new, exciting ideas for our Walk??? If you can't get to Virginia, how about hosting one in your own neck of the woods on the same weekend?? I will gladly help from a distance. I've never met Brian yet his presence is well known with the benefit we are doing the 20th of this month, he's been an enormous help to us.
Let's leave our mark on this world people, who knows, maybe it's our destiny.
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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#49645 12-24-2004 12:33 PM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | Hi Minnie,
My name is Rosalie. I was diagnosed with Oral Cancer in October 2002 and Thyroid Cancer in January 2003. I had 30 percent of my tongue removed.
I have spoken to Brian about the walk you are doing because I am also interested in doing a walk in Philadelphia. After reading your story I am now thinking maybe I should come to Virginia Beach and also do a walk in Philadelphia. It would be great if we can do these walks a couple times a year and help raise money to find a cure and an awareness for Oral Cancer. How are you getting this walk together. I would like to know how I can organize a walk for Oral Cancer in Phila. I found it so inspiring to read what you are planning to do.
Please reply.
Rosalie Stern Oral Cancer survivor never staged | | |
#49646 12-28-2004 05:01 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Rosalie,
I'm sorry it's taken me so long to reply, it's been a busy month in my household.
The walk I am working on is taking shape quite nicely, I'm excited. The Eastern Virginia Medical School has taken an interest in the walk and will be offering it's media sources/assistance. Doctors are lined up already to do free oral screenings. I am 99% sure that I have my first "big" sponsor, a very wealthy local man that my husband met who is a cancer survivor. Brian is guiding me with everything so it's bound to be a success. Lot's of OCF members want to come so I'm hoping it will also serve as a sequel to the Las Vegas trip that I missed.
With Christmas over I can get back to focusing on this event and I'll keep everyone posted.
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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#49647 12-29-2004 05:24 AM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | HiMinnie,
The events you planned sound so exciting. Please tell me how you organized the walk. I was treated at University of Pennsylvania Hospital. There is a support group there, which I have never been to any of the meetings. I was thinking of talking to the group about organizing a walk. I'm not sure about where to begin. I can also talk to my doc about it. Do you have any suggestions.
Also, can you name a couple of hotels in Virginia Beach that I can call to make reservations for the walk. I really want to be there.
Rosalie | | |
#49648 12-29-2004 06:21 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 | Rosalie,
I was/am also being treated at HUP. I didn't know Penn had a support group. The only group I am aware of that meets there is SPOHNC which meets in Penn Tower at some ridiculous time like 9:30 am on Weds. Guess they don't think cancer survivors work.
Minnie,
That's too far in advance for me to commit to now. When you give hotels, tell me which ones are beach front. How amy hours drive in VA Beach from mid NJ?
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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#49649 12-29-2004 09:32 AM | Joined: Mar 2004 Posts: 117 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 117 | Minnie,
I just put your Oral Cancer walk in my schedule for April. I've never been to Virginia Beach but I'm looking firward to it.
Barb
SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
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#49650 12-29-2004 12:49 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Everyone, Barb, it will be great to have you here and a part of the event! Eileen, it takes me about 6 hours to get to Atlantic City where we go yearly for a competition. I would love to see you here. You can find all of the motels at the oceanfront online, there are tons of them. I can try to work some group rates if others are interested. Rosalie, I suggest talking to your doctor, especially if it is at a large medical center. The hospitals like the positive publicity and may help you get the ball rolling. I have secured the location of the walk, it will be at Chespapeake City Park (here is the link) http://www.chesapeake.va.us/services/depart/park-rec/citypark.shtml and will be on April 9th, 2005. This is National Oral Cancer Screening day. My doctors office will be on hand to provide free oral screenings. We will have food vendors, have tshirt sales, and any other creative things we can think of to earn money for the foundation. The park is the location of the Cancer Societys annual Relay for Life so there is already a route for us that is one mile long. Participants can walk it as many times as they like. I am going to send out informational flyers to all the local dentist offices, ENT offices, etc., asking them to form teams for this event. With Eastern Virginia Medical Schools publicity office involved, we will get coverage on this so I'm hoping that will lure in the local medical and dental practices. I am also going to play up the participation of my local Cheerleading world, with the kids involved the public will love seeing it. The kids will also get alot out of helping such a great cause. I would love for the OCF board members that will be attending to form a team for the walk, obtain sponsors from where you live and walk as a team while here. I have asked Daniel Bogan to be our team captain and hope he will accept. We are a team on here day to day, let's join in person and do some good getting our important message out. I need good ideas for Tshirts, name for the event, etc. HELP!! Take care, 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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#49651 12-30-2004 10:51 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, it is sooo exciting, I cannot wait to get my sponsors, etc....this is going to be something!!! Thanks so much!!!If there is anything I can do here in Baltimore, please, let me know!!! Love, Carol Phil. 4:13
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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#49652 01-01-2005 07:54 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I think we will call this event:
1st Annual "Voice of Hope" Walk-A-Thon........
Let me know what everyone thinks.
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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#49653 01-02-2005 03:50 AM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Minnie, I second the nomination.....Could not be better. All in favor, say aye....  Peace Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
#49654 01-02-2005 10:18 AM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | Dear Eilene,
I never went to the support group at Penn, because of the time too. Who is your doc at Penn? I see Dr. Chalian. I was diagnosed in Oct. 2002 and I also had a neck disection. I wasn't staged but I had 30 percent of my tongue removed. Oral Cancer was not found in my lymp nodes instead I was diagnosed with Thyroid Cancer Stage 4 and then I had a total thyroidectomy in January 2003. What brought you to Penn? Do you live near the Jersey Shore. It is quite a distance. I live about a half hour from Penn when there is little traffic.
please write back.
Rosalie | | |
#49655 01-02-2005 10:22 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Sounds awesome, Minnie!!!Love, 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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#49656 01-02-2005 02:23 PM | Joined: Oct 2004 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2004 Posts: 34 | Minnie,
The walk will certainly become a "Voice of Hope" for everyone affected by this disease. Thank you already for your energy, time & creativity. We cannot wait to meet everyone on this site!
Bob & Laurie
Dx June 18, 2004, neck dissection July 1, 35 radiation txs Aug 18-Oct 7.
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#49657 01-04-2005 03:39 AM | Joined: Jan 2005 Posts: 94 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2005 Posts: 94 | "Voice of Hope" -- I like it!
Ken
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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#49658 01-04-2005 08:22 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 | Hi Rosalie,
I am originally from a small lake outside of Glassboro NJ so everyone in my family always went to HUP for surgery. My mom worked there as a secretary for head of dept of Pharmacology and my sister gradutated from Penn with a degree in PT. She also worked there as director of Seahouse House and later as Head of PT, OT and Speech for CHOP. I now live in Trenton so HUP is about 35 min as long as I leave after 9:00 am., about 2 hours if I leave before then. I'm suppsoed to be down there tomorrow for a CT scan, but not certain I will make it with the weather forecast.
My first neck dissection was done at a hospital in Trenton and when that dr couldn't locate the primary, I went to Penn for a second opinion and have been there ever since. While we are not allowed to mention drs names on this board, the surgeon who di my total larygectomy and left neck dissection is the same as yours. Only reason I didn't go to HUP the first time was 'I wanted this lump out now' and wasn't willing to waste the time to go elsewhere. I was SCARED. Also local dr experienced in doing this type of surgery.
Where in PA are you from?
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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#49659 01-04-2005 02:41 PM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | Hi Eileen,
I didn't know that we are not allowed to mention Dr.'s names. I have an appointment on Thursday 8:00. What day is your appt. I do not understand the months and dates on the web site.
I really like my doc now, it was difficult for me when I was first diagnosed to trust a doctor because I was so misdiagnosed by many doc's at Penn. It took 5 months for me to get a diagnosis because not one doc wanted to do a biopsy. I had 30 percent of my tongue removed. My doctor truly saved my life.
What was your story? If you feel like sharing I would like to hear it.
I live in Elkins Park, Pa. (Montgomery County)
Rosalie | | |
#49660 01-06-2005 12:56 PM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | HiMinniea,
I would love to help you with the Oral Cancer Walk. I can help you with making phone calls etc.
I would like to make it easier for you so please let me help. Why don't you think about it and let me know what I can do. I would like to be a team player.
Rosalie | | |
#49661 01-07-2005 07:12 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hey Minnie, I would like to help out too, let me know...Love, 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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