#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) | | OP 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) | | OP 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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