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Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Ms. Danner,

When I reached a point that I felt like a weak, puny, crybaby, I stumbled across the Oral Cancer Foundation. What I found here was a very special collection of people that were willing to literally hold my hand and walk me down the path that many had already traveled ahead of me. I have shared some happy moments and I have shed many a tear for my friends here. A truly amazing thing I have witnessed is what I will refer to as a "passing of the torch" to light the way for the new members. You will always recognize them by their shy posts, their feelings of dispair and barely holding on to any hope for tomorrow. The are quickly brought into the fold and delivered through their treatment - and soon become contributors to the next round of individuals needing help.

Thank you from my heart for helping allow this miracle of miracles to happen. Without people like you and especially Brian Hill, many of may not have made it this far!

God bless you for all you do, and may your rewards be great for changing my life in a very positive way.

Ed Brown


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
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Dear Ms. Danner,

Three years ago at age 46 I was diagnosed with tongue cancer and then almost simultaneously with breast cancer. I live in a small city in Upstate NY that had great resources and support in place for women undergoing treatment for breast cancer, but no support at all for patients with oral cancer, although that was the more serious of my two cancers. Also, my cancer went undiagnosed by a dentist for about 8 months first because I didn't fit the "profile" of an oral cancer patient.

Without this site, I don't know how I would have gotten through my treatment or dealing with the many lasting effects I have had from treatment. I read here regularly to try to help others when I can with my experience. I am also keenly aware how much improvement there needs to be in early diagnosis of oral cancer, and how much OCF contributes to that effort.

Thank you for your support of this forum and of OCF.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Jan 2007
Posts: 735
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jan 2007
Posts: 735
Dear Ms Danner,

Thank you so much for your donation to the OCF. This new forum software is wonderful. I don't know if people who don't belong to this group can truly comprehend what this site does for people.

I am a 36 year old Mom of 5 in NY, and I was diagnosed last Jan. This site has been a lifeline to me in many ways. It has educated me, supported (the friends here) me, helped me through many sleepless nights, allowed me to meet some of the most wonderful people from all over the world, and let me know I wasn't alone - no matter how many times I felt that way.

As Minnie stated and I am sure you know all too well yourself, cancer is a family affair. Well, I now feel as though I have 2 families ..My one at home (all everywhere else they live) and my OCF family ... That is what they are to me now. I couldn't do this with out them ...still. And I now feel the need to be there for others as well. This site and these people are what got me through 2007...and hopefully MANY, MANY, more years to come.

So from the bottom of my heart, I thank you for all you do for the Oral Cancer cause. I hope that someday it will be more recognized.

Thankfully Yours
Sharlee Ringer


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
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Dear Ms Danner, You have helped me keep my family on here intact as I lost my family of the last 5yrs owing to OC. I try to visit this site a few times a day just to see all the updates and new members. I might be going through a recurrence, and the people here give me the boost I need to go through whatever it is for the 2nd time around. The pain is almost unbearable and I need these people and this site to keep me motivated to keep fighting to beat this disease the 2nd time. Thank you for your generous donation and thoughtfulness. I hope you have a long and happy life. Your fan forever, EzJim


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #66340 12-29-2007 05:26 AM
Joined: Feb 2004
Posts: 598
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Feb 2004
Posts: 598
Ms. Danner --

Your generosity is greatly appreciated, as it helps provide comfort and information for those affected by this disease, as well as visibility for the disease itself. That visibility is key to attracting the research dollars necessary to ultimately defeat Head & Neck cancer.

I am 52, and am presently cancer free, after a rigorous treatment regimen this spring and summer. Besides the excellent facilities and physicians at the Arthur C. James Cancer Hospital here in Columbus, my recovery is due in no small part to the support and information I received on this site. This is a wonderful, dynamic and caring community, and your donation has served to make those benefits even more visible and accesssible. Thanks again!


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
Joined: Sep 2006
Posts: 493
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Sep 2006
Posts: 493
Ms. Danner,

Thank you so much for your kindness and helping. I like many others around here; hit this site every day. The OCF forums help so much with the practical side of dealing with cancer and it lessened many of the burdens brought on by treatment and recovery. It also provides help with my daily demons and not letting cancer define me or who I am. The survivors and caregivers I met through here have saved my sanity/life.

Sincerely
Tim Stojakovich


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
Joined: Apr 2007
Posts: 93
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2007
Posts: 93
Dear Ms. Danner,

Thanks so much for your generous donation the the OFC. The wealth of knowledge and support on this site is priceless. I lost my sister to oral cancer in August. Had I and she known about this site when she was first diagnosed, perhaps she would still be here today. She opted for the less aggressive procedures (against her surgeon's advice), thinking that most doctors were too aggressive, leaving their patients with life altering effects to deal with for the balance of their lives. Since her cancer was discovered in the early stages, she probably would have been a survivor. We obviously had no idea that this cancer was so aggressive and insiduous to treat.
Your generousity will save lives and is appreciated by members of this site.

Thank you for your kindness,

Nancy


Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
Joined: Jun 2007
Posts: 718
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jun 2007
Posts: 718
Dear Ms. Danner,

Brian Hill shared with us the generous support you have provided in making this new message board a reality.

For many of us who are caregivers or patients, coming to this board has become a daily part of our routine and it offers us a huge amount of comfort.

I'm sure I am not alone in that I have been blessed with many nice gestures and offers of support from family and friends. But, unless someone has gone through the horrors of oral cancer treatments, there are very few people who can relate to the toll this takes on the patient, the caregiver, and in cases like mine...the children.

Through this board, we support each other. We rant, we rave, we ask/offer advice and we celebrate in each other's successes. We also hold dear in our thoughts those who are suffering and we grieve for the friends we have lost.

I do not know how I would have survived this summer without all of the wonderful OCF friends (whom I have never met in person) offering me encouragement and advice.

Brian, is always working to accomplish bigger and better things in the area of OC awareness and education. He is on a constant and focused mission to increase awareness and offer those of us who are new to the world of oral cancer the best information available. I have an amazing amount of respect for him. As far as his advocacy work, he is able to do more in a month than most people can accomplish in a lifetime. With the help of people like you, he and OCF will make a difference.

Sadly, for some of us, the lack of work for the patient and caregiver along with mounting medical bills has caused great financial devastation within our families. Many of us are in a rebuilding process with very little extras to contribute to this amazing site. We are thankful that people like you care enough to help ease the burden in others lives.

I'm sorry that this awful disease took your husband during the prime of his life. But I admire you for collaborating with Brian to help raise the awareness of OC, and to help support the people who are in great need of an understanding and compassionate audience.

Just today, there was an announcement on these boards of a young woman who lost her life to OC due largely to a long period of misdiagnoses. My husband went nearly 2 years before he was properly diagnosed, and by the time he was disagnosed his cancer had evolved to Stage 4. It doesn't have to be this way.

I have much gratitude and appreciation to you for your involvement.

Kindest regards,


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
mhupe #66531 12-31-2007 12:39 PM
Joined: Jun 2007
Posts: 221
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Jun 2007
Posts: 221
Dear Ms. Danner,

Thank you so much for your generous contribution to the OCF to give us a wonderful new message board.

When my father was diagnosed with oral cancer back in March of this year I felt so alone as no one I spoke with truly understood what I was feeling or what the future would be like for him. I found the forum in June after his surgery and the people here have shared with me their personal experiences which I have been able to pass along to him. I have a better understanding of what lies ahead and can use that to help him.

My fathers cancer has returned already, and I can't imagine facing a second round of it without the support of the people here. I know that no matter where this journey takes us, that I am not alone, and that I have a safe place to talk about what's going on with him 24 hours a day, seven days a week.

Thank you again for your generosity. It is very much appreciated.

Sincerely,

Joy P.


CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
Joined: Apr 2005
Posts: 2,676
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Dear Ms. Danner,
Thank you so much for caring about The Oral Cancer Foundation.
I found the OCF [by "googling"] in Jan 2005, a few days after my husband was diagnosed with SCC. I have been on the site almost daily since then - through his battle with the disease, and his loss to it. Without the support on the forum, I know that I could not have been the caregiver my husband deserved. It is my intention to continue to support OCF now that he is gone by continuing on the board to help others, and financially when I can. Your contribution and personal assistance will take this Foundation to a new level of being able to help people conquer this disease.

Amy Myren


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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