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July 29, 2009

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July 29, 2009

My beautiful young daughter (age 43) fought and finally succumbed to this dreadful oral cancer. Throughout our 2-1/2 year ordeal of surgeries, chemo's & radiations I sought advice and comfort at the Oral Cancer Foundation site. I don't know how I would have made it without the wonderful people who answered my ever question & guided me through the long terrible days and nights. I am now honored to offer my help and support to those who continue to fight the valiant fight against this horrible nightmare of a disease with my experiences. The Oral Cancer Foundation is a multitude of angels waiting here on the internet to hold your hand!

The Great!

I've personally experienced the results of this organization in...

providing unending support to those going through cancer

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What I've enjoyed the most about my experience with this nonprofit is...

the online friends made and the heartfelt support

If this organization had 10 million bucks, it could...

help in the research toward finding a cure for oral cancer

When was your last experience with this nonprofit?

2008

July 29, 2009

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July 29, 2009

I found the Oral Cancer Foundation website after I had been diagnosed with tonsil cancer. I had just had a preliminary visit with a radiation oncologist. When I saw him, I really knew nothing about the disease and its treatment. By the following week, when I had a preliminary consultation with the medical oncologist, I had learned a great deal about the the disease and treatment protocols. I was able to ask intelligent questions and could make an informed decision about ;the drug to be used in the clinical trial I enrolled in.

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What I've enjoyed the most about my experience with this nonprofit is...

the access to current medical knowledge about oral cancer and the vast searchable comments and questions from other oral cancer patients.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

When I come to the Oral Cancer Foundation, I was scare, confused and had so many questions. The people at this site helped me so much, They told me the truth and let me know what to expect, they put my mind at ease and helped me get thur it. I looked around before coming here and found this site had the most complete information, that was easy to find and understand. 67 year old female, Oral cancer, in chin and gum area. 39 Radiation and 8 Chemo treaments.

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What I've enjoyed the most about my experience with this nonprofit is...

the people and the way they let you know that it will get better.

The kinds of staff and volunteers that I met were...

very helpful, alway told the truth. This was very inportent to me, because, The doctors was not telling me all and it was causeing me to worry. I can deal better if I know what I'm dealing with.

If this organization had 10 million bucks, it could...

grow and help more people.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

CANCER! What a horrible word. Although I was surrounded by a caring loving husband and family, I felt all alone. I had been diagnosed with tonsil cancer. Following 7 weeks of radiation, with one day each week of chemo, my treatments were complete. I was left with fear, doubt, and questions concerning my type cancer. This was all new to me. Then, thankfully, I discovered the Oral Cancer Foundation web site. How wonderful to know there was a place to go where you actually could correspond with others who had been through practically everything you had in dealing with the disease, but also dealing with the treatment and after effects. It is a privilege to know others have experienced mostly the same things I have, and at least I feel NOT ALONE. GOD BLESS everyone who is part of this wonderful site and I hope it continues forever! Julieann

The Great!

I've personally experienced the results of this organization in...

helping me cope with the many questions I had concerning my treatment side effects

Ways to make it better...

If I had to make changes to this organization, I would...

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What I've enjoyed the most about my experience with this nonprofit is...

Hearing and learning that I AM NOT ALONE

The kinds of staff and volunteers that I met were...

So very informative

If this organization had 10 million bucks, it could...

Keep helping others "forever."

Ways to make it better...

Maybe give more instructions on how to input information for those, like me, who are computer illiterate :(

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

My first bout with cancer was 2004, then 2005/2006 I found Oral Cancer Foundation in April of 2006. I was so thankful for this site. It helped me to understand what I had been through, & learn more of what was to come. If it was not for OCF I would be scared to death!! Instead I am well informed and supported by others. I also have the chance to give back to others as well. I encourage anyone with Oral Cancer to contact OCF for good information and support. I am proud to be a Member of OCF.

Ways to make it better...

If I had to make changes to this organization, I would...

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The support of everyone.

The kinds of staff and volunteers that I met were...

Have not met, but have heard from.

If this organization had 10 million bucks, it could...

Reach out much farther !! Help many more cancer patients!! Also more research.

Ways to make it better...

I had found this organization sooner. I would have learned about my cancer and what to expect.

One thing I'd also say is that...

OCF is the Best and deserves the 10 million!!

When was your last experience with this nonprofit?

2009

July 28, 2009

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July 28, 2009

This was such a helpful site for me to find out in a nonthreatining way what I was facing after my diagnosis. I didn't have all the symptoms but when they did arrive, I knew what to expect and they let me realize that there was light at the end of this long, dark tunnel. It's great to know that you are not alone in this fight and that others have gone before you and survived and are willing to share their pain and triumphs with everyone.

The Great!

I've personally experienced the results of this organization in...

the awareness generated for this disease and the "handholding" that they give to all who are afflicted with it.

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If this organization had 10 million bucks, it could...

spread the word to more people with this disease.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I found the Oral Cancer Foundation to be the most valuable source of information. Information is current and factual. Far more so than traditional patient referred informational sites. Such as cancer.gov, cdc, webmd, medline, ect. Information obtained from The Oral Cancer Foundation allowed a partnership to develop with our treating physcians. Mutual trust developed when the physicians acknowledged and respected our information sources. We were allowed to be part of the decision making process. Knowing the pros and cons of each step and direction of possible treatment is ultimately the responsibility of the patient. We experienced a positive outcome and cancer free now for 4 years.

The Great!

I've personally experienced the results of this organization in...

the continued research of why oral cancer is increasing in numbers while smoking is decreasing.

Ways to make it better...

If I had to make changes to this organization, I would...

be very proud.

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What I've enjoyed the most about my experience with this nonprofit is...

my husband survived and has flourished after being treated for oral cancer.

The kinds of staff and volunteers that I met were...

Professional, informative, nonjudgmental, factual, supportive.

If this organization had 10 million bucks, it could...

cut oral cancer deaths by an astounding amount.

Ways to make it better...

I found the Oral Cancer Foundation site on day one of diagnosis and not a second later.

In my opinion, the biggest challenges facing this organization are...

Getting additional PR exposure.

One thing I'd also say is that...

The Oral Cancer Foundation is invaluable.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I found this web site after my 34 y.o. husband was diagnosed with Stage 4 oral cancer. Thank God, he survived. The web site provided me with a trustworthy resource for accurate, helpful information. Even more importantly, they provided me with an opportunity to reach out to spouses, patients and survivors with my questions and my fears. Oral cancer has many cancer-specific problems and questions that general cancer websites could not address. I am incredibly grateful they were there when I needed them.

The Great!

I've personally experienced the results of this organization in...

my interaction with other website visitors and forum members

Ways to make it better...

If I had to make changes to this organization, I would...

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

They helped me to have the strength I needed to help my husband recover. I also make sure my Amazon purchases are linked back to their website.

If this organization had 10 million bucks, it could...

Make the unknown risk factors more publicized. Oral cancer is one of the few cancers growing in numbers but without significant advances in treatment. The outcome, even if the patient survives, can severely affect quality of life.

Ways to make it better...

Long time forum members had not been critical of some comments that were made by visitors.

In my opinion, the biggest challenges facing this organization are...

Mostly, public awareness. People who are young and never smoked or chewed tobacco can still be victims of this potentially disfiguring and life-changing disease

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I was this site while I was fighting Oral Cancer. This is the place to go for answers from people who have had a similiar battle. The insight is very valuable and helps prepare an individual for the many questions that come up related to treatments, after effects, what to do/not to do and on & on. Great site with wonderful and caring people.

The Great!

I've personally experienced the results of this organization in...

my personal battle with cancer and the help I received. Also I see veryday the people who would be lost without this site.

Ways to make it better...

If I had to make changes to this organization, I would...

Hopefully find a waty to get more funding to enable the OFC to grow and help more people and help in early detection of Oral Cancer

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

This site is all about helping people with Oral Cancer..... no politics , no preaching, no begging for money. The OCF is about helping people period

The kinds of staff and volunteers that I met were...

Smart, Caring, helpful, compassionate

If this organization had 10 million bucks, it could...

Literally save thousands of lives. This is a cancer no one knows about. It would educate the public and Dentist for preventiona nd early detection. Right now thousands die because no one knows hwat it is , how you get, how to prevent it and how to treat t

Ways to make it better...

If I would have found this site sooner.

In my opinion, the biggest challenges facing this organization are...

Getting everyone that has Oral Cancer to know about this site. Also getting funding to continue the fight. All cancer is horrible but thsi cancer you never hear about and no one know where to turn to get good information.

When was your last experience with this nonprofit?

2009

July 27, 2009

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July 27, 2009

When my husband was diagnosed nine months ago, I started to do research. It's so important to be informed about all aspects of this illness. Knowledge is power and that's one of the many positive aspects of OCF. The Foundation helped me, as a caregiver, in practical ways with it's extensive library of knowledge and on an emotional level to cope. OCF offers all the up-to-date information about research and treatments for anyone to access. The forum for patients/caregivers/friends is like a big family, offering support and advice. OCF is an invaluable tool in the fight against Cancer because it encompasses both the scientific/medical and emotional aspects of this disease.

The Great!

I've personally experienced the results of this organization in...

OCF spreads awareness in the medical field and with dentists/oral surgeons.

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What I've enjoyed the most about my experience with this nonprofit is...

The support from OCF has been invaluable.

When was your last experience with this nonprofit?

2009

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