That's the title of this Interesting article from Florida on an Osteopathic doctor whose husband got oral cancer. Here are some excerpts for those who have a dial up connection and the link times out
[quote]Squamous cell head and neck cancer was the stuff of nightmares. I had seen it chew through the face or the neck like a trapped rat. As far as I knew, no one survived.Now I was receiving a crash course in 21st-century head and neck cancer facts. I learned it is almost an epidemic among adults ages 30 to 60. Ed was 42.

The five-year survival rate was up to 60 percent, thanks to aggressive radiation and chemotherapy. (Aggressive means you're pretty sure the treatment is going to kill you before the cancer does.)[/quote]
Dr, Pam 's husbands oral cancer

His recovery is less than optimal after 5 years
[quote]Like many people with head and neck radiation, Ed has had hearing loss and wears hearing aids. He suffers from unrelenting tinnitus (ringing in the ears), dry mouth and dental problems. And then there is the vertigo and claustrophobia (no more working under cars or in tight spaces).[/quote]

The only thing "wrong" with this article is that it does not refer people to OCF, but SPOHNC. But then her husband would just be one of the many many courageous people here.
Charm

I don't like the article - reads like a tabloid.

Maria

You are exactly right. I confess I have nostalgia for tabloids like the STAR, etc because they were my mother's favorite reading material. Even though she died 10 years ago last February, I still miss her. This article sounded like how she would have described my cancer battle, although I am very grateful that she did not to suffer with worry about me.
The rat eating the face image was pure tabloid hyperbole as well as the sarcastic comment on the meaning of aggressive therapy.

Your feelings are valid. Long time readers know my penchant for mordant wit. Thanks for commenting, IMO it was quite insightful
Charm

Just my two cents....I also found the article insightful. But I happen to like the tabloids too. It was short and to the point. Plus I was glad to see her mention the HPV virus. Thanks for posting it Charm.

Shelley

Charm,
I did a lot of e-mail updates to our friends/family when my husband was sick. I did my level best to convey the seriousness of the situation without scaring the bejesus out of people with descriptions of frightening therapy machines. Here is my description of the radiation mask fitting:

[quote]... went to Metro yesterday (Monday) to have his radiation mask made by Tony the tech. As the illustration shows, the mask is bolted to the table so that he will be in EXACTLY the right position when the radiation is applied. The mask is made of plastic which softens in hot water, and is then fitted to the patient.

Once the mask was completed, he was scanned in it with a Picker CT machine (this is their setup machine, not the diagnostic or treatment equipment, for you Picker ex-pat's). This scan will be used by the radiologist to develop the plan (program) for the shaped radiation that will converge to obliterate the cancer with the least possible damage to surrounding tissue such as salivary glands. The ability to generate these shaped fields provides a tremendous improvement in the quality of life post-cancer. [/quote]

Isn't that better than getting someone who might be facing the same thing someday preloaded with fear?

I am a writer, and have some idea of the power of words to twist reality. I did that myself - but tried to twist toward courage, not fear - as the article does, regardless of its title.

Maria

Let me clarify my last post: it was your comment that the article read like a tabloid that I thought was insightful, not the article itself. Since you just joined the forum less than two months ago, you may have missed all the posts from patients who were very upset with the mechanics of the mask fitting. I believe they would have found your description of the mask fitting as overly dismissive of their feelings. The tabloid version, scary as it was, comports with their experience. Their reality was far different from mine. Bear in mind this guy was severely traumatized by the mask fitting and radiation treatments to the point that he can no longer work under his car, so I think it's understandable that his wife conveyed that in her article.
It's not a question of "better", more of a issue of wildly varied experiences. Personally I did not find any of the TX frightening but rather annoying.
Charm

While the description of the mask may be a little exagerrated, I had a very hard time with it. I had to stop them during the fiting as I felt like I was suffocating (Thus I have 2 masks for trophys as the 1st one was ruined) And one other time I had to stop just before the machine actually started, get the mask off and go for a walk while another patient went in. Every time, I wanted to stop it before it was finished but somehow made it through. After my last rad, the tech told me that at 1st they didn't think I was going to be able to do it, but we all know, you do what you gotta do. So NOW I have a prescription for valium. Where was that back then? I sure could have used it.

Just as a counterpoint to David. By the end of therapy I was usually fast asleep at the end of a session and they had to wake me up.

I had more problems with the thing they put in my mouth to hold my tongue down. I referred to it as the "fudgesickle" and I understood the reason for it - it was to protect the top of my mouth from the radiation that was aimed at the lower part, but it often made me gag. Question - I'm not familiar with SPOHNC.
How does that compare with OCF?

IMO OCF is superior in everyway.
Quick example: the SPOHNC "Cancer Information" section on their web site actually goes to press releases (most recent one is last April and that was about honoring its founder. The most current medical information press release is dated October 1, 2007 almost four years ago.)
Likewise the newsletter archive shows the most recent one to be in 2007. But that could be because only if you pay $25 to join SPOHNC do you get a newsletter subscription.
Brian lets anyone join the OCF forum here without paying a penny plus access every part of OCF web site absolutely free.
(But donations are a very good thing - let's remember that)
Plus OCF's website actually gives information that is fully vetted and reliable-
SPOHNC focus appears to be different - local chapters meetings, no internet forums. Their resources links are quite comprehensive and include obscure sites - but THEY DO NOT MENTION OCF AT ALL NOR DO THEY LINK TO OCF even though they do link to other competing cancer sites like the former Yul Brynner foundation (they still have the old name even though it is now Head and Neck Cancer Alliance)
I'm biased in favor of OCF. However I am sure the actual SPOHNC volunteers are wonderful people. I just wish they would all join OCF and support it instead.
Charm

I've been to a couple of the HNC Support Groups here that are sponsored by SPOHNC. Mostly because the woman that is the facilitator of the meetings is absolutely wonderful. She, through Porter's Cancer Center, provides free one on one counseling to head and neck cancer patients.

At the meetings I went to, I gave everyone one of the OCF bracelets, gave them information about this wonderful website and about the 1st Colorado Oral Cancer Walk!

Cathi

I took a look at their website, and decided I much prefer OCF. The local chapters seem to be in large cities, and I live in rural NW Ohio. The closest chapter to me would be Cleveland, which is 2 hours away. They don't seem to offer the online support that OCF does, and that is so valuable. It would be nice if they did refer people to OCF, because I think that there is room for both groups.
.

There is room for both. I also went to SPOHNC meetings in the first couple of months. I think that each group in each city is very different (I went to three different ones in so cal) Any group is as strong as the most knowledgeable people in it. That was the problem I had with my face to face groups, no one knew very much. Where they really excelled was the human emotional aspect of it. But I didn't learn things that helped me from my contemporaries there, we were all right out of or still in treatment. One did have a nurse as the moderator, but she didn't know much about non clinical things like research, HPV at the time, and stuff I wanted to explore. PLease do not take any of this as negative feelings about SPOHNC, whose founder, Nancy I like a lot. It's just trying to compare apples and oranges. I wish we took in the 7 figures a year that they do, but that's another story.

The second thing I didn't care for was a hurting as I was, I wanted to talk to someone regularly. I mean almost daily as I was trying to sort out what I was feeling, and finding out about my disease. The groups met once a month. (that's why I bounced around to three different cities, so I could talk to some one at least three times a month. All the groups were more than 1.5 hours drive away, and this took some serious motivation and time to make things happen for me.

When I started OCF, the forum was meant to overcome what I found lacking in those groups. But obviously it lacks the personal touch, look in the face, hear the tone of the voice components of a face to face cancer support group.

So I think there is a place for both ideas, and both serve valuable functions even though they are very different mechanisms for accomplishing the same thing. Having said that, I occasionally post on some head and neck cancer list serves, and another web support group. They are nothing like OCF, and there is on one of them, no regulation of things that people put out there, some of which is completely wrong info, part of it harmful. Some people have left OCF in the past because it isn't a democracy, or we were hard on alternative therapies. I understand their feelings, but I also believe that we must be careful what we advocate for. So for some, the oversight part of OCF is not their cup of tea.

[quote=Charm2017]SPOHNC focus appears to be different - local chapters meetings, no internet forums. Their resources links are quite comprehensive and include obscure sites - but THEY DO NOT MENTION OCF AT ALL NOR DO THEY LINK TO OCF even though they do link to other competing cancer sites like the former Yul Brynner foundation (they still have the old name even though it is now Head and Neck Cancer Alliance)
[/quote][quote=zengalib] It would be nice if they did refer people to OCF, because I think that there is room for both groups.[/quote]
SPOHNC does include a link to OCF on its "Supportive Care"/"Resources and Links" page. It's under the heading "Resources for Oral and Head and Neck Cancer" -- not under "Cancer Organizations" or "Support Organizations."

Leslie

Thanks for correcting my error that OCF is "not listed at all". although it's lumped in the same category with Delta Dental which is an insurance agency. I had just assumed OCF would be under the other two categories At least they did put OCF on the supportive care page.
IMO OCF is the premier support organization for head and neck cancers but I'm a big virtual support fan.
But you are right and my statement that they do not list OCF is incorrect. I went back to edit that from my post but the time has expired. No problem, posters will see your timely correction. Thanks again.
Have you found out if they have issued any newsletter the last four years?
Charm

[quote=Charm2017]Have you found out if they have issued any newsletter the last four years?[/quote]
Newsletter archives on the SPOHNC website go through December 2009.

I got a newsletter in the mail earlier this year -- I'm not a member, but had ordered SPOHNC's guide to treatment ("We Have Walked in Your Shoes") after my husband was diagnosed (and before we knew he wouldn't have to go through chemo/radiation/surgery so didn't need to keep track of everything related to that). This was more than five years ago, I've made no donations to SPOHNC and the book was free, so I'm not sure why I'm still on the mailing list.

There was a point where charm was right and they didn't, but that has changed. When OCF started getting legs around year 4-5, they felt that we were "competition". In the non-profit world, like in the private sector, there is real competition for relevancy, and for donors. That's the only reason that The American Cancer Society won't let us put up oral cancer booths at their events, they are afraid that a head and neck cancer patient might start working to support us vs. them. Even with a billion dollars a year in donations at ACS this happens. Others in the head and neck world have at times felt the same. We put everyone on our resources page for the most part, except some that have little resources to offer. But this is a reality.

Nancy/spohnc eventually realized that even today OCF does not have the hundreds of thousands of dollars coming in from Bristol Meyers Squibb (who paid for two printings of their book, and all the prep work to make it ready to print) and other big corporate sponsors that they do, and feels less threatened, meaning they can link to us now. But when asked if they would partner with us in April last year when we had 2,000 screening sites around the US, like the ADA and others did, they said no. It's all very strange, as you would think with common goals, we would all work towards the same ends, but that doesn't actually happen. That does not mean that I don't think they bring something to the effort, and we can with a civil approach to each other, coexist.

Maybe a little injection of altruism will help the reluctant with common goals to coexist in their efforts and concentrate more on the results than on who has the most marbles. What so attracted me to OCF in the first place is the altruistic nature of all those involved.

Wow - I guess those kind of politics exist everywhere- not just in the business for profit corporate world.

@ Brian: I remember our conversation about many NFP's allocation of income being more about building and sustaining the organization rather than actually providing services to the target beneficiaries. As such, funding maintains brand recognition but doesn't do much else in addition to keeping a charity in the minds of donors. It's a cycle of advertising and administration to get donors to pay for more advertising/administration to get more donors.

Brian, if it wasn't for your selflessness, the OCF would be little more than an ad fund. Thank you for making the cause your life's work.

Leslie

Thanks again. Obviously I am flummoxed by their Web site's organizational architecture. I had just clicked on Newsletters on the main page which gave "current" articles and since they were so old, I didn't think to check the "archives" link.
Like yourself, I ordered the Bristol Meyer book yesterday without donating nor joining. I think Big Pharm can afford it.

Brian
Wow - Her published list of corporate sponsors: Amgen, Atos. Bristol-Meyers Squibb,CEL-SCI, EKR. Lilly, Sanofi-Aventis, and Varian is impressive. I can't speak for others, but it would not bother me a bit if OCF put up a similar special web page touting corporate sponsors providing of course they gave OCF sufficient funding. Of course, I know ZERO about getting funding from corporations as has been explicitly pointed out to me by many NFP organizations here in the DC area after I've applied for executive positions.
Charm

Her partner in SPOHNC that helped her start it almost two decades ago was then a powerful doctor at a major cancer institution. This is the same case for the head and neck alliance. When those companies came to the institution looking for other "help" with pending drugs or trials, he pointed them at the organization. So the relationships, some of them, stated out as a quid pro quo, or at least a formal introduction. It has been difficult for OCF, even though our list of accomplishment each year exceeds all other head and neck organizations combined, and we have been singled out by Guidedstar as the best small cancer non profit in the US, to get the corporate support. So those core introductions were how they built their organization.

We have always lived on the benevolence of patients and their families, combined with the income from our walk events. Our science board and I have an agenda that would turn many things about oral cancer on its head if we ever had a decent funding. We have two major articles coming out in the next 60 days co-funded by the OCF and NCI, and published in the Journal of Oncology. One which is very important, is a forward look at HPV+ oral cancers in 2020 and 2030, and the view is very bad. The other is a new approach to treating patients with HPV oral cancers that is less invasive over the next 5 years. Those kinds of research pieces change the paradigm. They are not cheap. We just provided 60 ipads to institutions that are enrolling patients in that study loaded with a 75 point questionnaire that will look at things not normally included in these trials, which is the patient's quality of life. At regular intervals in their treatment they will answer questions on the iPads that are immediately up loaded to a sever at the James Cancer Center that will collect all the data. OCF's participation in this big trial will change what we know about the patient experience in a profound way, and that will cascade into better collateral damage controls, both physical and emotional for future patients. Last April in our first national attempt at public outreach through the dental community, we had over 2000 dental offices partner with us to open their doors to do free public screenings, and 54,000+ individuals were screened in that one month at no charge. In 2012 we hope to double that number. Another organization has been doing this for 9 years and they have never had more than 200 screening sites (2011) and a couple thousand people screened. That organization, that pretty much only does that and nothing else during the year, has corporate donors that bring them three times OCF's annual income. What they do with it is hard to imagine, and is not detailed on their 990 tax return like ours is. But again they have a well known doctor at their head and he has relationships with pharma companies.

OCF has never been good at raising money. It's my fault primarily, because I am focused on other things, and I don't know how to do it well. In the long run, we have to get help to do this because if we are really going to impact the disease like I know is scientifically possible, we cannot do it at our current size and budget.

Charm wrote:

[quote]I believe they would have found your description of the mask fitting as overly dismissive of their feelings. The tabloid version, scary as it was, comports with their experience. [/quote]

I am sure their description of the mask fitting and therapy corresponds with many people's experience. And yes, I have read of peoples problems on this forum. Even if you understand the need for it, claustrophobia on top of all the other stresses could easily make it a nightmare. As a scientist without claustrophobia, however, my husband found it curiously comfortforting.

Whether it is "curiously comforting" or a "nightmare", the various reactions are all valid and describe how we are all different and react differently based on our own experiences. When my son was fitted for his mask, I think my own claustrophobic tendencies caused me to worry about it more than he did - i.e. what would happen if he has to cough, can't breathe, got sick, or all the other possible 'What-ifs"? Since those first days as CG, and the beginning of his Rad Tx, there have been so many helpful replies and various ways to handle "the mask". I really like the one posted by someone on OCF not long ago about the use of a bell for the patient to signal distress. It was never used but provided the comfort of knowing help and communication were very close by. My son got through it just fine, flirting with the cute female assistants, even getting them to take his picture while strapped down.