| Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | For all those that are excited about this test let me bring you some reality. I have spent some time today with other researchers at JH. I have heard some interesting comments, which I think are universal to all large institutions. First of all I state again that a test that is 40+% effective at finding something is useless in the overall scheme of things. Ditto one that costs so much that insurance companies won't pay for. You have to remember this was done in a lab with a budget and equipment that enables them to do this. (I won't repeat here what others said at JH that was negative about this whole thing to protect their wiliness to talk openly with me, but there was plenty of that.) My response to all the negatives was, if it is so weak, why is this making so much news?
JH's development/fundraising department and individual researchers live off donations and grants. You don't publish you perish as a researcher or as an institution. As it gets more competitive to get this money, you have to position your institution as someone who is on the cutting edge (whether that is a reality in any given study or not). Jump in the institution
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Human clinical trials on the Salivary Diagnostics test I am speaking of, will not have to go through human clinical trials, and the FDA approval will be a walk in the park. Why? The patient is doing nothing but spitting into a test tube. Nothing is touching them, and they are unaffected (as in a drug or device) by the process. All the company has to do to take it to market is show that the test delivers what they say it does.
Last edited by Brian Hill; 01-05-2008 12:27 PM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2002 Posts: 34 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2002 Posts: 34 | You must use a news reader or Firefox to view the link. Check out RSS FAQ's for more info. Internet Explorer is not reccomend for anything related to the Oral Cancer Foundation Site. I would upgrade to Firefox as soon as possible. | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Thanks Markus, Brian, and Mr. Webmaster. I will work on my end..glad its me and not the website. Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | yesssssss down with explorer! (sorry could not help myself... tend to root for the underdog) ... on the other hand Gates has been extremely generous (Gates foundation) and supports a number of medical endeavors (incl. research). Any way to tap into this?
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Markus - given your background you likely know about grants. There are things that The Bill and Malinda Gates Foundation issue grants for, a couple we might even qualify for since they have to do with reduction of disease through education etc. Bottom line is, writing intelligent grants with all the financial projections and measuring end results requirements takes days to do one. Many institutions have hired professional grant writers to keep working on getting money this way. I don't have any help to do it, and am not that experienced at doing them myself (Let alone I am doing 14+ hour days as it is). More than that, the Gates Foundation gets over 3,000 grant requests a day. So even well written, you have to be chosen out of a pretty big field. If we had a grant writer, we would also apply to The Robert Woods Johnson Foundation and even the NIDCR who all have grants available that we could qualify for. (Still competing with other groups, organizations for these grants.)
As to Internet Explorer, it is no longer a web browser that is in the league of the others out there. In the day, it was THE browser, but it has certainly been left in the dust. Once I got away from it, I had less issues with spyware, viruses, pop up pages, pages that didn't display right, and so much more. But like most I was afraid of changing from something familiar. Chester got me started in FireFox which was a painless transition in retrospect. Sites that I thought were lame in the past actually display well and work right.... guess it wasn't them after all.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Brian,
I have to admit when I listened to the Science Friday interview, it seemed like he glossed over the issue of only 48% accuracy pretty much. What he said was that basically that depends on where you set the criterion used to decide if the results of the test indicate possible cancer. So he claimed you can adjust the criterion so that it would catch all cases of cancer. Only problem (which he kind of mumbled very quickly and was not picked up by Ira Flatow, who normally is good about catching things like that) is it would create a lot of false positives if you did that. I thought "great. Just like PET scans. Expensive tests that produce a lot of false positives and scare us silly." We've already seen on this board that many places won't even do PET scans because there are so many false positives so I fail to say how adjusting a criterion so that it acthes most cases of new cancers but creates a lot of flase positives would really be helpful.
I am encouraged, though, to know that this other one you discuss is in the works.
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Early detection, which is one of the obstacles to reducing the death rate and also reducing the morbidity of treatments that patients end up with, is the Holy Grail. Because it is no longer easy to distinguish who needs to be screened, OCF is asking dentists, ENT's, hygienists, general MD's etc. to screen everyone that walks in their door opportunistically at lest once a year. There is high resistance to this in the professional communities. We have to show them how to make this a profit center in their practice if we are going to get compliance, and also get insurers on board with coverage for simple eyeball and finger screenings. Another challenge to be overcome is that most of the professionals that I listed above don't know how to screen properly, and keep proper records of things. This is something that we are working on, and by February's end OCF will publicly issue a standard of care statement that the ADA should have done years ago. This is going to make waves in the professional community that think that you cannot get sued for failure to meet standards of care that do not exist As someone who has been deposed in plenty of lawsuits against dental and medical professionals I can tell you that there is an implied standard of behavior, since they have been taught in school how to do things, and there has been plenty of effort in the professions to get them involved. There is no ignorance at play here, there is only lack of involvement and compliance in doing what they know should be done, and staying current with the information.
But what would make much of this easier is a sieving process to mass screen from the general population, people that are at risk. We used to say over 50, male, black smokers were mandatory, but with the virus it is a whole new game. We don't know who. So the saliva test is a mass-screening tool that can be administered by any assistant, read by a computer chip inexpensively, and we can pull out of a general population those people that have the biomarkers to develop the disease. Once they have been identified, those are the people who the professional community needs to keep an eye on for the first manifestation of a disease state or pre malignant condition. This sieving process is a necessary tool, combined with a non-complacent professional population, and an American public that has heard about the disease and knows to get screened each year just as women do in cervical cancer exams.
In Canada, conventional screenings are sending people to designated dysplasia clinics where they will be watched and not allowed to fall though the cracks and end up with a delay in diagnosis. Combine that with an agressive tobacco cessation and viral cause public education effort, and you have a winner. Clearly since the state is paying for the medical care, they get that early detection before very expensive curative treatments are needed saves the government dollars and yields the best outcomes for their population.
You guys want to get all excited and email professionals about things....THIS message is what they need to be on board with. A new swish test or the salivary diagnostic test is only one piece of the puzzle, and by itself IS NOT going to change the world or the death rate from this disease.
Last edited by Brian Hill; 01-06-2008 05:46 AM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Brian,
Can't wait for the wave to hit the ADA. If I didn't need them for medical insurance after my wife retires, it would be a quick goodbye when I retire.
Jerry
Any chance of me getting a preview?
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Hell, I forgot to post this. One of the things i particitaed in in the Cancer Study involved the swish test. It must not be very reliable becaue mine is back and it didn't show on the tests I did for the study.
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
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