| Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | I would like as many of you who care to comment on it to read this article. It is well researched, the information in it is not OPINION, but carefully documented facts. When you have read it, I would like you opinions on why this situation is the way it is. Think of yourselves, think of your neighbors who have not had a direct contact with cancer. Think outside the box. Think what billion dollar organizations like ACS, or hundreds of million dollars a year organizations like Komen have to do with it if anything. Think what the medical establishment is like, in all respects. Please give me back your ideas no matter how obtuse they ay seem. I am going to be talking with Senator Rockefeller next week. I have conversations scheduled with his staff. They are working on the health care bill and and addendum to the Medicare laws. Thanks. http://oralcancernews.org/wp/medicines-to-deter-some-cancers-are-not-taken/?
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | A couple of observations, obtuse as they may be ... incongruent?
A) information overload. One day coffee is bad then next day coffee will protect you from Alzheimers and cancer.... eventually people say screw it. B) ignorance of the public. A report on CNN or web of some quack is treated at the same level as real researched and supported info. C) research by definition does hardly ever claim 100 % effectiveness, the quacks do D) money, something that does not cost a mint cannot be worth much. Plus who is pushing this? Also there is not much money in it for the MD's.. although there ARE those who push this now. (May I point to US hysterectomies.... ) E) Even if you have a decent scientific background it is difficult.. (Se, Vit D, E, kinase inhibitors, etc). Plus a lot of stuff makes sense in a narrow application (i.e. hyperthermic theapies etc). F) did I say B.... G) Political considerations... Gardasil. Also, as a physician you can get in trouble if you tell a patient that they are overweight. ... This is a fact (in GA). I) We need a place where you get spin free info ... besides OCF. NIH might (should?) be the place......
... and I am off the soap box....
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: Aug 2009 Posts: 24 Member | Member Joined: Aug 2009 Posts: 24 | Recently I asked my husband if he would have quit smoking if he knew what lay ahead for him. He told me that while he could logically understand the risk of smoking he wouldn�t have believed that it would ever happen to him�somehow, someway, he was beating the odds and would continue to do so.
I could understand his logic. If you are feeling relatively healthy there is no real reason to believe or focus on the possibility that you are vulnerable to a deadly disease. The body is not sending any warning messages. Why would you take a medication now, on a daily basis for something you don�t have and might not ever get? I hope that someday researchers develop a test that clearly demonstrates to someone their risk of developing cancer. Individualize the approach to patients! Let them know that cancer is not something that happens to other people- it�s something that will happen to you- no matter how you are feeling today.
If someone had shown my husband the results of a test that showed his risk for developing this cancer as clearly as they did on the day he was told he had cancer, I think his response would have been different.
Base of tongue spread to 2 lymph nodes.stg?? Dx 5/5/09 peg Tx started with 35 rad, 7 weeks cisplatin, 2 weeks 5-fu. completed second course of tx with reduced dose of cisplatin & 5-fu. All clear Post radiation swallowing difficulties 12 years later | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Brian,
Fascinating article!
I think there is an inherent distrust of doctors and a huge distrust of 'big pharma.' How many times do we hear that the Cure to Cancer exists but is being hidden from us in order to reap the big profits from treating cancer? Not to mention this weird notion that taking a pill every day for life is a huge inconvenience or something. (When I had to take radioactive iodine to kill my thyroid as a result of Graves' disease, that was the biggest warning, that I'd have to take a pill every day - like that was some huge burden.)
People also think it won't happen to them, case in point, smoking. We all know it causes major deadly diseases and yet, I still see young people smoking! Its all I can do to not walk up and show them my tongue. But they're invincible, right?
I think there's just a huge stigma about taking drugs, supporting 'conventional' medicine, giving money to 'THE MAN' and as stated in the article, this notion that by going an holistic or natural route, we're the ones in control.
I'm going to ponder this further.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Public not always made aware of these potential cancer preventing drugs. Most PCP depend upon the pharm companies to keep them inform so if they don't know, we aren't told and if the pharm companies don't spend the advertising $'s. Heck even if they do (Gardasil) response can be dictated by other issues like religion or politics. Today something is touted as medically good for us and tomorrow it's medically bad for us so why listen? Human nature, even if we are told to do something we just refuse to do it. The good and the bad...in our political quest to protect us from false medical claims we also have made it sometimes impossible to bring something to the public that is beneficial? The FDA won't approve the Gardasil vaccine for say oral cancer unless they have a study that would take decades to prove even though logic says if you have a vaccine that effectively kills 100% of HPV 16 and we know that HPV 16 is linked to a large % of SCC in the oral cavity, then it doesn't take a brain scientist to conclude that eliminating HPV 16 will therefore eliminate THAT cancer.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | Great article. My random thoughts: Both individuals' and organizations' will to survive is on the most efficient and easiest way to get from point A to point B.
Prevention takes a back seat when you are vividly seeing and feeling the short term consequences of each decision to get through the day. Research groups survive on funding. Politicians survive by re-election. Medicare survival needs funding and/or cuts. How to manage the ratio of available tax payers vs recipients.
Most intriguing to me is the Biomarker research. That is where I would put my money. This seems to have the most promise on better quality of life for society as a whole.
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Brian Very provocative article. On a personal level, I was relieved to read it and see no mention of any drug, diet, nutrition or exercise program that would have prevented my base of tongue cancer(or any of the OCF family's oral cancers). The news that there were clinically proven preventive medicines for both prostate and breast cancer came as a shocker to me. Equally compelling was the debunking of the diet and nutrition claims that I have railed against here. At the risk of being cynical, I feel that large Anti-cancer groups like ACS or Komen are just as bad as big pharm in keeping all the research dollars and so called public service ads focused on the twin illusory chimeras of "a CURE" or "diet & exercise". Shame on them for not spreading the word of an affordable and easy medicines proven to reduce the chance of prostate and breast cancer. There is hope though. Many people see past the American Heart Associations pablum and follow the South Beach Heart program of taking statins daily. The immediate problem is that I did not see any glimmer of a similar preventive breakthrough for oral cancer (except perhaps for Garasil but since I am not HPV positive, that would not have helped me anyway). Good luck in your talk with the Senator - and thanks for sharing this article. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Interesting article. I think Gardasil could be an easier sell than the preventative drugs you mentioned that require taking pills for 5 years of longer for something that has a lower than 50% chance (in most cases cited) of happening. Taking a daily pill creates a psychological state of "intrusion" of anxious thoughts about why you're taking it and reminding you that you might get something serious down the road. It's one thing if you've been diagnosed with something (high blood pressure) where the event has actually occurred. It's another thing if you're taking a medication for an event that may or may not occur. Gardasil faces those same issues of perception of one's risk, stigma and cost and effort(barriers), and intrusive thoughts. But in comparison to the others, the three vaccine doses are over pretty quickly and can occur when you're 9 or 10. Also, if one needs to take a pill to possibly prevent breast cancer, would one eventually be offered pills to prevent colon, pancreatic, ovarian, prostrate, etc. cancers? For some, organic diet, vitamins, etc. likely seem simpler and one is promoting health rather than preventing disease.
Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | Joined: Oct 2008 Posts: 247 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 247 Likes: 1 | People are hesitate to take medication on a regular basis for something they may or may not get and naturally worry about potential side effects. Vaccines might be an easier "sell" as many are already required.
Serious trust issues due to changing and sometimes contradictory medical advise.
The Blame Game - When medical establishment does not have an explanation, blaming the patient for something she/he did or didn't do (poor diet, weight gain, etc.) and then discovering that it had nothing to do with getting cancer, does not instill trust.
Do we need more research funding for brand new approaches? Money for researchers not tainted by old assumptions? Why are certain cancers more popular and therefore receive more support and money? Obviously these are not original ideas.
Honestly with the public might help - stating that this is very complex and you can do everything "right" and still get cancer. Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | I agree with some of Lottie's comments above about possibly over-funding for some cancers (e.g., breast and colon) and/or not targeting the public messages in a manner which will actually reduce deaths. I believe there is serious underfunding for many types of cancer that have a high mortality rate.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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