| Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Newsweek had a recent article blasting Oprah for hosting guests such as Grant Achatz who make strong recommendations for treatment that is counter to what most physicians recommend. I was in the dentist's office and didn't get to read it all but the article focused on Suzanne Somers on who was advocating daily estrogen and progesterone creams, daily human growth hormone injections, 60-100 vitamins and supplement pills a day, etc. (how does she have time for anything else!). Grant Achatz has received a great deal of press for rejecting recommended treatment protocols. I hope his story has a good ending as I think he completed treatment less than two years ago.
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | The Newsweek article (which does not mention Grant Achatz) is here, a photo gallery of Oprah shows that offered "risky advice" is here and a podcast on the topic is here. One of the doctors Oprah has had on her show, OB-GYN Christiane Northrup, advised against vaccinating girls with the HPV vaccine, Gardasil (see #2 in the photo gallery and page 3 of the article).
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | If he survives it , he didn't have much. Hell some people are lucky and need just a touch of anything and the ones that have it have to fight for their lives.
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
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | It is so interesting to read the tone of this thread. There are two things I have to add to this. Most of you probably remember how his treatment was originally touted as an "experimental treatment." This was/is so much BS. No one in the US gets an experimental treatment without an FDA EDA approval. And they don't give them out lightly and it takes forever to get one, with a well documented protocol and more needed to even apply. Pharma companies spend millions and years to get one. Without one, doctors would loose their licenses, institutions would be reprimanded in the worst way.... it just does NOT happen. But it does add drama to a story.....
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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Brian
Probably a good move to send such info privately. I see now that google pulls up this very thread with its comments when I do a general search on Achatz. I suspect this thread evokes strong feelings in many of us for various reasons. I freely admit to being ENVIOUS of anyone who beats this cancer with "just" radiation and chemotherapy. I was flying so high last year when I was in full remission that it makes my current situation seem far worse than it really is after having the tongue surgery and even more radiation and chemo. Looking forward to Monday's email charm 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: 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 | And there are those of us that were "lucky" or whatever word is appropriate, that did "just" have to have the chemo/rad and believe me that's exactly how I feel when I read the stories of a lot of you that had to endure so much more and end up with many more side effects. I basically stopped complaining about a month after Brian invited me to this site.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Charm, as one that has read your post from the 1st one thru now, I sure can see your ups and downs, You have had a tough road to hoe and without the hoe,, You are one to be admired.
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
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Thanks everyone for these additional articles. Very informative. The one on how Oprah can make you sick was very interesting. She is so very influential and she should be a lot more careful on what she endorses on her show regarding health issues.
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | DAVID WROTE: "What would you have done?"
For one, I'd let my wife have as many stray pups as she wants. Seriously, you were fortunate to have such a vocal and forceful advocate.
You could have stopped at any point in your road to a CCC, and your story most likely would have had a different ending. Some would call it good karma.
We shouldn't fault someone for opting to live life on his own terms and finding a viable treatment that could help him meet these terms. I don't think he made that decision lightly.
His ultimate message was for early detection and be your own advocate.
I believe you do what you think is right at the time, take ownership of the decision. I think he's doing that.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | 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 | Marlene,
OK I'll tell Jo she has another outlet for her animals....YOU.
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.
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