| Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Gheesh! I just saw an alarming post online. Someone asked about using a 31 day cancer cure method, and wondered if it would cure throat cancer instead of radiation or chemo. The woman's husband had downloaded some book about it from the internet. Fortunately, everyone on the page told her to forget it, but you wonder how much of that crap is out there!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | It's very common, and as long as there is someone, some say fools, willing to part with thier money, there will always be scams and frauds. I may belong to the same blog as you, and seen it also. Just the other day, another blogger on the same site posted that bogus John Hopkins e-mail from 2008, and was quite a discussion. Today, I posted this FDA PDF..Beware of On-line Cancer Fraud. http://www.fda.gov/downloads/ForConsumers/ConsumerUpdates/UCM143670.pdf
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Yes. I saw your posts. I was the one who said No! No! No! That's why people need to go to the OCF website as well as the Facebook page, since OCF vets everything. All of these "woo woo" cures, as Charm would say, are out there floating around. I was glad to see that nobody agreed with her on this. One of my coffee shop buddies posted the John's Hopkins hoax about a month ago, and took it down when I told her it was a hoax, thank goodness. She has a tendency to post a lot of stuff without checking them out, too...a lot of political stuff, too.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | This is exactly why facebook chat groups can never take the place of established places like OCF. Too many sheep believe what they are told simply because 'somebody' said so. The internet is full of too many scams are out there to part patients from their money without regard to the patients medical problems, its all about the money. Facebook serves a much different purpose than OCF, its for friends to chat. Medical advice should come from reputable sources, unfortunately not everyone knows the what is reputable and what isnt.
Here on OCF, correct medical info is given. Both the posts and main OCF pages are read by experts to ensure only correct medical advice and information goes out. OCF complies with the Heath on the Net Code which has its own set of standards a website must meet to be part of this group. Facebook and the other websites cant be edited or corrected. If a person is looking for correct info choosing a site (like OCF) where its part of Health on the Net is the best decision.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | I totally agree, Christine. I had a man at church go on and on about alternate cures. I finally gave up arguing with him and just gracefully got out of the conversation, because there was no way I would have ever convinced him. His wife, who is much more sensible, told me to ignore him, that she does. I have no problem with the Facebook group as long as that's not the only place people look. I always refer people to OCF for real answers. I have learned so much here. I only wish I had found it when I was actually going through my treatments!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I know what you mean, and see it often, and reason why I stopped posting on some blogs trying to help, especially after writing like a whole page lol, which takes me quite a while with my errors, and vision. I'm not the type to shoot from the hips, and most everything I experienced, and verify one way or another. Then the person responds with some nonsense or argument lol. I feel like I just waisted my time.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | I think it is worthwhile remembering that you are not responding to one person (who may not have a lot of sense) do to everyone who reads the reply (some of whom may have sense). Thinking about the general audience makes it easier to keep one's temper in the face of dangerous nonsense.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | The woman who posted on the Facebook page was actually posting about her husband, who wanted to use this bogus cure, and she got a lot of comments about it. One of the other posters told her to "wop him upside the head" until he listened to us. So, I'm glad that everyone refuted this crap.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2011 Posts: 117 | I was the one who told that woman to "hit him upside the head" if reading all of our posts didn't work. Sounds like the husband may be in denial.
It upsets me because we have lost too many warriors who fought with everything possible and just ran out of time and lost the battle. They would have been happy to have more time for more treatments.
DX 12/6/10 of T3 SCC Tongue. Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear. Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | There was song in the 70's by The Gap Band, " Oops upside your head." Lol. Maybe there is no husband? I hope it's sincere, and the pot method works on him!
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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