| Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | There seems to be no end to the scams out there. Someone posted on Facebook about a "Kangen" water cure. Apparently you buy a $400 machine to treat your water for a cure. Gheesh!
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | I too hate this type of post. On the Laryngectomy site there are posts about a Dr Buzynski who will cure you for $30,000 and then another on stopping all your medications and using "natural" remedies instead. Makes me want to scream. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | These things kind of scare me, when I think that people might even fall for them.
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: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I've seen it. I think it's supposed to be lower PH, and probably of interest in acid vs an alkeline cancer diet, which is a myth.
From what I understand, cancer cells do thrive in an acid enviornment in test tubes, and doesn�t work like that in the body, and there has been no studies to prove it�s effectiness in treating cancer. The ph stick for the saliva, urine, do not mean much, and is no indication of what�s going on in the body. The body�s ph is tightly controlled by the kidney�s, lungs and normal ph is between 7.35-7.45, and body continually stays in that range. When your level goes below 7.35 it�s acidosis, too much hydrogen in the body, and above 7.45 is alkalosis, too little hydrogen in your blood, which is caused by other means.
Restricting the diet during treatment, may just deny the body some of the nutrients needed to fight cancer, and repair the body.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Actually, the top of the line Kangen Water ionizer is 4 Thousand dollars not 4 hundred. When the Wall Street Journal ran an expose, it's comment section was overwhelmed by ardent proponents. Most of them decided not to mention that they were multi marketer distributors (yes it's semi legal Pyramid scheme that HerbaLife is being accused of). It's actually an imported Japanese fraud that is so lacking in science that competent adjunctive integrative holistic doctors draw the line at as beyond the pale Really, Ph water?. So sad how people prey on our hopes and fears. I get so upset and sometimes overreact here on the forum when posters actually link to information on this stuff that I've decided to start using a canned comment at first with maybe some details. So it will be obvious to even the oblivious (giving them the grace of the doubt that this is just an innocent inquiry of what do we think of their facebook cures or just discussing) will recognized that my objection is not personal to them at all. It has nothing to do with them, but with the way these "cures" TX etc prey upon those most vulnerable. thanks for giving me a post to test it out on since you both start off denouncing these two scams (I've torched DR B before here). [quote]There are many claims on preventing cancer, curing cancer, treating cancer on the Internet, Facebook and TV. It pains me to see these false hopes repeated on the OCF forum. Like it or not, the fact is that there are ZERO "alternatives" to the only proven methods of curing oral cancer: radiation, chemotherapy and surgery. As to this post I perceive no need to refute these arguments with somber reasoning and copious citation of precedent; to do so might suggest that these arguments have some colorable merit.[/quote] ]No need to pretend this is not a fraud Let me know any tweaks or suggestions as it has come to my attention that by using sarcasm to convey the idiocy of the treatment, the poster took it as calling them an idiot. I want to avoid that in the future . I do want everyone to feel welcome on OCF while still having it the one and only place I have found on the internet where the forum or comments do not allow Defenses of these frauds even when using a form of Praetertio : eg. I'm not saying it works, but isnt' this worthy of discussion Charm
Last edited by Charm2017; 02-13-2013 03:25 PM. Reason: toned it down
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 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | I had someone similarly "pitch" this product, and a naturopath advocating adjusting pH levels in your body, as it was "proven" that cancer cells could not survive in a properly pH balanced body.
I simply thanked the person for their interest, and advised that I preferred to take the advice of my team of medical professionals. I felt there was no point in arguing as those whose are ardent in their beliefs cannot be dissuaded, and arguing simply encourages further attempts to prove thier point.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | The same thing has happened to me, Tina. A man at my church was giving me a similar pitch, and I just said that I had faith in my doctors and walked away. I also had a former co-worker tell me that fluoride was poison when I was talking about using the trays. So, I just told her that I trusted my dentist. Sometimes, that's all you can do!
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | How funny but not humorous. The body does need to be somewhat neutral or alkaline but does that justify shelling out exorbitant amounts of money? Live with reflux and you "automatically" consume lower acidic content foods. Proving what caused cancer is almost as tough as proving there is a God. My older and wiser thought process says throw whatever you can at it and sleep peacefully that you did all you can or wanted to. That's what gets me through the night!
Yes fluoride and chlorine in our drinking water is bad for us but guess what, my teeth rotting out and causing infection and osteoradionecrosis that could kill me as well.
The only time I run faster from "have I got a deal for you" is when a dentist looks at me with befuddlement and asks"what exactly is an official oral cancer screening?"
Now if someone says this will fix your problem, it is expensive but I want you to get better so just try it...call me the live crash test dummy! There is nothing more sobering than the medical community saying there is nothing that can be done for you, it is not treatable, not reversible, progressive and will end your life. Sometimes symptom and side effect management is good but there are no silver bullets to treat this disease and what comes with it.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ed, great post. Charm...wow brotha I'm impressed!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Baking soda raises alkalinity in water.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | So does lemon or lime - the premise behind an alkaline diet is that we bombard ourselves with acidic foods all the time (sugary crap - processed foods with chemical garbage in them) the higher the sugar content the more acidic the food - the more you eat drink of this stuff the harder your body has to work to maintain the balance - and if you have organ issues damage to kidneys, liver etc... It's even harder then throw cancer into the fray where our body has to fight that as well. So I'm not touting the kangen water thing as you can alkalize your own water - but I am saying that by eating healthfully (as I always say) and minimizing sugary processed foods it can only help in the long run. Also a lot of green leafy veggie can't hurt as they are alkaline in nature... Kelp anyone? Spinach? Boc Choy? Chard?
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]So does lemon or lime[/quote] This caught my eye like a big hook in the fish's eye. I had to read up on this and in fact, it appears what certain acidic food at the tongue are alkaline-forming once in the gut.
It makes me question even more the canned crap people drink to boost nutrition. Since the bulk of it is sugar based, I wonder if the net effect is it tilts the internal balance toward acidic? I hope so since I am on a mission how to pass the "rads-chemo" gauntlet by getting nutrition orally and skip the PEG.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Apple cider vinegar too. I used to use Braggs, unfiltered organic.
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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Donfoo, My husband was a diet controlled diabetic at the time of diagnosis, so we were very careful about the sugars in his diet throughout treatment. He made it through 5 weeks of radiation without the tube. He never went completely off of solid food, but towards the end used a ton shakes to get his nutrition. We were able to find a protein powder that had no sugar or carbs, all protein, that I would mix with cold milk, bananas, peanut butter and omega oils. It is possible to avoid sugar in the supplements. Post note, losing 50 lbs through treatment, he's no longer diabetic.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | oops, meant to give the name of the protein powder, Beneprotein. It also had the great benefit of having no taste or texture of it's own. So many were vanilla or citirus, flavors he could not stand.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Thanks Ana, Always good to hear from those who battle through by going to blenderized drinks and avoiding the PEG. I have found a couple very tasty and easy to go down pure protein powders as well, so I am prepared to make it through orally too. Your husband sure did have quite a different treatment plan than the standard. Glad it is working on the cancer.
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there actually if you stick to vegetarian or vegan proteins they sweeten with stevia - a natural sweetener with no impact in your blood sugar. Personally I used boost probably for 3 weeks (went peg less and needed high protein as I am a veg head) then I started mixing protein powder with my ensure, and got off of it as soon as I could by switching to protein shakes of my own making - fresh fruit Almond milk or quinoa milk and protein powder - my favorite kind is Sunwarrior the complete one (they have a brown rice one as well I actually mix them) - it's not chalky . And yes foods we sometimes think of acidic are actually alkaline to the body! hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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