#81826 10-10-2008 10:07 AM | Joined: Sep 2008 Posts: 15 Member | OP Member Joined: Sep 2008 Posts: 15 | 4/99 Lump on neck. Biopsy local hospital. No cancer. 12/99 Johns Hopkins surgery. Stage IV, poorly differentiated, metastatic SCC with occult primary. I began a comprehensive study of cancer and treatments world wide. 5/00 JH diag SCC base of tongue. Stated most probably the primary. Refused rad. Went to what is now for treatments. 8/00 JH exam inc CT scan. No evidence of any mass. 11/02 JH dia SCC in neck. Removed an encapsulated SCC. A first for cancer type and location at JH. 2/03 JH noted a "flap" on tongue base. Option was to remove about 30%. Rejected surgery and returned for treatments as done in 2000. Exam by JH post treatments found no flap nor other abnormality. 1/05 JH found 2" tumor on side of neck and lesion on base of tongue. Refused surgery. Upon completion of alternative treatments each tumor was reduced about 80%. 3/05 JH indicated no neck mass and tongue base was visually clear. PET scan confirmed the exam but 3 other suspicious nodes found. 5/05 JH removed 3 nodes and in addition took 32 biopsies neck and shoulder area. No additional cancer found. 10/06 JH removed small encapsulated tumor. No post op action taken. 10/08 After many follow ups at JH no cancer can be found. Vernon
Last edited by Gary; 08-10-2009 09:53 AM. Reason: Links to unscientifiically proven, peer review are not allowed on this site.
| | | | Joined: Sep 2008 Posts: 49 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2008 Posts: 49 | Wow Vernon,
I'm speechless. All I can say is I'm glad to hear that as of 10/08 you are cancer free. Congratulations and all my best to you.
Ija
Ija wife-husband 47y healthy nonsmoker,nvr chewed.Dx SCC 01/05 primary left anterior toungue w/2 surgeries 02/05 no rad/chemo recurrence 12/07 no rad/chemo. 07/08/08 modified lt radical neck disection 3 nodes removed 2 pos SCC. TX 090808 taxol & carboplatinx7 radx37 w/ethyol.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Sounds like you had the best of both worlds: Alternative in Mexico and Conventional surgery here in USA. Definitely not the normal journey you read about on OCF. Curious though on how your John Hopkin's medical team felt about the mexican treatments. 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 | You should buy Lottery tickets.
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: Sep 2008 Posts: 15 Member | OP Member Joined: Sep 2008 Posts: 15 | JH medical team is supportive although I made decisions without input from them. Once I said what I wanted to do they were very interested. Evidence based medicine is coming to the fore in the US. I see an overall trend at JH and elsewhere of wanting to heal rather than practice medicine. Vernon | | | | Joined: Sep 2008 Posts: 15 Member | OP Member Joined: Sep 2008 Posts: 15 | David, NIH stats indicated for me a 1/2% prob of cure and a 19% prob of being alive in 5 years. I elected to try a cure where the success rate was estimated at about 52%. This will not be in print of course. How about the numbers for post op radiation and chemo as you know it? Vernon | | | | 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 | Vernon:
So glad to see you finally posted your info. Its a very interesting story. Im sure others will benefit from your experiences. Thanks.
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 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Vernon, Where did you get the 19% number? The AJCC published 5 year survival rate for Stage 4 oropharnyx SCC is almost 30%. I only had radiation and 2 Cisplatin Tx and my RO gave me an 80% chance of 5 year survival (even though my MO stated 28.2%). I'm a month shy of 6 years and have been cancer free ever since. You had 3 surgeries, unless I counted wrong. I have to agree with David on this one, you're a very lucky man, in fact, the ONLY one I know of here who has forgone conventional medical treatment (for the most part) and is still surviving. If it were me I would be just more than a little nervous about the recurrences that you keep having. Many others here have chosen an easier path out - i.e. no radiation and are no longer with us. I hope that you are right and that the alternative cures that have worked for you can be proven scientifically to be truly efficacious and not a fluke. Do you know what the morbidity rate is for the Alpha Medical Clinic? That's kind of an oxymoronic question since thay are never going to tell you (unlike US hospitals which have to publish that kind of data). 3 out of the 7 treatments mentioned on the link are not proven to be efficacious (and one is not a cancer treatment). So 1/2 of their cancer treatments are questionable. See: http://www.quackwatch.org/00AboutQuackwatch/altseek.html1. Whole Body Hyperthermia - They claim that there have been many published studies on human efficacy - I could only find animal studies and it was a combination treatment on rats, used with a chemo type drug. No human data published by a credible source. 2. Oxygen Therapy 3. Insulin Potentiation (IPT) 4. The Immune Modultory program looks an awful lot like IAT (Immune Augmentive Therapy) 5. Chelation is not a cancer treatment (and is a suspicious "treatment" anyway - right up there with colon cleanses. You're smart hedging your bets and being followed by a CCC. I truly wish you the best. It is my charter however to keep as much science and truth on the forum as is possible. I also want people to have hope that they can be cured and when the success rate for complete cure (response) of all types of cancer continues to improve with conventional medicine, it's impossible for me to champion alternative treatments without scientific efficacy studies. Reading testimonials on their web site doesn't make the cut. We don't try to discourage people from alternative treatment, That's why we have an alternative treatment topic on the forum. Our view on the matter has consistently been that alternative treatment should only be used adjunctively and with concurrence with your medical team (if that's the route you want to take) WITH conventional treatment. There have been many instances here where people went across the border, had no success and died because their cancers had progressed to an untreatable state by the time they got into treatment.
Last edited by Gary; 10-15-2008 06:53 PM.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Sep 2008 Posts: 15 Member | OP Member Joined: Sep 2008 Posts: 15 | National Cancer Institute, SEER Cancer Statistics Review 1975-2000 and/or National Center for Health Statistics, (2004). It seems like a long time ago now. I carried the info to JH at the time and their comment was that they had no quarrel with the numbers. I have never been one to be concerned with stage, etc. My concern is just like all, let's fix the problem. I presented a paper on alternative oxygen therapies to NCCAM, NIH in 2004. Several Ph.D. types asked for copies and stated that these therapies, some are evidence based, should be considered valid and used with the conventional. | | | | Joined: Sep 2008 Posts: 15 Member | OP Member Joined: Sep 2008 Posts: 15 | Gary, Suggest you check relative to quackbuster/quackwatch or the 20 sites they are affiliated with. Delicensed MD Stehen Barrett has lost cases in the California and Pennsylvania Supreme Courts.
Last edited by Gary; 08-10-2009 09:55 AM. Reason: Link removed for a non peer reviewed site
| | |
Forums23 Topics18,209 Posts197,042 Members13,228 | Most Online614 Jul 29th, 2024 | | | |