| Joined: Oct 2011 Posts: 4 Member | OP Member Joined: Oct 2011 Posts: 4 | I was wondering if anyone had any experience with any of the "no so main stream" treatments. I have had surgery, radiation and chemo and am looking at some of the alternative treatments such as immunotherapy. I have looked into Envita Medical Center and Sanoviv Medical Institute. I just was wondering if anyone in this forum had any personal experiences with any of these places. | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Both the EMC and SMI websites just reek of scam and bogus medicine IMO. Mix a little truth with a lot of lies is the recipe these places use. The American Cancer Society site shows zero Immunotherapy approved by the FDA for head and neck cancers unlike some other cancers. It is a promising future alternative but at least for oral cancer, it seems "not quite ready for prime time" But since you already had real TX - the only harm would appear to be to your pocketbook and these side effects [quote]Side effects of immunotherapies can vary, but most exhibit similar symptoms, including fatigue, a rash or swelling at the injection site, and flu-like symptoms including nausea, diarrhea and fever.[/quote] MD Anderson uses immunotherapy but my understanding is not for oral or head and neck cancer. It has a good reputation even if they stole OCF's slogan. Here is a link to their page where I excerpted the side effects Immunotherapy As for patients who use that instead of the TX you got, well they are dead so they won't be responding. 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: Oct 2011 Posts: 4 Member | OP Member Joined: Oct 2011 Posts: 4 | I am new to the forum...can you tell me what IMO is?
Thanks for the feedback. | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 |
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | Ted, welcome to OCF! Are you having a recurrence? I hope you arent. If it were me and I was having a recurrence I would never trust it to something that is not the standard tried and trusted treatment procedures like chemo w/ radiation and/or surgery. I have had all 3 and know that if I would be sick again I would head to one of the country's top cancer centers. Please let me know if you need a list of cancer centers. 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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi Ted - I'm going to mimic Christine pretty much. - first off I sincerely hope you aren't going through a recurrence. I'm hoping that you are just looking for some way of living post treatment. If that's the case - actually even if you ae dealing with a recurrence, being treated at a CCC is the way to go. As for anything else - the best thing you can do for your body - recurrence or not is eat healthfully - and exercise - and by that I don't mean go out and pump iron, I mean go for a walk - breath in the air, maybe do some meditative yoga, and make sure you're taking in enough protein to heal, and for me I limit my sugar intake (carbs are not all made the same). I never use raw sugar, or fake sugar! I eat low carb fruits - and grains and limit dairy. Anyone trying to sell you on 'alternative' beware especially in place of actual treatment. Complimentary treatments are okay (eating well, exercise etc..) but anything out of the normal should be run past your dr. Good luck!
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | To the best of my knowledge, no one here, who opted for alternative treatments, is alive to talk about it. Your best bet is conventional medical treatment.
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)
| | |
Forums23 Topics18,242 Posts197,125 Members13,310 | Most Online1,788 Jan 23rd, 2025 | | | |