| Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Keep in mind the Placebo Effect; if you believe you are doing something that helps, it sometimes helps just to believe that.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Proper diet over a life-span may have chemoprotective impact, but only to the extent that your unique genetic profile allows it to. Curative... no way. Don't put too much faith in early studies, animal studies, or studies with only 50 people in them. We put some of this stuff on the RSS news feed, but only because it is interesting in the overall scheme in things, not because it is about to become the replacement for treatments as we know them.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I guess the word for the Placebo Effect would be pallative , not curative -- If it makes one feel better, and doesn't interfere with the treatments, than it can't be bad IMHO! I keep underestimating the importance of genetic makeup, which likely is the difference between the life-long smoker who never gets lung cancer and the once casual smoker who does, or similar examples of other risk factors.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | I would agree that if it has placebo effect, or if it helps you cope, feel less anxiety, like you are trying to do something positive, etc. that it is a good thing. At some point in time we will all come to that place where we realize that the clock is within less than an hour of running out. Up until that point (where rationalizations and placebo effects do not work because reality is sitting next to our with his arm around your shoulder), I'm up for what ever makes dealing with it seem somewhat controllable. But I am also not a believer in false hope. All these things need to be tempered with some reality so that unrealistic expectations to not make emotional crashes occur when they are not met.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Just to be really clear, I am NOT advocating placebo effect or any other palliative approaches over curative approaches, esp where they may conflict, merely that they don't hurt (unless they are done in place of curative approaches) -- IOW, if drinking the juices of the mulberry tree collected at midnite on the full moon makes one feel better, then do it, but don't stop the surgery, chemo or radiation and do stop the smoking and drinking!
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | I agree with you Pete. I am scared of getting around cigarettes even though I smoked all my life.(quit now of course. I feel like that is what caused my roller coaster, even though I have not been tested for HPV. I just assumed. I eat so healthy now, even avoid sodas now because of the additive in dark colas. However, I will have a glass or so of wine when I get home from work and finish my homework(washing, cooking, cleaning, etc) & sit down and watch my favorite tv show. Well, I deserve to be a little good to myself. I walk myself to death and am growing my own food and so extreme in everything else. I think it is a personal thing. I do eat avaocados and love them in scrambled eggs! I am a health nut, like I said, except for my glass of wine. Hope I won't go to the wrong place afterlife. (Just joking, of course) I wish we all knew exactly what to do and I know we would all comply. My thoughts are with you as I go outside to turn around 10 times under the moon tonight for good luck... Peace and love Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Same as you Debbie, Gave up the cigarettes at DX but still have a glass of red with dinner (medicinal purpose or so I am told)
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Personally, avocados or not, I am avoiding the tobacco and the alcohol -- As Brian is pointing out, one does NOT cancel the other, even if the avocados were a proven thing!
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I was told never to drink again...I was a social drinker and I miss it, I will miss having a glass of wine with my GF...a lot. I will miss having that cold beer after working in the hot hot sun. I will miss it. I have and always will eat tons of avocado's.
Years ago, my friend Dale, took his buddy to an "AA" meeting. Dale was sitting in the back and he popped a can...yes...Dale popped a can of beer! The circle of people looked at him and the counselor said, "Excuse me sir! You can't do that here.." Dale replied, "Why not...I'm not the one with the problem. I like to drink."
Dale, my friend, died last year at the age of 61. His first can of beer was opened every morning at 10.
Cheers...
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Ray Dale violated the cardinal blue-collar rule that distinguished social drinking from alcohlism: No drinks before noon - ever. At least that's what I was taught growing up - That's the basis for that classic Country song: "It's Five O'clock somewhere" 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
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