| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | I was going to post this in the Adjunctive Therapy forum but the OCF blurb clearly state that it is NOT for Alternative medicine . This link is rated CT (Charm's Tabloid) so don't be expecting medical journal quality or to see it in the OCF news feed (the Havard expert admits it's assumption not proven fact) rvard Cancer Expert: Steve Jobs Probably Doomed Himself With Alternative Medicine [quote]Steve Jobs had a mild form of cancer that is not usually fatal, but seems to have ushered along his own death by delaying conventional treatment in favor of alternative remedies,[/quote] Gawker's conclusion sounds like the advice we give new members all the time. [quote]....don't waste time by delaying medically recommended treatment in the hope that something else will work.[/quote] The comments are almost all about the anti vaccine fringe with only one anecdote on how a Mexican clinic mistreated oral cancer. 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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | I think that there is no mild form of pancreatic cancer, which has the lowest survival rate of any. I also think that when doctors tell you there is nothing else that they can do, many, especially those who can afford it, start to try anything.
This man left before his time, no question in my mind or likely in his. With such a passion for life, and such a potential to bring so many new insights to the world that I can only imagine that his mind must have held - being driven the way that he was- I feel that he tried every logical and practical real world medicine means, did not abandon them, and in the end tried the unconventional - a hail Mary pass.
The man worked on logic. He likely knew anything would be along shot, AFTER his conventional treatments failed to restore him to health, but what they hey at that point� if you have the $ and the inclination. When my time comes I won't give my money to any charlatan out there, but some fringe therapy that has only worked in animals or whatever, bring it on, I've got nothing to lose.
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 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I have to agree with Brian. Steve Jobs didn't have your everyday pancreatic cancer which typically has about a 6 month or less time span between diagnosis and death. His was a very rare form of "islet" pancreatic cancer (between 200 - 1,000 cases a year and is considered very treatable. The doctors familiar with his condition stated he was just "unlucky". I asked with H&N surgeon one time why I survived and why so many don't he also told me -"luck". Back to Steve - he waited 9 months before surgery and that is not considered to be a negative factor in his prognosis. Since the pancreas is so centrally located it makes metastasis very easy, hence the liver transplant. You can bet that he had experimental treatments. Even the NCCN oncology practice guidelines recommend clinical trials whenever possible . Short and untimely death but, in any case, he still survived 7 years. What a ride.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Mea Culpa, Mea Culpa, Mea Maxima Culpa. Guess this headline ranks right up there with "UFO pilot body hidden by US Gov't" Brian and Gary's comments moved me to do a little more research at sites less tabloid and more reliable. At first I was preparing a rebuttal showing the time line that this diestwas NOT AFTER medicine failed but BEFORE and INSTEAD of the surgery. But one of my favorite alternative medicine debunker, David Gorsky at his Science Base medicine site backs up their point about the delay not being meaningful [quote]While Jobs certainly didn�t do himself any favors by waiting nine months to undergo definitive surgical therapy of his tumor, it�s very easy to overstate the potential harm that he did to himself by not immediately letting surgeons resect his tumor shortly after it was diagnosed eight years ago.....Aside from the initial nine months, Jobs, as far as we know, relied on exclusively on conventional therapy to treat his disease. [/quote] SBM concludes [quote]Jobs was unfortunate in that he appears to have had an unusually aggressive form of the disease that might well have ultimately killed him no matter what. That�s not to say that we shouldn�t take into account his delay in treatment and wonder if it contributed to his ultimate demise. It very well might have, the key word being �might.� We don�t know that it did, which is one reason why we have to be very, very careful not to overstate the case and attribute his death as being definitely due to the delay in therapy due to his wanting to �go alternative.[/quote]� Luck still counts.
Here's the link to the full article which also mentions how the fraudsters are claiming it was conventional medicine which killed Jobs [url=http://www.sciencebasedmedicine.org/index.php/the-death-of-steve-jobs/][/url]
Rest in Peace, Mr. Jobs, we will all miss you 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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | I love it when Gary and Charm post. They do their research, and when something goes awry with their observation, they are the first to correct themselves, ensuring that the board always puts out the best information to readers later on, perhaps even years down the road who read a thread.
Surviving pancreatic cancer is a rarity, and he lived longer than most. No early detection possible, hidden deep within you, and a lack of symptoms that you might notice right up till it is about to throttle you completely. That is a recipe for a bad outcome.
Sometimes all you have is luck. The only certainty is that life is uncertain.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Boy howdy Brian.boy howdy
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Brian and Gary keep me sharp and challenge me to do better. On issues I am passionate about for personal reasons, I often overstep. When I was first diagnosed, some work colleagues actually paid for and sent me bogus cures like Essiac tea or other quack remedies they claimed worked for family members or friends. I know they meant well but it makes me hyper vigilant about such claims here on OCF. In re -reading the Science Based Medicine article - [here's a link that should work -unlike the one I posted that you have to cut and paste] SBM Steve Jobs , I noticed a section that also debunks an additional alternative TX rumor about Steve Job's stay at world-renowned University Hospital of Basel, Switzerland. To make amends for my hasty prior conclusion, here it is [quote]For some reason this is being portrayed in the press as somehow �alternative.� In reality, from what I can tell, it�s science-based, but experimental. Basically, in this therapy, radioisotopes are linked to a peptide hormone, receptors for which are found on the tumor being treated. The hormone then binds to the receptors, bringing the radioisotope close enough to the tumor cells to deliver a high dose of radiation. This therapy is not �alternative�; although it�s not standard of care, it�s definitely science-based. [/quote]
Last edited by Charm2017; 10-19-2011 07:23 AM. Reason: url glitch
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | I've been watching this work for a couple of years. There are some pretty cool ideas coming down the pike, too slowly of course, but obtuse thoughts that have the potential to be major break throughs.
I was lecturing at a NYU cancer conference last month, and I met someone that I have worked with from a distance for 5 years on the AAOMS oral cancer task force, Dr. Brian Schmidt. When I listen to this guy speak, I really get how dumb I am about cancers. He explained in really simple terms why oral SCC is so hard to kill. Genetically it actually changes during treatment, and really isn't the same thing at the end it was at the beginning. Which is why chemo drugs only work in many cancers for a short period of time, then become ineffective. Smart cancer find a different route.... (There are some dumb cancers, but not many) The cancer just begins to work in an alternate way. Think of the picture of the flights in the airline magazines showing all the routes a particular airline flies to NY. (There's a zillion lines all over the map) What happens if they stop flying one of the routes? There are about 20 more lines that will still take you there. This is the cancer for dummies version of the idea, that made it so clear to me.
The more we think we have cancer figured out the more we realize we don't. Radiation is the only thing so far to deal with a constantly genetically changing process like cancer. It doesn't care how often or in what ways the cancer changes (like figuring after a short period of time how to work around an EGFR drug in 3-4 months, making the drug that seemed to be working now useless) It is a scorched earth tool, that kills everything - mutated into some derivative or not, and of course plenty of healthy cells at the same time. But it is why something so destructive is still the heavy weapon in most cancers.
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | J's cancer was so dumb...it turned out to be benign. It seems like cancer operates, somewhat, as bacteria behave. In a way, cancer becomes immune to a therapy just as bacteria are becoming resistant to antibiotics. That's why it is so important to a person's (and the rest of the world's) health that he or she finish all the antibiotics prescribed to him or her. Just as radiation destroys everything in its path (cancer cells and healthy tissues and structures) the antibiotic decimates the bacterial population and kills every last bacterium. However, it seems that if the treatment is stopped too soon, the cells (cancer or bacteria) reestablish their presence. They have treatment experience programmed into them and they adapt accordingly. They become harder to treat and harder to cure. Now, if they can just figure out why Human Papillomavirus doesn't behave like a virus...
Last edited by Sandy177; 10-20-2011 12:19 AM.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | [quote=Brian Hill] Genetically it actually changes during treatment, and really isn't the same thing at the end it was at the beginning. Which is why chemo drugs only work in many cancers for a short period of time, then become ineffective. Smart cancer find a different route.... (There are some dumb cancers, but not many) The cancer just begins to work in an alternate way. [/quote]
Wouldn't the smart cancer be the one that DOESN'T kill the host thereby committing suicide itself? Just a thought ...
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
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