| 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 back peddle what I stated earlier based on newly released information, Steve Jobs attempted to control his cancer, during the first nine months with a macrobiotic diet (which, I don't believe, is technically an alternative treatment). People with "regular" pancreatic cancer don't even typically survive that long (6 months being the average). Jobs biographers are now stating that this was AMA and probably cost him his life. They are postulating that had he had the surgery right away, it might have been highly curable. But the wait and the additional "insult" to his body with the liver transplant and immunosupressive drugs, typically used in the procedure, played a substantial role to be sure.
So if you are considering alternative therapy - don't do it.
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 | Gary Your post makes me feel a little better since those "facts" are the ones that prompted my first post. The Associated press is running a story picked up by Washington Post [quote]The book delves into Jobs� decision to delay surgery for nine months after learning in October 2003 that he had a neuroendocrine tumor � a relatively rare type of pancreatic cancer that normally grows more slowly and is therefore more treatable. Instead, he tried a vegan diet, acupuncture, herbal remedies and other treatments he found online, and even consulted a psychic. He also was influenced by a doctor who ran a clinic that advised juice fasts, bowel cleansings and other unproven approaches, the book says, before finally having surgery in July 2004. Isaacson, quoting Jobs, writes in the book: ��I really didn�t want them to open up my body, so I tried to see if a few other things would work,� he told me years later with a hint of regret.�[/quote] Full article here Jobs delayed cancer surgery True believers do think Macrobiotics is an alternative TX. Wikipedia discusses Macrobiotics in a more neutral tone than I would since I am biased having been on a super strict macrobiotic diet (seaweed burgers anyone?) my entire third year of law school and did not notice any health improvements [quote]Medical professionals do not consider that there is evidence that a macrobiotic diet is useful as a cure for cancer. The American Cancer Society strongly urges people with cancer not to use a dietary program as an exclusive or primary means of treatment, and many long-term practitioners of the diet, including Michio Kushi's wife, Aveline, and daughter Lilly, died of cancer. Michio Kushi himself developed cancer and in 2004 had a tumor removed surgically from his intestines. Some macrobiotic teachers who followed more vegan type macrobiotic diets also passed away from cancer including Luchi Baranda, Patrick McCarty, Cecil Levin, Bonnie Kramer, and Murray Synder. Roel Van Duijn reported in the Dutch national newspaper Trouw on September 5, 1998, and later in the quarterly Skepter of the Dutch organization Skepsis that following advice of a macrobiotic counselor over conventional medical treatments resulted in the death of his wife.[/quote] For those who weren't part of the counterculture, Michio Kushi was a best-selling author of the Cancer Prevention Diet and the acknowledged leader of the international macrobiotic community. We all know who Steve Jobs was. Dr Google is dangerous for cancer patients.
Last edited by Charm2017; 10-21-2011 12:50 PM. Reason: typos
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: 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 | The more I read about this case, the angrier I get.
By way of a disclaimer my "nearly" mother-in-law died in October last year after being told in March that she had neuroendocrine carcinoma and that an operation would be best delayed as the tumour is a typically slow growing type and she could die of old age before the cancer got her. The doctors recommended a wait and see approach with another scan in 6 months to gauage the tumour's growth rate. Treatment, likely surgery, would be determined from there. She had the scans just before she went into hospice and died about 8 weeks later.
My point? How do we know that Steve Jobs delay was not initially recommended (or at least condoned) by his doctors given that he had a treatable neuroendocrine tumour (which is code for slow growing or well differentiated)
Whilst I agree wholeheartedly with the concept that alternative treatment doesn't work, I think holding Steven Jobs up as the poster boy is wrong.
The speculation besmirches the reputation of a genius who will go down in history as one of the top 10 visionaries who changed our lives. Or worse, the quacks will hold him up as the person with the vision to explore and undergo alternative treatments. This is what makes me so mad.
PS Let us not confuse lifestyle choices with alternative treatments.
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
| | | | 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 | Klo
Our "knowledge" of Steve Jobs is limited to the news reports which may be sensationalized and the biography which is supposedly authorized by Steve Jobs and contains interviews. So far both of these indicate that not only his doctors but even board members of Apple with medical backgrounds all urged him to get the surgery without delay. So that's how we "know".
I did post the SBM article that questions whether the delay did have an negative effect. The new information about going to a quack doctor is disturbing.
And as long as we are talking about lifestyles As far as besmirching Job's reputation, that was done soon after his death with the news of his not only abandoning his pregnant long time girl friend to chase Joan Baez but then to falsely swear under oath that he was infertile in a futile attempt to deny he was the father. The mother and daughter were reduced to welfare until a court intervened and made Jobs accept his responsibility as a Father. IMO that story is far worse than false hope in quack remedies. I can understand that but not turning your back on your child. He did "make it up" to her by sending her to Harvard after letting her live with his family while she was a teenager.
Not of this changes your righteous anger about the terrible advice that poor woman received. My understanding however is that pancreatic cancer is never a candidate for watchful waiting. I have not seen any reports suggesting otherwise.
Celebrities have a tremendous impact on the public's perception of health. You need only see the rise in childhood diseases due to Jenny McCarthy's anti vaccine nonsense to see the danger in an increase in public perception that it's okay to avoid real medical TX for cancer. Sorry for your loss. 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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Klo After re-reading my post, I wanted to make clear that I agree with you that Jobs was a visionary and a genius who IMO saved the music industry with Itunes plus with the Iphone and Ipad transformed computing. Don't forget Pixar and movies. slight time correction: Jobs was 23 when daughter Lisa was born but didn't date Joan Baez until he was 27 (Joan was 41). I'm relieved Joan was not a homewrecker because I used to have a major crush on her while in the Seminary. And Jobs started treating Lisa like his child when she was 10. Today's Washington Post story on Job's biography gave more details including a quote that he only truly loved two women in his life (and Lisa's mother was not named as one) He was a complex guy. To his credit, he says that he authorized this bio and gave the interviews because [quote]�I wanted my kids to know me,� he told Isaacson shortly before he died, according to the new book. �I wasn�t always there for them, and I wanted them to know why and to understand what I did.� [/quote] Interesting summary Steve Jobs opens up about adoption, loves, faith in new biography 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: 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 | Sorry Charm,
I wasn't mad at your post, was mad at the craziness going on in the media. Your post was about highlighting delay and alternative treatments as a poor choice with which I totally agree
this bit that got me going was the quote from the researcher who suggested it was a mild form of cancer. I would have accepted this if he had been some ignorant journalist, but as a scientist, he should have been more careful with his words. He should have said slow growing. There is no such thing as a mild cancer (assuming it is malignant)in my opinion.
Karen PS "Despicable Me" is my all time favourite movie and shifted "Dirty Dancing" off its 30 odd year pedestal
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
| | | | 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 | According to more stuff surfacing, it may have been delays by Jobs that were to blame. But given how destructive this cancer is, surgery early, surgery late, the outcome might have just been the same. http://www.huffingtonpost.com/2011/10/20/steve-jobs-biography-obama_n_1022786.html?ref=mostpopular
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 | IMO Steve Jobs last act of genius was to demonstrate the futility and dangers of alternative treatments, as clearly chronicled by his authorized biographer (who had unrestricted access and no restrictions on his research and questions).
Lots of geniuses wacked out in the ends of their lives. I don't think that Jobs did though - he did his due diligence and that is the nature of the internet. How many times have we had people here looking, quite desperately, for an alternative to radiation, chemo and/or surgery. We certainly can empathize with people in that situation. And how many pancreatic cancer forums are there for people (like on on this forum to say "don't go there)?
Quack medical treatments are a 38 billion dollar industry and obviously they have some very convincing testimonies to bilk that much money from people. Sadly, some of the biggest proponents of alternative medicine are people with MD or Doctor in their titles.
Like many of you I had people hounding me to take Noni juice, buy an Alpine Ozone generator, vitamins, you name it. Everyone wants a magic bullet with minimal suffering and side effects but as of this writing there are none that have passed of test of scientific scrutiny. If you have never visited Quackwatch - do so now and read carefully the special page to cancer patients.
Conventional medicine is still your only hope of survival
Just for the record, I spent extensive time in China touring various hospitals, from gleaming stainless and marble structures to dilapidated "common people" hospitals with ruts worn in the floors. Their socialist medical system has different tiers for the status of the people. Engineers and CEO's go to the stainless steel and marble places and you get the drift. Welcome to Obamacare. But I digress - the point here is that whatever the tier of the facility, they ALL practiced conventional western medicine, radiation oncology, modern scanning modalities were in evidence at all of them. Herbal medicine was offered only as an adjunctive treatment.
I have always been a big fan of Apple. Owned an Apple II (s/n 000828). purchased in 1977 for over $2K (more than the MacBook Pro I am writing this on. I have 1/2 dozen iPods, 2 iPads, a MacBook and 3 iPhones. I met the Woz at the US Festival in 1982 in San Bernadino (Herbie Hancock and Robert Moog as well). I have always been a big supporter of Apple (and they are in my "back yard" as well".
Steve Jobs has changed our lives in ways that only history will tell but I can imagine it will be quite favorable to him and deservedly so. A true leader alway has the responsibility to groom and cultivate his replacement so I can imagine that Apple will remain successful for many years to come.
Last edited by Gary; 10-22-2011 06:03 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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Oh and the commentary that I heard on Fox, from their medical expert, was that this was a highly treatable form of pancreatic cancer, not that it was a "mild" form (that sounds like and early GMA or MSNBC comment). There is NO mild form of pancreatic cancer. I have been to several funerals of close friends who died from it, all within 6 months and all way ahead of their time. This is the most deadly cancer there is with a typical 5%, 5 year survival rate for the most common form. Evreyone I know personally died within 6 months or less of diagnosis and in excruciating pain. This is one cancer that the standard Fentanyl dose rate is 500 mcg (the patch is 4"x4") and there is NOTHING stronger than that... except general anesthesia.
And a side story about the so called macrobiotic diet - during the Vietnam war a friend of mine beat the draft by going on a macrobiotic diet - he was rejected by the draft board for being "excessively skinny".
Last edited by Gary; 10-22-2011 06:16 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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | I watched an interview of his biographer. The way he presented his statements about Jobs' foray into alternative treatments was salacious. IMO, his attitude made him less credible as a biographer.
My grandmother died at age 56 of pancreatic cancer which was before I was born. By the time they found it, mets were everywhere. From what I recall family members saying--it was horrible but not for long. A friend's husband died in his late 30's of pancreatic cancer. He had it about four years and was treated with an injectible med he self-administered. When the medication would no longer work for him, he died. I'm not sure which was worse.
Last edited by Sandy177; 10-23-2011 12:46 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.
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