Computer Genius, Steve Jobs Died of Pancreatic Cancer – cancer patients can learn from his experience

Steve Jobs was born February 24, 1955, to two University of Wisconsin graduate students who gave him up for adoption. Smart but directionless, Jobs experimented with different pursuits before starting Apple Computers with Stephen Wozniak in the Jobs’ family garage. Apple’s revolutionary products, which include the iPod, iPhone and iPad, are now seen as dictating the evolution of modern technology (http://www.biography.com/people/steve-jobs-9354805).

In October 2003, while performing a routine abdominal scan, doctors discovered a tumor growing in his pancreas.  Eight years later, on 6 October 2011, Steve Jobs died. He was 56 years old. In a brief statement, Apple announced the death but did not say where he died.  You can read his full biography in this website: http://allaboutstevejobs.com/bio/long/01.html

I surfed the net to know more about his cancer. Everyone else is more engrossed with his inventions and successes. No much is being said about his medical history –  except for some bits and pieces about his health here and there.  I believe cancer patients throughout the world would want to know how he managed to “live well” after his cancer diagnosis.

His Health Problems

In a June 2005 commencement address at Stanford University Steve Jobs talked about his pancreatic cancer. In his speech, Jobs, CEO and co-founder of Apple and Pixar, urges us to pursue our dreams and see the opportunities in life’s setbacks — including death itself. It is a very good video – everyone should watch this!

 

http://www.ted.com/talks/steve_jobs_how_to_live_before_you_die.html

or:  http://www.youtube.com/watch?v=UF8uR6Z6KLc

or: http://www.buzzfeed.com/gavon/steve-jobs-discusses-his-cancer-and-facing-death

This is the transcript of a part of his speech. 

My third story is about death

When I was 17, I read a quote that went something like: “If you live each day as if it was your last, someday you’ll most certainly be right.” It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: “If today were the last day of my life, would I want to do what I am about to do today?” And whenever the answer has been “No” for too many days in a row, I know I need to change something.

Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure – these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.

About a year ago I was diagnosed with cancer. I had a scan at 7:30 in the morning, and it clearly showed a tumor on my pancreas. I didn’t even know what a pancreas was. The doctors told me this was almost certainly a type of cancer that is incurable, and that I should expect to live no longer than three to six months. My doctor advised me to go home and get my affairs in order, which is doctor’s code for prepare to die. It means to try to tell your kids everything you thought you’d have the next 10 years to tell them in just a few months. It means to make sure everything is buttoned up so that it will be as easy as possible for your family. It means to say your goodbyes.

I lived with that diagnosis all day. Later that evening I had a biopsy, where they stuck an endoscope down my throat, through my stomach and into my intestines, put a needle into my pancreas and got a few cells from the tumor. I was sedated, but my wife, who was there, told me that when they viewed the cells under a microscope the doctors started crying because it turned out to be a very rare form of pancreatic cancer that is curable with surgery. I had the surgery and I’m fine now.

This was the closest I’ve been to facing death, and I hope it’s the closest I get for a few more decades. Having lived through it, I can now say this to you with a bit more certainty than when death was a useful but purely intellectual concept:

No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

When I was young, there was an amazing publication called The Whole Earth Catalog, which was one of the bibles of my generation. It was created by a fellow named Stewart Brand not far from here in Menlo Park, and he brought it to life with his poetic touch. This was in the late 1960′s, before personal computers and desktop publishing, so it was all made with typewriters, scissors and Polaroid cameras. It was sort of like Google in paperback form, 35 years before Google came along: it was idealistic, and overflowing with neat tools and great notions.

Stewart and his team put out several issues of The Whole Earth Catalog, and then when it had run its course, they put out a final issue. It was the mid-1970s, and I was your age. On the back cover of their final issue was a photograph of an early morning country road, the kind you might find yourself hitchhiking on if you were so adventurous. Beneath it were the words: “Stay Hungry. Stay Foolish.” It was their farewell message as they signed off. Stay Hungry. Stay Foolish. And I have always wished that for myself. And now, as you graduate to begin anew, I wish that for you. Stay Hungry. Stay Foolish.

What kind of cancer did Steve Jobs have? (http://blisstree.com/live/what-kind-of-cancer-did-steve-jobs-have-795/)  In a message to his employees at the time, Steve explained:  I had a very rare form of pancreatic cancer called an islet cell neuroendocrine tumor, which represents about 1 percent of the total cases of pancreatic cancer diagnosed each year, and can be cured by surgical removal if diagnosed in time (mine was). I will not require any chemotherapy or radiation treatments.

According to the University of California Department of Surgery, Islet cell neuroendocrine tumors are rare. Only 2,500 people are diagnosed with them per year in the U.S. –so researchers don’t know nearly as much about the tumors as other more common forms of cancer. But in general, they are tumors that form out of the endocrine, or hormone-producing, cells in the pancreas.

How difficult is it to treat, and what are the survival rates?  The doctors initially told him he only had about three to six months to live. Steve far outlived his doctors’ initial prognosis, but the reality is that islet cell neuroendocrine tumors are malignant, which means they’re fatal for 90% of patients if left untreated.

 Did his cancer come back? The rarity of Jobs’ cancer left room for plenty of room for speculation about the likelihood of recurrence. In January of 2009, Jobs announced that he was being treated for a hormone imbalance, and later received a liver transplant.

More details of his cancer

Jobs was considering not having the surgery at all. A Buddhist and vegetarian, the Apple CEO was skeptical of mainstream medicine. Jobs decided to employ alternative methods to treat his pancreatic cancer, hoping to avoid the operation through a special diet. For nine months Jobs pursued this approach.  In the end, Jobs had the surgery  on Saturday, July 31, 2004, at Stanford University Medical Center.

In an article, The trouble with Steve Jobs, Peter Elkind wrote, http://money.cnn.com/2008/03/02/news/companies/elkind_jobs.fortune/index.htm,

Jobs sought instead to treat his tumor with a special diet while launching a lengthy exploration of alternative approaches. “The odd thing is, for us what seemed like an alternative type of thing, for him is normal. It’s not out of the ordinary for Steve ” says one person familiar with the situation.

By the standards of medical science, it was an open-and-shut case: There was no serious alternative to surgery. “Surgery is the only treatment modality that can result in cure,” Dr. Jeffrey Norton, chief of surgical oncology at Stanford, wrote in a 2006 medical journal article about this kind of pancreatic cancer.

The case seemed closed for a while, before it surprisingly resurfaced some three years later, in 2008. He obviously had lost weight in a substantial and even frightening way.

Steven made a personal announcement on 5 January 2009:  As many of you know, I have been losing weight throughout 2008. The reason has been a mystery to me and my doctors. A few weeks ago, I decided that getting to the root cause of this and reversing it needed to become my #1 priority. Fortunately, after further testing, my doctors think they have found the cause—a hormone imbalance that has been “robbing” me of the proteins my body needs to be healthy. Sophisticated blood tests have confirmed this diagnosis. Nine days later, in an email to all Apple employees he wrote: During the past week I have learned that my health-related issues are more complex than I originally thought.

In April 2009 Steve underwent a liver transplant. The transplant took place at the Methodist University Hospital in Memphis, Tennessee, one of the nation’s leading center for such surgery. The transplant worked, and Steve went back to Apple in late June 2009.

In an article on 18 January 20ll, Steve Jobs went to Switzerland in search of cancer treatment, Doron Levin wrote, ( http://tech.fortune.cnn.com/2011/01/18/steve-jobs-went-to-switzerland-in-search-of-cancer-treatment) How sick was he? Fortune reported Jobs also took an unpublicized flight to Switzerland to undergo an unusual radiological treatment at the University of Basel for neuroendocrine cancer.

In an article on 5 October 2011,Jobs’s Unorthodox Treatment, Sharon Begley, wrote, (http://www.thedailybeast.com/articles/2011/10/05/steve-jobs-dies-his-unorthodox-treatment-for-neuroendocrine-cancer.html),  Although cancer of the pancreas has a terrible prognosis—half of all patients with locally advanced pancreatic cancer die within 10 months of the diagnosis; half of those in whom it has metastasized die within six months. Unlike pancreatic cancer, with neuroendocrine cancer “if you catch it early, there is a real potential for cure,” says cancer surgeon Joseph Kim of City of Hope, a comprehensive cancer center in California. In part, that is because neuroendocrine cancers tend to be quite slow growing, or indolent. This kind of cancer can be so indolent that patients often die with it than from it. Although an estimated 2,000 to 3,000 people in the U.S. are diagnosed every year with neuroendocrine tumors of the pancreas, autopsies find the disease in hundreds more—people who were apparently not harmed by this very slow-growing cancer.

But Jobs’s was not such a simple case. He underwent an operation called a modified Whipple procedure, or a pancreatoduodenectomy. The surgery removes the right side of the pancreas, the gallbladder, and parts of the stomach, bile duct, and small intestine. The fact that so much more than the pancreas itself had to be removed suggests that Jobs’s cancer had spread beyond the pancreas. The cancer might have already spread by the time it was discovered in 2003. Alternatively, the cancer could have spread during the nine months that Jobs was experimenting with nonstandard therapies.

Within five years, it was clear that Jobs was not cured. He underwent a liver transplant at Methodist University Hospital in Memphis in 2009. That strongly suggests the cancer had spread beyond the digestive system that was the focus of the surgery and into the organ that is one of the most common sites of metastasis.

Swapping out a cancer-ridden liver for a new one may buy some time, but not much. It can even be counterproductive. Transplant patients need massive doses of immune-suppressing drugs to keep their bodies from rejecting the foreign organ. A more standard treatment is to remove only those parts of the liver that contain malignant cells.

Jobs was relieved that, as he put it in that 2004 email, he did “not require any chemotherapy or radiation treatments.” He took that as a sign that the surgery “got it all,” as every cancer patient desperately wishes to hear. In fact, any surgeons who say they “got it all” should be slapped: no existing technology can detect micrometastases, let alone a few million rogue malignant cells floating in the bloodstream or lymph fluid and just waiting to invade some vital organ.

One of the few bright spots when it comes to neuroendocrine cancer was the Food and Drug Administration’s decision, in May 2011, to approve two new drugs against the disease. One, called Sutent, from Pfizer, was previously approved for the treatment of kidney cancer. The other newly approved drug, Afinitor,  from Novartis (See CA Care experience with these two drugs at the end of this article!).

Marilynn Marchione  of the Associated Press, (http://www.ajc.com/health/doctors-say-cancer-likely-1195337.html)  in Doctors say cancer likely killed Steve Jobs, wrote, Steve Jobs managed to live more than seven years with a rare form of pancreatic cancer that grows more slowly than the common kind. But his need for a liver transplant two years ago was a bad sign that his troubles with the disease probably were not over.

Medical experts unconnected with his care say Jobs most likely needed the transplant because his cancer came back or spread. They said his death could have been from cancer, the new liver not working, or complications from immune-suppressing medicines to prevent organ rejection. A liver transplant can cure Jobs’ type of cancer, but “if it were to come back, it’s usually in one to two years,” said Dr. Michael Pishvaian, a gastrointestinal cancer specialist at Georgetown University’s Lombardi Comprehensive Cancer Center.

Jobs would not say why the transplant was needed, though doctors said spread of his cancer to the liver was the likely explanation. Usually transplants aren’t done for people with cancer, but “there is some support for the idea that a liver transplant can be curative” for a neuroendocrine tumor as long as the cancer has not spread beyond the liver. Average survival for people with neuroendocrine tumors that have spread is seven to eight years, and some patients have survived 20 to 30 years, said Dr. Martin Heslin, cancer surgery chief at Vanderbilt University. It was not to be for Jobs.

Alice Part, in her article – The Pancreatic Cancer that Killed Steve Jobs, (http://healthland.time.com/2011/10/05/the-pancreatic-cancer-that-killed-steve-jobs/#ixzz1ZyGUwyUf)  wrote,  Pancreatic cancer is one of the faster spreading cancers; only about 4% of patients can expect to survive five years after their diagnosis. Each year, about 44,000 new cases are diagnosed in the U.S., and 37,000 people die of the disease.

According to experts, Jobs’ was an uphill medical battle. “He not only had cancer, he was battling the immune suppression after the liver transplant.  Most patients who receive liver transplants survive about two years after the surgery.

Because of the poor prognosis of pancreatic cancer, many patients elect to try alternative therapies, including a popular therapy known as the Gonzalez regimen, which involves fighting pancreatic tumors with pancreatic enzymes. Patients on the Gonzalez regimen also take a large number of nutritional supplements, including vitamins and minerals such as magnesium citrate, along with coffee enemas performed twice a day.

The treatment’s developer, Dr. Nicholas Gonzalez of New York, has claimed that the use of pancreatic enzymes is a powerful way to suppress the growth of advanced pancreatic cancer cells. Jobs is not reported to have tried the Gonzalez regimen, but he is known to have suscribed to alternative therapy. Whether these treatments helped to extend Jobs’ life or improve the quality of his last days isn’t clear. But cancer experts expressed surprise that Jobs survived as long as he did, continuing to fight his disease. Other pancreatic cancer patients typically aren’t as fortunate.

Watch these videos in the Voice of America website of 30 August 2011, (http://www.voanews.com/english/news/usa/Jobs-Pancreatic-Cancer-Led-to-Numerous-Health-Issues-128670148.html)   Jobs’ Pancreatic Cancer Led to Other Health Issues.  Oncologists say pancreatic cancer is hard to treat because it is difficult to diagnose. … since the early stages have no visible symptoms. Dr. Khaled el-Shami, a cancer specialist at George Washington University Medical Center in Washington, D.C said, “Neuroendocrine tumors tend to spread from pancreas to the liver.  Liver transplant is a radical way of removing cancer in the liver.” But el-Shami warns a transplant is not a guaranteed cure. “It’s a balance between removing a big chunk of cancer in the liver and the risk of having a weakened immune system, which can encourage not only the original cancer to come back but also emergence of other cancers.”

Lisa Krieger wrote an article, Rarity of Steve Jobs’ cancer and treatment provides few predictions, few options (http://www.mercurynews.com/health/ci_18758697). She said, Like everything else about him, Steve Jobs’ medical history has been singular — an uncommon treatment for a very rare cancer — so it’s tough to predict his fate. But experts suggest that he’s run out of good fixes. If the cancer has returned, he’s not a good candidate for a second transplant. Drugs can prolong survival, but they don’t cure. The average three-year survival rate for people with Jobs’ condition who receive a liver transplant is about 70 percent, said Dr. William C. Chapman, chief of the Abdominal Transplantation Section at Washington University School of Medicine in St. Louis. By five years, about half are still alive, said Chapman and Dr. Simon Lo, director of pancreatic and biliary diseases at Cedars-Sinai Medical Center in Los Angeles. But there’s not much data — and there’s hardly any information at all — for 10-year survivors.

“In general, it’s pretty uncommon to perform a transplant for recurrence of malignancy,” Chapman said. That’s because if it has returned to the liver, it’s more likely to return to other places, too”. “When you’re dealing with a cancer that has metastasized, it means it might be hiding somewhere else in the belly,” Lo said. And immune-suppressing drugs reduce resistance, he said, “so there is always worry that the cancer could be encouraged to grow.”

Marilyn Linton wrote in the Toronto Sun (http://www.torontosun.com/2011/09/09/the-cancer-that-plagues-steve-jobs),  The carcinoid neuroendocrine tumours (CNETs), or alternatively called neuroendocrine tumors (NETs) – the same cancer that has struck Jobs is a malignancy of a unique system of the body.  Most worrisome is the fact that these tumours can be difficult to spot.  If doctors are aware of it, they may think of it and diagnose it more quickly – something all of us wish could have happened. Most of us were diagnosed after the tumour metastasized which, in the end, brings different challenges and prognosis.”

Liz Szabo of USA Today, (http://yourlife.usatoday.com/health/medical/cancer/story/2011-08-24/Apple-CEO-Steve-Jobs-resigns-after-battling-pancreatic-cancer/50127460/1) wrote,  Steve Jobs has battled a rare form of pancreatic cancer for years, undergoing a series of aggressive treatments, including a liver transplant, and surviving longer than many others with the disease. Patients with the most common form of pancreatic cancer often live less than a year. Neuroendocrine tumors typically grow much more slowly, allowing patients to live at least two or three years. Unless the disease is completely eradicated, however, the cancer eventually takes a turn for the worse, growing much more quickly. If the liver begins to fail, however, “people can go downhill pretty quickly. When you hit the wall, you hit the wall.”

Patients who receive organ transplants must take drugs to prevent the body from rejecting the new organ. But because these drugs also suppress the immune system, they can allow the original cancer to re-emerge and attack either the new liver or other organs. In rare cases, a liver transplant may cure the patient’s cancer, if it hasn’t spread around the body,

Daniel DeNoon of WebMD Health news wrote ( http://www.webmd.com/cancer/pancreatic-cancer/news/20110825/faq-steve-jobs-pancreatic-cancer),  If Jobs had suffered the most common form of pancreatic cancer, adenocarcinoma, the chances are he would have died soon after his 2003 diagnosis. But as Jobs later revealed, he had an unusual form of pancreatic cancer known as a neuroendocrine tumor or islet cell carcinoma.

What is known about this kind of cancer? Can it be cured? What if it comes back? WebMD answers these and other questions.

What Is a Neuroendocrine Tumor/Islet Cell Carcinoma?  When doctors discover that a patient has pancreatic cancer, the outlook usually is grim. But once in a while — about 200 to 1,000 times a year in the U.S. — it turns out to be an islet cell carcinoma. But 90% of these tumors are malignant, meaning that they eventually are fatal if left untreated.

Can Neuroendocrine Tumors/Islet Cell Carcinomas Be Cured?  The first choice of treatment for islet cell carcinoma is surgery, says David Levi, MD, professor of clinical surgery at the University of Miami Miller School of Medicine.”If it can be cured with surgery we try for that,” Levi says. “If not there are options: chemotherapy and a number of other options to try to control this tumor. Some of these cancers are not curable, but patients can do well for years and years.”

Why Did Steve Jobs Have a Liver Transplant? Although it’s now known that Jobs received a liver transplant in Tennessee, it’s not clear why. However, Levi says that a small number of patients with islet cell carcinoma may undergo liver transplant if their cancer has spread to the liver but does not appear to have spread elsewhere. It’s not a procedure for people who may have cancer remaining in their bodies. That’s because transplant patients must stay on immune-suppressing anti-rejection drugs for the rest of their lives. Without a functioning immune system, remaining cancer cells grow uncontrollably.

“The cancer can recur after liver transplant. When it does recur, it carries a pretty poor prognosis and ultimately is the cause of death,” Levi says.” We are limited in what we can do. The patient is immune suppressed. This usually means the cancer is aggressive, and once it recurs it usually is not curable.”

Facing Reality

Jobs outlived that initial prognosis by a lot, but at just 56, Jobs death still came young (the average life expectancy for American men is about 77 years old). As of now, there are few clues as to how his treatment or lifestyle really impacted his longevity post-surgery, but for patients who are diagnosed with the same type of cancer, the best hope of survival is to catch and treat the cancer early, and maintain optimal health through diet, exercise and lifestyle (http://blisstree.com/live/what-kind-of-cancer-did-steve-jobs-have-795/).

Now Jobs reminds us all of a harsh reality: even with access to the very best medical care, and even with Jobs’ reality distortion field, cancer survivors can’t always remain fine forever. And life’s change agent, as we all know and we all don’t like to remember, is merciless.

Matthew Herper wrote in  http://www.forbes.com/sites/matthewherper/2011/10/05/steve-jobs-cancer-survivor/

Steve Jobs was another type of survivor: a cancer survivor. And in that role, he was a model for many. Steve Jobs represented the millions of cancer survivors who pursue their dreams, live their lives, and contribute to our world every day. Tonight, sadly, we know the answers. There is finality to the life of Steve Jobs in the physical sense, although his influence will be felt long after his passing.

Comments

It seems be the norm, in the face of total hopelessness, there would be someone who would come and offer you some “magical portions” to try. In this article, one writer mentioned that one ray of hope for Steve Jobs would be the new “magic bullets”,  Sutent and Afinitor. I am not sure if cancer patients need to be optimistic at all. These bullets might just turn out to be fatal bullets – to the patient and not the cancer.

When Suri had exhausted all possible medical treatments (after spending S$300,000 and no more chemo was indicated) her oncologist offered Sutent for her metastatic lung-brain cancer.  She suffered severe side effects ten days after consuming Sutent. Read her story here: https://cancercaremalaysia.com/2011/09/10/lung-brain-cancer-an-impossible-healing-part-3-reflection-and-confession-of-a-husband/

MF (H614) is a 49-year old male. He had kidney cancer and was operated on. The cancer later spread to his lungs. He was on Sutent for one year plus. He suffered heart damage. Red his story here:  https://cancercaremalaysia.com/2011/09/19/kidney-lung-brain-cancer-sutent-heart-damage/

TK826 was a 53-year-old male. He was diagnosed with cancer of the kidney. He received 20 radiation treatments. In spite of the treatment, the tumour grew bigger and spread to his liver, lungs and abdomen. He was started on Sutent in January 2009. He suffered severe side effects and died three months later,  on 30 April 2009. This is his story: https://cancercaremalaysia.com/2011/09/18/sutent-for-advanced-kidney-cancer/

Ray  is a restaurant owner in Indonesia. In December 2007, at the age of 53, he was diagnosed with kidney cancer. He underwent a radical surgery. About seven years later, the cancer recurred in his lungs. Ray was put on Sutent and suffered severe intolerable side effects. Ray stopped taking Sutent.  The oncologist suggested a new oral drug, Afinitor (everolimus).  Ray suffered similar side effects from taking Afinitor – ulcerations of his mouth and itchiness of his head, etc. Read more of this story: https://cancercaremalaysia.com/2011/09/18/everolimus-for-kidney-cancer-metastatised-to-lungs/

Our experience at CA Care tells that there is no cure for pancreatic cancer. For example, read this story: https://cancercaremalaysia.com/2011/09/08/pancreatic-cancer-no-cure-after-surgery-gemzar-and-tcm-herbs/

Many patients who had surgery and chemotherapy died soon after the treatments. The result thus far for pancreatic cancer is dismal indeed. I must say it is an achievement that Steve Job was able to survive eight years battling with his pancreatic cancer. That’s a great achievement indeed.

What Steven Jobs said at the commencement address at Sanford University ought to be a great lesson for many of us.  Death… is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. It is important to realize that no one lives forever. Ponder seriously once again what Jobs said, Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition … Everything else is secondary.

Let me close by quoting Dr. Bernie Siegel (in his book, Peace, Love & Healing). It is important that we realize that we can never cure everything. We will never find … cures for all diseases. Dying can be a healing, ending a full, rich life for someone who is tired and sore and in need of rest. Facing death is often the catalyst that enables people to reach out for what they want. It makes us face up to the meaning of our existence. Illness and death are not failures. It is how we face up to our illnesses and how we take on the challenge of our mortality that determine whether we are successes or failures. No matter how sick we are or how close to death, as long as we are alive we have the chance to make something of our lives. Those who rise to the occasion will find that no matter what the outcome of the struggles, they have created something beautiful.

In this regards, Steve Jobs had lived to create something beautiful for our world.

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