Ronny Allan is an award-winning international patient leader advocating for Neuroendocrine Cancer and cancer patients generally. Check out his Facebook pages and twitter accounts.
Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That’s interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported.
There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more.
I’ve mentioned Steve Jobs a few times previously, mainly in my blog The Human Anatomy of Neuroendocrine Cancer. I wrote that blog when I was frustrated about the constant misreporting of Neuroendocrine Cancer as other types of cancer. Others included Nick Robinson (see blog The Devil is in the Detail) and Wilko Johnson (The Ecstasy of Wilko Johnson). I’ve also suggested in my blog ‘Every Day is NET Cancer Day’ that we need high-profile patient Ambassadors and despite his death, Steve Jobs would have been quite a catch, had he been willing. To add insult to injury, the 2018 death of Aretha Franklin was going the same way until intervention by the NET Research Foundation, although the social media archives were flooded with claims of pancreatic cancer.
A lot has been written about Steve’s cancer experience and much of it is full of ‘what ifs’. However, I’d like to focus on the facts that are known and we can be almost certain about. That said, the precise detail that we (as NET patients) might want, is probably only to be found in Steve Jobs’s medical documents. Many people say that Steve Jobs had a right to personal privacy and I agree, nothing I put here isn’t already in the public domain.
Diagnosis
How was it found? In 2003, Steve was having a CT scan to examine his kidneys and ureter, as he had developed recurrent kidney stones beginning in the late 1990s. A suspicious lesion was spotted on his pancreas. To cut a long story short, he eventually had more specialist scans and then a biopsy which diagnosed a type of Neuroendocrine Tumour. There are many mentions of Insulinoma, a pNET which is reported to have a 10% malignancy rate (ISI Book – Woltering et al). It isn’t clear whether Steve had any presentational symptoms of an Insulinoma at this point (i.e. hypoglycemia). There is also some chatter online about his tumour being a Glucagonoma (another type of pNET).
Initial Treatment
Steve initially tried alternative medicine before having surgery 9 months after diagnosis. There are reports of his medical team urging surgery earlier and his biographer stated that Steve had later regretted this delay. One of his Doctors is reported to have said “Steve was a very thoughtful person. In deciding whether or not to have major surgery, and when, he spent a few months consulting with a number of physicians and scientists worldwide as well as his team of superb physicians. It was his decision to do this”. He is reported to have gone on to have a ‘Whipple’ type operation in 2004. It was only then, that his condition was made public. During that operation, 3 lesions were reported on his liver.
Ongoing Treatment and Surveillance
Most NET patients enter this phase after their initial treatment, it’s also the period where you learn about the cancer and how best to live with it. There’s not much written about Jobs’ illness between his surgery and his liver transplant but my research uncovered a useful timeline from Bloomberg and other sources:
June 12, 2005: Jobs talks about his fight with cancer during a commencement speech at Stanford University. He says he was diagnosed about a year earlier and that doctors told him he wouldn’t live longer than six months. The cancer turned out to be a form that was treatable with surgery, “and I’m fine now,” he says. Source Bloomberg. {Author’s note: an indication he had been told, or his doctors knew, it was a Neuroendocrine Tumor}
January 24, 2006: Walt Disney chief executive Bob Iger knew early on that Steve Jobs’s cancer had returned and kept it a secret before it became public knowledge, a new biography of Apple’s late chief executive reveals. The day the deal was officially announced, Mr Iger said he was at Pixar’s headquarters for the ceremony when Jobs asked to go for a private walk. On a secluded part of the Californian campus Jobs put his arm around Mr Iger’s shoulder and revealed his cancer was back. “Frankly, they tell me I’ve got a 50-50 chance of living five years,” the Disney CEO quoted Jobs as saying.
2007: Not much out there except that he was busy launching what might be regarded as Apple’s most successful and iconic product ever – the iPhone.
June 9, 2008: Jobs, while introducing the iPhone 3G at Apple’s developers’ conference, appears thinner and frail. The company blames a “common bug.”
July 21, 2008: Responding to concerns about Jobs’s appearance, Apple says he has no plans to leave the company and that his health is a private matter. Investors aren’t reassured, and the shares fall 10 percent.
July 23, 2008: The New York Times reports that Jobs has been telling associates and Apple’s board he is cancer-free. Jobs had a surgical procedure earlier in the year to address a problem that contributed to his weight loss, the newspaper reports, citing unnamed people close to the executive. The shares climb 2.6 percent.
July 26, 2008: New York Times columnist Joe Nocera writes that he spoke two days earlier on the phone with Jobs, who said his health problems weren’t life-threatening. Jobs declines to go on the record about the nature of his ailment.
Sept. 9, 2008: Jobs, introducing new iPod media players at an event in San Francisco, still looks thin. “Reports of my death are greatly exaggerated,” Jobs jokes. Munster says that while the CEO’s appearance is unchanged since June, “Just the fact that Steve Jobs was up there was a positive.”
Oct. 3, 2008: A posting on CNN’s citizen journalist Web site, called iReport.com, says Jobs has been rushed to the hospital after a “major heart attack.” The shares fall 5.4pc. The stock rebounds after Apple says the report is false.
Dec. 16, 2008: Apple says that Jobs won’t be giving his usual speech at the Macworld conference, renewing concerns about his health. Jobs had used the forum to introduce new products for 11 straight years.
Jan. 5, 2009: Jobs says he is suffering from a hormone imbalance, causing him to lose weight. Jobs vows to remain CEO during treatment. “The remedy for this nutritional problem is relatively simple and straightforward,” Jobs says in an open letter.
Jan. 14, 2009: Jobs gives up day-to-day operations to Cook until June, saying his health problems are more complex than originally thought. Jobs says he will remain involved in major strategic decisions. “I look forward to seeing all of you this summer,” he says in a letter to employees.
By this stage, his cancer is already starting to take its toll on how he looks.
The disease takes its toll over the years
Liver Transplant 2009
It is common knowledge that Jobs had a liver transplant in 2009 in Tennessee (he was on the list in California and Tennessee). In between his Whipple and then, he appears to have lived (and worked) with his disease and it’s consequences. His issues appear to have been exacerbated by his excessive vegan diet/fads and the effects of the Whipple surgery (many of you will be aware of these effects). For example, he would spend weeks eating the same thing and then suddenly change his mind and stop eating it. He’d also go on fasts. His condition immediately prior to the liver transplant was said to be ‘poor’ and losing more weight (he had been noticeably thinner for some time).
He tried to go back to work after the transplant, announcing to this staff “I’m vertical” (read this here)
Did Steve Jobs get ‘experimental’ PRRT?
Jobs took a second medical absence for roughly six months in 2009. It wasn’t until June 20th, two months after the fact, that the Wall Street Journal uncovered the fact that Jobs had undergone a secret liver transplant at Methodist University Hospital in Memphis, Tennessee. However, during that absence, Fortune reported Jobs also took an unpublicized flight to Switzerland to undergo an ‘unusual radiological treatment’ (PRRT) at the University of Basel for neuroendocrine cancer, according to Jerry York, the Apple director who died in March 2010.
Post-Liver Transplant
In 2010, Jobs started to feel sick again. He would lose his appetite and begin to feel pains throughout his body. His doctors would do tests, detect nothing, and reassure him that he still seemed clear. In early November 2010, he was in pain, stopped eating and had to be fed intravenously by a nurse who came to his house. The doctors found no sign of more tumours, and they assumed that this was just another of his periodic cycles of fighting infections and digestive maladies.
Heres’ a great bunch of TV interviews (something Jobs didn’t do very often). “The last few years have reminded me that life is fragile”. Click here (worth watching the whole 10 minutes). His final TV appearance was in June 2011 to the Cupertino City Council about the acquisition of land for their new campus. Worth watching some of it: Click here.
The End
In early 2011, doctors detected the recurrence that was causing these symptoms. Ultimately, he developed liver, bone, and other metastases. He had a further extended leave of absence from his job before stepping down as Apple CEO in Aug, Steve Jobs eventually died 5 Oct 2011.
The last few years have reminded me that life is fragile
The Cancer Legacy of Steve Jobs
Many people openly criticise Steve Jobs for not doing more with his riches to help Neuroendocrine Cancer. However, no-one who criticises him can actually provide evidence that he did not give money to charitable organisations. I suspect they openly criticise him while they use their iPhone or their iPad to get help in their favourite patient online groups.
However, perhaps his son has picked up on this moot point? Read this 2023 announcement here.
Click on the picture to read
References
Notwithstanding the Pancreatic Cancer vs Neuroendocrine Cancer issue, I carried out my research mainly using two articles of the many you can find out there:
A Tumor Is No Clearer in Hindsight. This article comes to similar conclusions than the one above but it’s shorter and easier to read. It’s from the New York times and was written after the dust settled on Jobs’ death (i.e. when more facts were available). There is also input to this article from NET specialists Dr Wolin and Dr Libutti.
“A tumor is no clearer in hindsight” is a good summary on the basis that I would have liked much more detail! During my research, I found many mentions of Insulin as stated above but only one or two mentioning Glucagon, a hormone associated with another pNET type – Glucagonoma. However, looking at this tumor type in the ISI Book (Woltering et al) and the Jobs diagnostic and treatment story, I have some doubts whether this was the precise tumor type. I have some other searches in progress hoping to find something concrete.
“Thinking Differently“ There is no doubt that Steve Jobs was an amazing and very interesting character. You just can’t see Apple being the Apple it is today without his intervention. He was famous for being ‘unconventional’ and ‘thinking different’ and I get that element of his character. I just can’t help thinking that perhaps he should have been more ‘conventional’ with this thinking and approach to treating his cancer. However, we just don’t know what advice he was receiving and what advice he accepted or rejected. As for the ‘Pancreatic Cancer’ thing – I’ve said this before, I believe patients only say or interpret what their doctors say to them in regards cancer type.
“The most famous patient ambassador we never had”. I don’t mean any disrespect by that, I’m just emphasising that we need so much more awareness of our cancer and a high-profile patient could do so much to help in this area. If he was so inclined, Steve would have been a fantastic advocate for Neuroendocrine Cancer and there’s an area where perhaps thinking different might be the way ahead. However, I have a suspicion that very famous people don’t really want to talk about their illness and Steve Jobs might even perceive that as a weakness.
And one more thing ……. you may also find this article useful. It’s titled “And one more thing”
It's made up of nearly 6,000 computer keys. The work, which is almost 7 feet tall and 4 feet wide, was created by Orlando artist Doug Powell, who tracked down discarded keyboards and pried off the individual keys for the project. The process took about 200 hours.
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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
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Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Edited and checked April 2024One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a ‘standard of care’ or
Graphic courtesy of SoBadAss.me (Sam Cleasby) In 2014, Chris and I walked 84 miles along Hadrian’s Wall on the English/Scottish border. It was a fantastic
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I definitely think it had to be an insulinoma. I listened to his biography and he noticed symptoms about 2 decades earlier. (Insulinomas are super slow growers and it would take that amount of time to be big enough to be seen on a CT) he talked about extreme fatigue. And he was always angry and having out bursts. That is a very common sign of someone dealing with low blood sugar. People close to Jobs mentioned in the biography how his outbursts baffled them cause he was such a sensitive soul. And it’s very possible that the reason he never passed out from low sugar was because he was always eating fruit which helps to keep the sugar up.
I have an insulinoma. Mine is more reactive than anything else. Not scan would see my tumor except the gallium 68 dotatate pet scan. And the location is in the portacaval lymph nodes. No other primary is seen. I’ve been pushing hard for removal. Because chronic high insulin levels is super damaging. It makes holes in my blood vessels, causing my body to make lots of cholesterol to patch those holes up. My brain looks like a spray of mini strokes. Normal insulin after eating is 40-112 UIu. Mine was clocked at 780. I made enough insulin to kill me and a few more people. But a genetic change in the insulin receptors is keeping me alive ( that change happened as my insulin levels grew. My amazing body found a way to fight back)
Its so sad Tim Cook never funded research for a cure for what could have saved Steve Jobs life, PNET or NETs in general.. Tim you got what you wanted.. being the head of APPLE.. now be a hero fund the CURE!!
Apple has cured so many problems the gadget area… now fund what really matters.. the Cure for NETs!!
I’m sure Apple is generous in all the causes they support.. EXCEPT FOR THE ONE THAT REALLY MATTERS… PNET!! so so sad and disappointing!
I have a 1cm Neuroendocrine pancreatic tumor. Doctors will not do anything until it is 2cm and not then unless I tell them to. Have been told not to have a whiple due to it being so dangerous. Any thoughts on this. It is still encapsulated. Will not do chemo if it comes to that. Would rather have quality vs quantity of life. Any thoughts on this?
Gary, this is a subject that NET experts discuss all the time. To cut or not to cut is a really difficult question they deal with daily so they revert to their guidelines in many cases. The Whipple is no doubt a big operation and all operations have some danger. Is this your only tumor?
DO NOT have a whipple. I kick myself daily. One might get a tumor removed, but it is my firm belief that it does not have to include a whipple.
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I received my diagnosis formally in the same month Jobs died. I wanted to email my colleagues, rather than leave it to team bosses to decide what to say to them, and in the email I said “Of all the things for me to have in common with the multi-billionaire, world-renowned genius, it had to be his illness”.
Ronnie please call me ASAP cell 802 839 0356. Need your Wisdom and help. My better half Sharon is relly having issues with Diarrhea that causes massive problems with bicarbs and potasium. Fighting for 12 years plus
Steve Jobs lived his life to the end in a way that he thought best. I am saddened though that the Jobs family have not publicly funded research and support in this area. Perhaps they have privately but I have never heard of any large endowments that were Anonymous.
Regardless of Jobs’ personal choice to remain private about his illness, I’ve always thought it would have been a fitting and valuable tribute to his fight against NET cancer if Apple had funded some initiative in his name to help other sufferers.
#Apple – it isn’t too late to do so, even now (in fact now is an excellent opportunity)
I read somewhere that Steve’s decision to have the liver transplant as a form of treatment also contributed to shortening his life. Obviously, he then needed drugs to stop his immune system from rejecting the new liver. With a weakened immune system metastases were able to grow much more quickly. A more conventional approach to treating his liver might have prolonged his life. This argument seems to make logical sense. Do you know of any evidence for it Ronny, or is it just speculation?
Yes, that is speculated in many references including the ones I used in this post. Whether it did have an effect would need medical expert corroboration I suspect. You hardly hear of a NET patient receiving a liver transplant as part of their NET therapy. Suffice to say it is not “conventional’ treatment.
Thank you so much for the very informative information. As a nurse with “maybe a NET “ for 11years I found your articles clarifying.
sorry to hear Sally – you may find this hepful https://ronnyallan.net/2018/09/07/diagnosising-the-undiagnosed/
I definitely think it had to be an insulinoma. I listened to his biography and he noticed symptoms about 2 decades earlier. (Insulinomas are super slow growers and it would take that amount of time to be big enough to be seen on a CT) he talked about extreme fatigue. And he was always angry and having out bursts. That is a very common sign of someone dealing with low blood sugar. People close to Jobs mentioned in the biography how his outbursts baffled them cause he was such a sensitive soul. And it’s very possible that the reason he never passed out from low sugar was because he was always eating fruit which helps to keep the sugar up.
I have an insulinoma. Mine is more reactive than anything else. Not scan would see my tumor except the gallium 68 dotatate pet scan. And the location is in the portacaval lymph nodes. No other primary is seen. I’ve been pushing hard for removal. Because chronic high insulin levels is super damaging. It makes holes in my blood vessels, causing my body to make lots of cholesterol to patch those holes up. My brain looks like a spray of mini strokes. Normal insulin after eating is 40-112 UIu. Mine was clocked at 780. I made enough insulin to kill me and a few more people. But a genetic change in the insulin receptors is keeping me alive ( that change happened as my insulin levels grew. My amazing body found a way to fight back)
yes agree most likely insulinoma and that is what has been mostly reported. Good luck with your treatment etc
Its so sad Tim Cook never funded research for a cure for what could have saved Steve Jobs life, PNET or NETs in general.. Tim you got what you wanted.. being the head of APPLE.. now be a hero fund the CURE!!
Apple has cured so many problems the gadget area… now fund what really matters.. the Cure for NETs!!
I’m sure Apple is generous in all the causes they support.. EXCEPT FOR THE ONE THAT REALLY MATTERS… PNET!! so so sad and disappointing!
they wouldn’t miss the money in their trillion dollar company!
Exactly and I couldn’t agree more..
I have a 1cm Neuroendocrine pancreatic tumor. Doctors will not do anything until it is 2cm and not then unless I tell them to. Have been told not to have a whiple due to it being so dangerous. Any thoughts on this. It is still encapsulated. Will not do chemo if it comes to that. Would rather have quality vs quantity of life. Any thoughts on this?
Gary, this is a subject that NET experts discuss all the time. To cut or not to cut is a really difficult question they deal with daily so they revert to their guidelines in many cases. The Whipple is no doubt a big operation and all operations have some danger. Is this your only tumor?
DO NOT have a whipple. I kick myself daily. One might get a tumor removed, but it is my firm belief that it does not have to include a whipple.
I received my diagnosis formally in the same month Jobs died. I wanted to email my colleagues, rather than leave it to team bosses to decide what to say to them, and in the email I said “Of all the things for me to have in common with the multi-billionaire, world-renowned genius, it had to be his illness”.
Ronnie please call me ASAP cell 802 839 0356. Need your Wisdom and help. My better half Sharon is relly having issues with Diarrhea that causes massive problems with bicarbs and potasium. Fighting for 12 years plus
Alan, I’m in UK. You can chat with me here http://m.me/RonnyAllanBlog
How lovely it would be for all of us if his widow would see fit to fund our cause, even just a little bit.
yes that would be nice….. His widow funds stuff. A worthy cause but not to NET or Pancreatic Cancer it would seem http://upstart.bizjournals.com/money/loot/2016/10/03/laurene-powelljobs-emerson-collective-invests-in.html
Steve Jobs lived his life to the end in a way that he thought best. I am saddened though that the Jobs family have not publicly funded research and support in this area. Perhaps they have privately but I have never heard of any large endowments that were Anonymous.
His widow funds stuff. A worthy cause but not to NET or Pancreatic Cancer it would seem http://upstart.bizjournals.com/money/loot/2016/10/03/laurene-powelljobs-emerson-collective-invests-in.html
Regardless of Jobs’ personal choice to remain private about his illness, I’ve always thought it would have been a fitting and valuable tribute to his fight against NET cancer if Apple had funded some initiative in his name to help other sufferers.
#Apple – it isn’t too late to do so, even now (in fact now is an excellent opportunity)
I read somewhere that Steve’s decision to have the liver transplant as a form of treatment also contributed to shortening his life. Obviously, he then needed drugs to stop his immune system from rejecting the new liver. With a weakened immune system metastases were able to grow much more quickly. A more conventional approach to treating his liver might have prolonged his life. This argument seems to make logical sense. Do you know of any evidence for it Ronny, or is it just speculation?
Yes, that is speculated in many references including the ones I used in this post. Whether it did have an effect would need medical expert corroboration I suspect. You hardly hear of a NET patient receiving a liver transplant as part of their NET therapy. Suffice to say it is not “conventional’ treatment.