ZOIS Blog

The late Steve Jobs and I never met, and I doubt very much he’d have heard of me before he passed on. I, like much of the planet, knew who he was, though and I morn his passing. But perhaps not in the way most other people do. He and I shared a vaguely similar medical diagnosis, so when asked, I used to compare myself with him. Less so now.

I suffer from a rare Neuroendorine Tumour, a disease that in one of its other myriad forms also afflicted Steve. I therefore used to use Steve Jobs as a cipher. When people would ask, I’d say that I’d the same stuff as him. It was a lot easier that me giving some heavy explanation. Steve was upright, running a big company, and by all accounts, still being a bit of bastard. So, I was like him.

I’m afraid much of Steve Jobs’s problems were shrouded in mystery. Every health announcement effected the share price of Apple, the company he was largely responsible for, and thus was approached with a large degree of caution.

Here is what I know, or can guess, given the background of my own particular journey. It should be read with caution, I’d suggest, for it is as much conjecture and speculation as anything else you’ld find on the Internet on this topic.

He appears to have been diagnosed with an Insulinoma, a tumour arising from the cells that produce Insulin in the Pancreas. The Pancreas is elongated pear-shaped organ near the stomach. It both produces hormones, of which Insulin is the most famous, but also a variety of chemicals that aid food digestion, which emerge from ducts and run directly into the gut.

Steve seems to have had the symptoms for some time, but it’s understandable if he had a bad diagnosis, or that he ignored the symptoms. These things creep up on you and are easily dismissed as a consequence of a peripatetic lifestyle, or even the normal decrepitude that comes to us all. I’ve been there and done that. Mine, by the way is a Seratonin producing effort, originating from cells that should rightly be in the top part of the large intestine (and nowhere else).

It’s early on that he seems to have delayed having surgery to section the Pancreas, but by the sounds of it the tumour had gone metastatic, and that it was already in his Liver. This is when he’s supposed to have gone macrobiotic on it and, allegedly indulged in some detrimental, faddish new-ageism.

He then had to have had a large amount of his Pancreas and a chunk of the surrounding small intestine removed, not long after, which would have made him quite, quite ill, and diabetic. Like me he would probably use several drugs including somatostatin analogues to control what was left. Somatostatin is a hormone that seems to control other hormonal systems. It acts to shut them down and reduce their activity. His subsequent treatment suggests that his tumours were sensitive to this.

In my case the primary tumour and a sizeable portion of the lower bowel were removed. This was done as soon as I was diagnosed. My tumour had gone metastatic, the surgery didn’t cure me. Instead I have to take a number of drugs including an artificial form of somatostatin, I was like Steve in this regard, and it forms the bulk of my treatment.

Steve may have had Liver ablative therapy, up to and including a section to try and control the tumours found there. At some point he went to Switzerland (Bern) to undergo a radiation-based somatostatin analogue treatment known as Octreother, I knew a clinician who was on the clinical trials. This treatment was not available in the States at the time, and not yet licenced there. Hence the travel.

He famously then had a Liver transplant. This is last-resort stuff, and doesn’t necessarily improve these things. You’re usually very sick by the time you have this procedure and it would seem that this Liver became re-infected with metastatic tumours from elsewhere.

I’ve had work done on my Liver too. I’ve had a series of embolisms, where a fine tube is fed into the tumour site and then the blood vessels are clogged up with something akin to Snow Globe snow. There have been some variations on this. Some of these emobolisations contained nasty chemicals, a narrow directed chemotherapy. In other instances a probe was inserted into the tumors and they were microwaved, a technique known as radio-ablative therapy. I’ve not required anything else, as yet, but various targeted radio therapies, including Octreother remain open to me. I’d be happy with further rounds of embolisation, should my symptoms demand it.

Steve continued to loose weight and I understand that the final cause of death was pneumonia and complications arising. In order to increase weight, he would have been fed through a cannula in a large artery. Happily this is where he and I completely part company. In my instance my weight remains reasonable, good even, given my sedentary lifestyle and remain notionally fit, otherwise. There are some long-term problems associated with the cardiovascular system, but I’ve not displayed any debilitating symptoms as yet. This tricuspid regurgitation, then remains something of a curiosity to show medical students. While I can take nothing for granted I’m happy for it to remain that way. It is unrecorded if Steve had cardiovascular problems, but lately if he did, then they were the least of his problems.

His outcome was relatively poor, given what he had. It did seem to be rather more aggressive that the stuff I’ve got, though. Neuroendorine Tumours can be as bad as ‘normal’ cancers and then they are treated in much the same way. In these instances they’re cancers with some interesting side issues. Yet, some are quite benign, and even non-expressive, in that they don’t produce hormones. And there any number of shades of grey in between.

When I started writing this it was only meant to be a couple of paragraphs both to note Steve’s passing, and something I could point to, by way of explanation, now Steve and I have parted metaphorical company. I may therefore put it with my “What Ails Me” page, so that people are better informed. I, personally, continue to be stable and at some-kind of plateau. My Neuroendorine tumour has gone metastatic, I’ve had the original site removed, and I’ve had a series of minor operations that have reduced the tumor bulk in the liver. The drugs do seem to be keeping it otherwise under control, but leave me with a lot of relatively minor but irritating symptoms. It’s not the best, but I can live with it. I’ve not indulged in anything that can be considered alternative, macro-biotic or new-age and are probably the better for it.