http://renalcarcinoid.blogspot.com/2009/01/steve-jobs-article-he-has.html
http://renalcarcinoid.blogspot.com/2009/01/news-on-steve-jobs-neuroendocrine-tumor.html
Mr Jobs has been diagnosed with a very rare cancer, pancreatic cancer called an islet
cell neuroendocrine tumor. He was subsequently operated and stated in an open interview w few years ago, "This weekend I underwent a successful surgery to remove a cancerous tumor from my pancreas".
This cancer is a close relative of the neurodocrine carcinoma I am faced with and is classified under the broad term of CARINCOID CANCER. After his initial surgery, he went back to work and life returned to usual for him, for a while.
Unfortunately, as in a lot of cases with this cancer, sooner or later the cancer spreads (metastasizes) to distant parts of the body. When this occurs, as one MD once wrote on my report when my first liver lesion was discovered, it becomes "WORRISOME" and a sign the cancer is now "out of the bag" and spreading in its endless quest to bring an end to life.
I and covered with metastases (http://renalcarcinoid.blogspot.com/2009/05/may-27-thursday-updatetoday-at-230pm-i.html) completely covering the liver, base of the kidney, retroperitinium(sic)(deep in your belly), lymph nodes throughout belly, tumors wrapped around the aorta and one very "really worrisome" lesion (as if the others were not!), on the bone, in the base of the SPINE!
This will mean unless this is stopped, the lesion will continue until it invades the nerves and paralyzes me from the waste down!
Can you image the nerve of the son of this bitch of a disease from hell? Not only does it plan to bring an end to my life, after it causes immeasurable pain, financial problems and issues with my life and family, it now wants to paralyze me prior to ending my life!
If this is not something created in HELL itself, I don't know what is? And the bigger problem, no real cure or standard treatment (other than first line --surgery for curative intent- on a tumor that is localized and small (and is not lacerated during surgery!), otherwise, the hell journey starts. In the case of Steve Jobs, this damn disease takes one of the most brilliant man on earth, and requires him to now focus on lifesaving options he never dreamed of when he was doing his wonderful work in the garage with Gates back in the 70's.
Steve Jobs Transplant
In this story below, shared to me by a brilliant and very kind writer, from Fortune Financial Magazine, Philip Elmer-DeWitt, he writes about the fact that Steve Jobs has a confirmed liver transplant due to the disease in this liver, which must have eroded or displaced the liver itself, and unless treated as he was, would have succumbed to the disease, due to liver failure. The issue he now faces, aside from liver rejection, is the fact the drugs he is given to reduce his immune function that works to help his liver survive from his body's defenses, will also leave him open to further tumor invasion as the body is unable to protect himself from those tumors cells circulating around this body in his blood stream. They love to settle in the liver as that is the organ that filters the blood and therefor will have the highest risk of mets in the future. There is a drug called AFFINITOR, http://www.afinitor.com/index.jsp?usertrack.filter_applied=true&NovaId=2229645031292524011,
which I took for 2 years and it worked wonderfully on me for a while...it really did! See pictures of me working out and looking great while on the drug!.
The MD's will probably give him this drug, with others as a suppressant. This drug also helps to stop tumor progression and growth, however, as anything in this hell, it is temporary, the the tumors come back and start growing again.
One concern is the "rebound effect" that has yet to be studied but has been addressed by one MD in Europe AS A CONCERN.
The tumor cells that do not respond to the drug, MAY become more aggressive due to the therapy after its done. That is a guess on my part. When I started on the drug as an experimental therapy in 05, I had 2-3 lesions only can could be detected on CAT scan. During the the 12 or 15 months on the drug, the tumors were stable and started growing again slowy at first.
But, a few months after I stopped taking it, I was covered with tumors in my liver, both lobes with innumerable tumors on both lobes of the liver, and the tumors on the kidney base now twice as large as when I started in 05! This tumor was now inoperable.......
So one needs to be very careful when taking any drug to treat this disease due to known and unknown side affects and collateral action down the road.
I have read of a person with a liver transplant, with this cancer, that is alive and kicking years later, without disease, so this approach does and will work.
MY DISEASE, a YEAR TO LIVE AND WORK
In 2007, August, as I was searching for another life extending treatment, and when at MDACC, the MD told me, after viewing my scans, that I have "about 1 year" due the extensive liver disease that my cancer had progressed to. The crazy part about this, as I signed up for another round of experimental treatment @MDACC, not knowing I would be able to qualify, I ran to the airport and left on a plane to fly back that night back home and return to work at 8am in the morning for a "important business meeting".
I remember during the meeting, as we would talk about the gravity of a business situation, and the cost of a particular project, and the need to develop objectives, goals, measures and successes, that I would replay the MD's speech in my mind "you have, more or less a year left before the liver becomes a problem" (after a while you become good at defining what a MD is trying to tell you without one throwing up or fainting-- in doctor nice speech, I had less than a year to live partner, so get you life in order! IT"S GO TIME).
In any event, during this important meeting, I did not take notes, and left without paying attention to much as to what was said. It was on that day, that I started to really think about the fact that working, in a high pressure job, where people walk in, and their lives, their energy and their focus in on one thing- work, climbing the Corporate ladder, being successful and making the company successful. I used to be that person in the past.
But this time, I walked in with a different mind set. A mind thinking about how I will die (liver failure and quickly), will it be painful (yes), my family, my life, my finances, and the never ending issues with my insurance ("DENIED" is the first thing they learn in INSURANCE NEW HIRE CLASS- how to say it, how to postpone decisions, how to structure it so the dying patient has little information, how to cover themselves with legal data to legitimatize the decision, etc.). And finally, I thought about this damn disease, the "what if I had done something different, pushed back earlier, realized the structure of the business," replay of my journey though hell, and the treatments I had received in the past?
And later that afternoon, I went to the bathroom and vomited.
It was that day, that I started realizing then, it would be very difficult to work and live normally with a monster wrapped around my neck 24/7. Not only from a physical perspective, with the pain, diarrhea, fatigue, mental confusion, and pills, etc, but the constant calls for appointments, the insurance calls (hell's nephew), the bill collectors wanting you to make a "good faith payment" (once a $15,500 payment for an injection what cost $2000 to buy direct, and I thought was covered due to the fact the MD that gave it to me was in the network!), and finally, the thoughts of what happens once it over, would I be in a cloud with Mother Teresa, or down with Stalin?
WHAT HAPPENS AFTER DEATH
We have been raised to believe, in my Christian beliefs, that we will end up in heaven (unless of course you are really bad, and do not confess your sins (I am catholic), and therefor one goes to burn in hell, where guys like Stalin, Hitler, Carlos "the jackal", Amin, etc, and perhaps Hugh Hefner (he has to end up there, even if just a few minutes I think, when he finally passes away. Just to equal things....The man is 105 years old and is sleeping with three of the hottest blonds on earth today and has been with hot woman all his life in a life similar to "Dantes Inferno".
There has to be a equalization rule somewhere! I think it's painted in a little corner of the the Sistine Chapel (://en.wikipedia.org/wiki/Sistine_Chapel), somewhere, between the angels and the Adam pointing at God mural.
The equalization rule....if you come to this world, make a billion plus dollars, don't use most of your wealth for the good of mankind, and end up sleeping with 3 hot, hot, well endowed and intellectually challenged blonds, in your bed and hot tub, at 102 years old (after using women to make a billion + dollars), oh yea, you have to at least be scorched somewhat, I think, even if just a small, lava rock"bum burn", and a stick of the pitch fork!
It just would not make sense to have Mother Teresa and Hugh Hefner in same "heaven cloud", talking, drinking lattes, and enjoying life everlasting, in heaven, floating. Am I off here??@!
On a more serious note (please note, I channel my worries, my fear and concerns into some attempt at humor at times. I don't know why but it seems that is my personality, so if I offend you, please forgive me, and don't read my blog anymore- I may drop it soon anyways).
STEVE JOBS ARTICLE
The article posted below was graciously sent to me by Mr. Elmer-DeWitt of Fortune after I wrote him re:Steve Jobs and this disease of ours that is related in so many ways. He was kind and thoughtful enough to respond and sent me the latest data on Mr Jobs which I want to share.
Interesting enough, and although I like to take credit for it in my mind, I wrote Mr Jobs in a "open letter" in January (2nd link above), while he was still working, looking terrible due to the disease. I wrote him to he please discontinue working and focus on what is important in his life instead of stock price (it will bounce back, if you pick the right management team to succeed you) and IPODS, IPHONES and who knows what, while he still has time--his disease, family, his wife and children. And to possibly, and please, please, please, perhaps help raise awareness and funding for neuroendocrine tumors and carcinoid cancer research, if he so desired. Well, interesting enough, he resigned his position at Apple 2 days later! You think I had anything to do with it? Nope, but I like to dream!
I started this blog, and have devoted many, many, many, (too, too, too) many hours (refer to note above) to it, for the purpose of helping others, to raise awareness, outlet for me (cheaper than counseling at times), for information sharing & to expand my network and help raise money to fight this disease- NET: TO MAKE A VERY SMALL, BUT A DIFFERENCE NEVERTHELESS, IN THIS WORLD I NOW AM FORCED TO WALLOW IN.
Its good for me to think, even though I am most likely, certainly, and 99.9% wrong, that I think I had an impact on this wonderful man (although he has still not helped much relative to public awareness and research funding leadership and assistance), he read my note, thought about it, and stepped down from Apple after reading Journey through NET Hell blog open letter!! :)
And now has focused on his health and family and trying to enjoy life (although I really think someone like Steve enjoys life through his work and all that comes with it. "Apple are Steve", he lives and enjoys life through his company, and his work and his products!)
The one thing I won't do, is buy anything of Apple Inc.....its just me but this person can make a difference, a real difference for the thousands of humans, young and old, that are afflicted with this disease and he remains silent and disengaged. IT IS HIS RIGHT FOR CHOOSING THIS PATH. HOWEVER, THE WAY I EXPRESS MY DISAGREEMENT WITH WHAT is being done, or not being done, is TO NOT PURCHASE ANYTHING MADE FROM APPLE!....ITS JUST ONE SMALL PERSON, IN LIVING HELL, BUT ITS MY SMALL STAND TO MAKE. Its the American Way I think, right?
I ONCE READ A QUOTE THAT SAID, PARAPHRASING IT NOW "THE HOTTEST PLACE IN HELL ARE RESERVED FOR THOSE THAT CAN MAKE A DIFFERENCE, AND CHOOSE TO NOT DO ANYTHING"......I AM NOT SURE WHERE THAT CAME FROM BUT ITS ON THE BILL MOYERS INSURANCE VIDEO.
NO APPLES FOR ME (sorry mom)!!!
where the hell are my pictures????? on this article anyway.....????
Fund Raising/Awareness
On November, 2008, I did my a fund raising event for Carincoid research. I did a "turkey day" walk on Thanksgiving for the benefit of Caring for Carcinoid Foundation, received great support from family, friends at Procter and Gamble and other NET friends,CFCF, and it felt great after I completed it, although a lot of hard work went into it. (footnote-I believe, what I did in Nov, would not even "register", if Mr Jobs would do something as simple as asking for people & companies to donate for NET/Carincoid research, to find a cure for this insidious disease!).
If you are interested in donating, or doing a fund raising event, in honor of Steve Jobs, there are many places which support neuroendocrine tumors and carincoid research. A number of the foundations are on the left hand side as links (CF, CFCF, CCNETS, Bad Berka Nuclear Medicine research center is a new one, etc)
You can find information on how to donate, or do a fund raising event.
YOU CAN ALSO WRITE ME DIRECT AND I WILL SEND YOU INFORMATION ON VARIOUS FOUNDATIONS AND RESEARCH CENTERS THAT ARE DESPERATELY NEEDING YOUR ASSISTANCE AND FUNDING TO HELP IN FINDING A CURE! I can also send you info on how to research the foundation, where the money is going, how they are spending it, etc...due diligence one should do to any organization you are considering your hard earned money to.
If you have never done it before, you will be surprised at the sense of accomplishment and one has when completed! So try it one day.....for SJ!
Steve Jobs
Here is the article in Fortune Magazine, which BTW, I buy every month when I fly, re: Steve Jobs and his current status.
Separately, remember to say a prayer or wish him good karma or whatever you use, for Mr Jobs and his family (throw me in the mix also please!). A better man, who has made a difference on a global scale, is hard to imagine. I wish him well in the future.
BTW- click the Title to this blog for the link to the Fortune Article. Thank you Philip!
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June 20, 2009, 7:31 am
Inside Steve Jobs’ liver transplant- this is a picture that disappeared! only one to do so.....can you believe it?
On Friday the Wall Street Journal reported, without indicating its source, that Apple (AAPL) CEO Steve Jobs underwent a liver transplant operation in Tennessee about two months ago.This would seem to confirm a report in mid-January that Jobs — who had a tumor removed from his pancreas in 2004 and took a medical leave earlier in January to deal with continuing health issues — was considering such an operation, as well as rumors in mid-April that he was having the surgery in Memphis.
Two hospitals in Memphis are designated liver transplant centers: Le Bonheur Children’s Medical Center and Methodist University Hospital. Le Bonheur does not perform liver transplants on adults. A spokesperson for Methodist told the Journal that Jobs was not listed as a patient there, which leaves open the possibility that he was registered under another name.
About 6,000 liver transplant operations are performed in the United States each year at more than 100 hospitals, according to the Organ Procurement and Transplant Network, but the waiting list for donors is considerably shorter in Tennessee than it is in most states.
Second picture fo disappear.......second one to do so.....can you believe it???
The operation usually takes five or six hours. The surgeon makes a large incision in the upper abdomen and removes the damaged liver by cutting all the attached ligaments and severing several vital ducts and vessels, including the common bile duct, the hepatic artery, the hepatic vein and the portal vein that carries blood to the liver from the spleen, stomach, pancreas and intestines.
Blood from the liver is replaced by an ice-cold solution until the organ can be replaced.
The new liver — usually rushed from a recently deceased donor in the kind of race against time regularly featured in TV medical dramas — is then placed in the empty cavity and attached to those vessels and ducts. [A growing percentage of hepatic transplantation procedures, as several readers have pointed out, are partial liver transplants from living donors.]
Recovery can take many weeks and the survival rate is good. 80% to 85% of patients live for at least a year; about 75% live for five years or more. (Recent studies report that the five-year survival rate at experienced transplant centers is over 90%.) To prevent rejection, patients must take immunosuppressive drugs for the rest of their lives.
Liver transplants are well-accepted treatments for end-stage liver disease and acute liver failure. The situation with Steve Jobs, who is recovering from a rare form of pancreatic cancer — called islet cell neuroendocrine tumor — may be a different story, as a key passage in the Journal piece suggests:
William Hawkins, a doctor specializing in pancreatic and gastrointestinal surgery at Washington University in St. Louis, Mo., said that the type of slow-growing pancreatic tumor Mr. Jobs had will commonly metastasize in another organ during a patient’s lifetime, and that the organ is usually the liver. “All total, 75% of patients are going to have the disease spread over the course of their life,” said Dr. Hawkins, who has not treated Mr. Jobs.
Getting a liver transplant to treat a metastasized neuroendocrine tumor is controversial because livers are scarce and the surgery’s efficacy as a cure hasn’t been proved, Dr. Hawkins added. He said that patients whose tumors have metastasized can live for as many as 10 years without any treatment so it is hard to determine how successful a transplant has been in curing the disease. (link)If Jobs’ cancer did spread to his liver, the fact that he had this procedure suggests that it may not have gone any further. Most hospitals will not perform a transplant on patients with metastatic cancer that has spread outside the liver.
Apple continues to say that it looks forward to Steve’s return to Apple at the end of June, which is 10 days away. It has not yet returned a request for comment on this report.
Transplant image courtesy of Tulane Medical Center.
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