Steve Jobs & his liver transplant

cooka

I think many times important social change is born out of tragedy. Steve Jobs recognized that a disparity existed in his access to a transplant, and he worked to change that by championing a bill about Living Donors in California. I don't think it is disrespectful to table a discussion of money/access to care or other social issue when you have a national platform (i..e death of a well known person, natural disaster, etc.) to do so. We change laws when enough of us are informed and passionate enough to motivate the change. We can't get a groundswell going if we don't talk about this stuff. Here is a quote about the California law:

"Jobs, the CEO of Apple, was a major player in bringing the bill to the forefront, said Schwarzenegger, in a March 19 press conference.

"He's a wealthy man," Schwarzenegger said at the news conference. "That helped him get a transplant. But he doesn't want that -- that only wealthy people can get a transplant."

Recognizing and discussing that a disparity exists, and using Steve Jobs illness as a platform to do so is not unprecedented, he did it himself. 

http://www.cbsnews.com/stories/2011/01/06/eveningnews/main7220629.shtml

Anonymous

Steve Jobs did nothng for people suffering from cancer let alone breast cancer. Steve Jobs was for Steve Jobs.   We are talking about a very rich man that thought it was OK to park his Mercedes in handicapped spots.  Not to mention that he would not put a plate on his car. He saw himself above the law,

It may be to his demise that he used alternative medicine after his diagnosis. Ironically, all of the woo miesters are now coming out and claiming that he died because of conventional medicine. GO FIGURE

apple

i think you are a bit misinformed. 

peace and love, apple / Mary
Diagnosis: 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+

PlantLover

I am shocked that more people in this community are not concerned that IT SEEMS he was able to get around the system because he was a billionaire, thus effectively "buying" a liver. I'm sorry that it seems to be an inappropriate time to discuss this.

There has not been a single post on this thread that indicates there are any stats on someone being allowed to be listed on the organ recipient list if one has liver mets?  One post mentioned that a co-workers sister was diagnosed with a very rare liver cancer. One hospitals said here is hospices number, let us know what we can do to help comfort you.  The 2nd hospital said "Lets get you on the transplant list".  She was not rich.  That is not liver mets. 

dreaming posted: I have worked over 20 years in a cancer center and I have never met a cancer patient that was given a transplant.

Apple, you even posted: My brother in law quickly died of pancreatic cancer.. took about 3 months from diagnosis.. He was ineligible for a liver transplant because his cancer was also in other organs...i miss him a lot. 

So, why was a billionaire allowed to be an organ recipient and your brother wasn't?  That makes me sad & angry!  I'm very sorry you lost your brother!

cooka posted: There are huge issues with health disparities based on class, race and gender...you may have heard the story of the man here in AZ who was on the list for a kidney and it came through...right at the same time the state cut funding for his healthcare. His family watched him die and it was all about his inability to pay. How can that happen in a country like ours? It was all over the news, his family by his bedside. How come someone enormously wealthy didn't come through and pay for it? Our country doesn't lack money and resources to ensure at least adequate medical care for everyone...we just lack the capacity/spirit to find it in our hearts to distribute the resources where people won't needlessly die in the middle of a large American city surrounded by modern medicine that could easily save them.

Exactly my point!!!

Celtic_Spirit posted: I don't think the gist of it is about Steve Jobs's character; it's about whether as cancer patients we can have liver transplants or transplants of any kind.

You got it, Celtic!

Beesie

I've been reading this thread with interest but staying away.  PlantLover, with your latest post, I would now like to add my thoughts.   

From what I've read, Steve Jobs did not get around the system.  What he did was 'work the system', which is completely different.  We all try to work the system to our advantage, as best we can. Through many illnesses, my father would always work the system.  For him, that meant paying attention to the staff - bringing chocolates and compliments and charm - so that when he needed something, they would smooth the way and make it happen. Lots of us work the system when we call our doctor's offices and ask to be called if there are any cancellations, so that we get in to see the doctor or have the procedure sooner than if we just went to the bottom of the list and patiently waited our turn.

Everything Steve Jobs did was open and above board, and available to anyone else in his situation.  He had more resources and that certainly helped, but others in his situation without the resources could be creative and find a way to do the same thing.  Go to the local press, set up fundraisers, etc.. Become a local "cause celebre".  Find a way to get the resources so that you can get onto the transplant list at a location where the list is significantly shorter. 

As for the question of the liver transplant and whether it was medically appropriate for someone with pancreatic cancer, from what I've read, within the medical community there seem to be two conflicting opinions. Some doctors won't do a liver transplant on anyone with cancer.  Others will do transplants for those with the type of cancer that Steve Jobs had because there is the potential to completely cure the disease if the spread is only to the liver. Steve Jobs obviously sought out a doctor who was in the second camp. While I don't know this for sure, I strongly suspect that this same doctor would do the same for any patient with the same disease, at the same stage and with the same prognosis.

Here is an article that discusses the medical efficacy of the liver transplant.  There are no stats on the survival rates, but then liver transplants for this type of cancer are pretty rare so it would be hard to get any meaningful stats:

Jobs's Tumor Is Rare Reason for Liver Transplant, Doctors Say  Jobs, 54, had a transplant about two months ago, a person familiar with the matter said. Jobs said in 2004 that doctors removed a neuroendocrine islet cell tumor from his pancreas. Liver replacement may stop the cancer from spreading in some cases, said Abhinav Humar, clinical director of the Division of Transplantation at the University of Pittsburgh Medical Center.

The top 10 U.S. transplant centers have probably performed fewer than 100 of the procedures to treat the spread of neuroendocrine tumors overall, Humar said June 20 in a telephone interview. About 6,500 liver transplants were performed in the U.S. in 2005, according to the New York-based American Liver Foundation. Jobs's tumor may have spread to his liver and the transplant was done to eliminate the growths, Humar said.

"These tumors often metastasize just to the liver," Humar said. "It's the most common place where they metastasize, and for that reason it's one of the rare pancreatic cancers that you can treat with a liver transplant."      http://www.bloomberg.com/apps/news?pid=newsarchive&sid=ax_6mEPxzi3I

With the diagnosis of a very rare type of pancreatic cancer, clearly Steve Jobs' medical situation was not as black and white as it might otherwise seem to be.  While a discussion about transplants and cancer is interesting and valid, it's unfair to point the finger at this one individual and say that what he and his doctors did was wrong and was done only because of who he was. We simply don't know that, and the information that is available seems to suggest otherwise.  A general discussion is fine; using pure speculation to slander Steve Jobs is not.

apple

Plant lover.. my BIL's cancer was fairly complicated and definitely in the wrong place.  the duct from the liver to the pancreas was completely closed and cancer had travelled already.  He basically had end stage liver cancer.. even tho he was diagnosed with pancreatic cancer.  If he had a transplant, he would have died anyway.. A transplant would maybe have given him a few more months, but not years.

We were all devastated by this news.

cooka

Beesie, I enjoyed reading the info you provided and the points you made.

j414

First, insurance companies will pay for a liver transplant for metastatic cancer under certain conditions. As an example, Aetna's policy is below.  As an aside, five years ago my uncle had metastatic pancreatic cancer and he briefly considered a liver transplant, but ultimately decided to decline further treatment.

http://www.aetna.com/cpb/medical/data/500_599/0596.html 

Second, all organs are processed through Unos, which has a very heavily oversighted process in the donation and assignment of organs. Procurring an organ outside of Unos is, essentially, organ brokering which is a federal felony.  Also, Steve Jobs was, in all like likelihood, on the waitlist for several years. He was diagnosed with pancreatic cancer in 2003/2004 and had the transplant in 2009.  He was looking quite ill around the introduction of the iphone in 2007 and there was a lot of speculation that something was wrong.  At some point, even the Securities and Exchange Commision got involved because it was thought that Steve Jobs illness was a "material event" and should have been disclosed to the market much sooner than it was.

Third, Bessie is absolutely correct - Steve Jobs didn't get around the system, he worked it by "criteria shopping".  He put his name on multiple organ wait lists outside of his home state (which is both legal and ethical) because california has one of the longest organ wait list in the country and transplant centers have different rules for accepting metastatic patients.  Many people put themselves on multiple list, but many don't because getting on each wait list requires an extensive in person evaluation and one must be available within hours of an organ becoming available.  I'm not rich by any means, but if I or someone in my family was in his position, this is the approach I would take.

Malignancies:

1. Primary hepatocellular carcinoma confined to the liver when all of the following criteria are met:

   1. Any lung metastases have been shown to be responsive to chemotherapy; and
   2. Member is not a candidate for subtotal liver resection; and
   3. Member meets UNOS criteria for tumor size and number; and
   4. There is no identifiable extrahepatic spread of tumor to surrounding lymph nodes, abdominal organs, bone or other sites; and
   5. There is no macrovascular involvement.

pupfoster1

I pondered this question yesterday as I thought cancer patients as a rule were not considered for transplant as well. 

However, the donor organ wasn't wasted.  Steve Jobs lived on for a while longer and was an incredible contributor to the human race.  So even if it was for a couple years it did it's job IMHO.  

I agree it is truly sad that some people can afford things others can't.  We see it right here all the time.  Women w/out insurance that can't afford just the basic tx's that could save or prolong their lives. It's horrible.  And for me, yes, if I could afford it and I knew it would keep me w/my family longer, I would do it if it were possible.

That said, I am sad for the loss of a great man and my prayers go out to his family and loved ones.

Wish there was an easy solution to this issue.

Sharon

Halah

I love this article from the NY Times because they are objective in Steve's cancer (rather than attacking), liver transplants, and the system that manages the transplants. It explains everything.

A Transplant That Is Raising Many Questions

Might I suggest a new thread be started about liver transplants and cancer that has nothing to do with Steve Jobs? That appears to be the true interest here. 

Mindy  

Kaara

It is what it is.  Does not surprise me that someone of Steve Job's importance in the world would be given priority on a liver transplant.  At least he wasn't an alcoholic celebrity.  He made a contribution to society and left quite a legacy.  May he rest in peace.

Anonymous

Here's an interesting blog on the subject:

http://scienceblogs.com/insolence/2011/10/steve_jobs_and_pancreatic_cancer_two.php#comments

"

How many people are capable of getting themselves listed for transplant in a state nearly 2,000 miles away from their home? When a liver becomes available, there isn't much time to get to the hospital. That means a person seeking a transplant in another state either has to stay in that state for as long as it takes to get an organ or be within a distance to be able to fly there within a very short period of time. Moreover, organs eligibility and availability are determined by the United Network for Organ Sharing, which maintains the donor lists. When an donor is identified, regional and state organizations (in my home state, for example, Gift of Life, where one of my relatives works), obtain consent, arrange for organ harvest, and decide, based on fairly strict criteria published by UNOS regarding medical need and practical matters like how long it will take to get the organs out and to the hospitals where they are needed, which people on the waiting list for the state will receive each of the organs harvested. If this story is true, what Jobs did is not illegal, but it sure does leave an unpleasant stench of the rich and powerful taking advantage of regional differences in organ availability, perhaps at the expense of a lifelong Tennessee resident who needs a liver.

Worse, the indication is somewhat shaky. For one thing, as was pointed out in the article, neuroendocrine tumors are generally very slow growing and take a long time to metastasize. One of the more "common" subtypes of the rare neuroendocrine tumor in particular, a carcinoid of the appendix or the rectum, is particularly prone to metastasize to the liver and is notorious for causing carcinoid syndrome, which is due to serotonin secretion by these tumors and causes flushing, diarrhea and other unpleasant symptoms.

In any case, the indications for liver transplant for neuroendocrine tumors are a bit controversial, but a good summary can be found at the Mayo Clinic website, the NCI website,  and the American Cancer Society website.

In general, for neuroendocrine tumors metastastic to the liver, the first options to be considered are ablative options. These can include surgery, if the tumors are resectable, or ablation by various methods, such as radiofrequency ablation (RFA, or, as we like to say, "cooking the tumors") or cryoablation (cryo, a.k.a. freezing the tumors). Surgery can be curative if the lesions are confined to a volume of liver that can be completely resected, and RFA is generally reserved when there are lesions in multiple lobes not amenable to surgical resection. For the consideration of a liver transplant, a patient must have multiple lesions in multiple lobes of the liver that are too numerous even to be cooked by RFA or frozen by cryo. Moreover, there can be no evidence of tumor anywhere other than in the liver. If there is evidence of tumor spread anywhere other than in the liver, then even liver transplant would not help. Given these indications, if Steve Jobs did undergo a liver transplant, it's safe to assume that he had multiple liver metastases that were not amenable either to resection or ablation.

In addition, another indication is that symptoms must be such that they can't be controlled by medical therapy. For an insulinoma, controlling the symptoms due to hypoglycemia can actually be quite difficult; so the type of tumor Jobs produced symptoms that are more difficult to palliate than the average neuroendocrine tumor. The NCI website lists these recommended methods:

• Combination chemotherapy: doxorubicin plus streptozocin or fluorouracil plus streptozocin in patients when doxorubicin is contraindicated.[1,2]
• Pharmacologic palliation: diazoxide 300 to 500 mg/day
• Somatostatin analogue therapy (SMS 201-995).
• atients with hepatic-dominant disease and substantial symptoms caused by tumor bulk or hormone-release syndromes may benefit from procedures that reduce hepatic arterial blood flow to metastases (hepatic arterial occlusion with embolization or with chemoembolization). Such treatment may also be combined with systemic chemotherapy in selected patients.

So what are the results of liver transplant for neuroendocrine tumors? Because these tumors are so uncommon, there's never going to be a randomized clinical trial. All that can be found in the literature is around less than 200 patients who have ever undergone liver transplant for neuroendocrine tumors. A recent series published out of Mount Sinai reviewed the literature and found five year survival rates for liver transplants for neuroendocrine tumors are all over the map, ranging from 33% to 80%. The series itself reported reported 36% five year survival. However, all of these were very small series, some only a handful of patients; so it's hard to generalize any conclusions from them. However, it's the best data available right now. The kindest and most generous characterization that can be made is that that the evidence for treating neuroendocrine tumors metastatic to the liver with liver transplantation is mixed at best. On the other hand, the symptoms from an insulinoma can be quite troubling, including the symptoms of hypoglycemia, plus weakness, confusion, personality changes, headache, and ataxia, and palliation is difficult, even if it does tend to grow very slowly. Moreover, in a patient with lots of liver metastases, liver transplantation is the only modality that holds out even a hope for cure. Still, it's arguable whether it should be done in these cases, given the scarcity of organs and the questionable results."

SoCalLisa

I have more than a passing interest in this subject...the miasma of my breast cancer treatments fried my liver to the point of cirrhosis...I have been living with this for nine years but my liver is never going to get better only worse and then liver failure which can occur rapidly..I do everything I am told to do by my liver doctor to maintain ...Wednesday he told me he was surprised that I made it this  long...he worked on my MELD score and it was not high enough to even consider a transplant, but he also told me because I am two weeks from being 69, he told me,  I am in effect too old for one...this is all due to the limited supply of course. Now should be livers go to younger patients, that would seem like a possibility, but that leaves me out..

thiis is the dilemma...how to dole them out...

Celtic_Spirit

SoCalLisa - That's interesting. It seems that our information and experiences regarding organ transplants for cancer patients are quite varied. It sounds like your issue with not being put on the list is not with mets to the liver. If you don't mind me asking, did your doctor say it had anything to do with your being a breast cancer patient?

SoCalLisa

Celtic..I do not have mets or any cancer of my liver, it is simply heading toward failure because of the many toxins involved in the breast cancer treatments..but the liver failure isn't bad enough to require a transplant at this point even though it could change on a dime.I already have varices....I think it was a perfect storm of methotrexate, lots of tylenol  for the pain of the neupogen, and then followed by tamoxifen ...all when I was totally at rock bottom...

Halah

Hi Lisa, sorry to hear about your liver. I had no idea chemo could do that. Or was it radiation, or both? 

exbrnxgrl

With respect to money and "working" the system, the reality is many of us do it though clearly not on the same level as Mr. Jobs. For example, I belong to an HMO which I believe delivers a high level of care. My family, however, wanted me to get a second opinion at a renowned teaching hospital. I could not have paid for this on my own so they paid for me. Was that fair? No, not to those who do not have a rich family. I wish all things could be equal in the medical realm but as we all know, they are not. Rest well Mr. Jobs, your vision and your company's products have enriched my life.

Caryn

karen1956

I usually am not this vocal about a thread that bothers me...but unless we were there to hear all the doctor discussions, insurance discussions, money discussions etc, who are we to judge the rightness or wrongness of someone who is beyone wealthy get medical care be it a liver transplant or not.....Can't this man be given the respect he deserves....let him RIP....let his family grieve in peace.....

Celtic_Spirit

It seems that the people who are bothered by this post keep coming back and bringing up the Steve Jobs element. Why is that? We've kind of moved on to organ transplants for cancer patients in general, which is a worthy and important topic...one that some are currently faced with and others may encounter later.

Alpal

I am amazed that people have time to critique the treatment choices of a terminal patient who they don't know. Why do you care? Makes me wonder if you spend time lurking on the Stage IV Forum and then discuss it in pmails. Nothing wrong at all with having a discussion about how organ donation works, but to make it personal is appalling to me. My advice is to get a life.

karen1956

Celtic.....I guess my point is, who are we to judge what treatment a person receives....it is not my place to judge....if a cancer patient is determined by the doctors to be eligible for a transplant of any kind, then so be it....it is not my place to judge whether or not they should receive it......

Alpal....personally, I don't lurk on the stage IV forum.....I've not walked in your shoes....

Alpal

Karen - my remarks were not directed at you. Sorry for any confusion.

Celtic_Spirit

Let me repeat myself...we're sharing information about organ transplants for cancer patients in general, and I think a lot of the ladies here have shared interesting information either from personal experience or research they've found. Why do you keep bringing up Steve Jobs? And how did you make the quantum leap to "lurking on the Stage IV forum"? When I'm not comfortable with a topic on one of these forums, I don't read it. And yes, I do have a life, which is why I don't spend time reading, censoring, or responding to topics that disturb me. It's that simple.

covertanjou

Celtic,considering that Steve Jobs is the title of the thread, it is not surprising that people will respond to that.  

I agree with Alpal.  Why does anyone care what his treatment was?  Also, having a liver transplant is standard care for his type of cancer according to some sources (cancer surgeon Joseph Kim).  

I shudder to think that his family could come across this thread and read some of the things written here.  Let the man rest in peace. 

SoCalLisa

I think the thrust of the topic here is how organs for transplant are matched or not with patients who need them...so maybe we should just have a separate thread for this...it is important (at least to me), but  really we should let Steve Jobs RIP...

Alpal

Whew!  Celtic Spirit - I was directing my comment to the posters who continue (even though the thread has turned to an interesting discussion of organ transplantation) to rake a dead man over the coals because of his treatment choices. I don't think that it is such a quantam leap to compare that to the Stage IV threads where many terminal patients are discussing treatment choices.

I have been reading this thread for 2 days and after the latest post about the blog criticizing Mr. Jobs and his treatment, I felt compelled to post.

My remarks were not directed to anyone who was discussing organ transplants in general - only those who felt it necessary to bash a stranger's choices.

cooka

SoCal, I am so sorry to hear you are in the "too old for a transplant" trap. We had a big discussion the other day about ageism and how we can actually bring ourselves to say as a society that the 2, 3, 4, 10, 20 years of life someone in her late 60's gets after a transplant aren't worth it? I know there are difficult lines to draw, but do we really think life is over at 69? Yikes! I guess we really need to find ways to energize people to leave their organs here when they go, so we an expand eligibility criteria and access for more people in need of transplants.  Thanks for sharing your story.

cycle-path

Several people above have said that those of us who've had BC can't donate organs. Not true! EVERYONE can donate corneas, even those who die of a cancer-related illness (except leukemia). Also, if your cancer has been in remission for more than 5 years, frequently your other organs can still be used. Every prospective organ donor is screened -- even those who die of a cancer-related illness.

Please do NOT assume that you can't be an organ donor because of BC. You can still save or prolong a life or give someone back their eyesight! 

Celtic_Spirit

Has anyone had or know of anyone with cancer (in remission or not) who has had an organ transplant other than liver, say, bone, cornea, kidney? Were they able to tolerate the immunosuppresent drugs? Did those drugs cause their cancer to grow again?

SoCalLisa - I'm so sorry about the damage done to your liver. It's a shame they won't put you on the waiting list. I don't think 69 is so old...people have many good years after 69.

1Athena1

Apple: This thread makes me sad too and I could barely read past your post.

Please let the man die in peace. Is there jealously, perhaps, because he had money? How sad. Even after the man died ridiculously young.

Let's just be thankful to be alive and writing here. A man like Jobs had too much zest and energy. He would have traded places with the poorest of men in a heartbeat if it would have saved him.