CancerGuide: Kenneth Shapiro - 25+ Year Survivor of Widely Metastatic Melanoma

I have had metastatic malignant melanoma stage four, level five for over twenty-five years with mets to liver, lungs, stomach, kidney, and prostate. I have had over fifty surgeries including the removal of the primary, radical neck disection, and removal of my left kidney. I have been on DTIC, Actinomycin D, C-Parvum, 2abpp, gamma interferon, BCG, radiation, as well as cherry picking of about forty subcutaneous spots.

None of the chemo or immunotherapy has been given credit for doing any good in my case. The radiation was a very high dose short course (ten days) to prevent one of my lungs from collapsing in order to get me to treatment. We never had any thoughts of the radiation being curative.

There have been many off the wall theories about why I am alive but the only thing that seems to be constant is that no one really knows, including me. At first I was told I had two to three years to live, then it was one to two and finally I was told that if I was lucky I had thirty to sixty days.

However, I do have some thoughts about what have been a contributing factors. I learned early on that the individual has to be involved and totally aware of what is going on and why. What is being done and what are the results that are expected? In what period of time? How are you going to monitor the progress? What will happen if after half the program is done and we still see no results? I believe that the individual has to be the main focus of the therapy. The medical side cannot do it without the help of the individual and the individual cannot do it without the medical side. Remember though that the individual is the only one with everything on the line, everyone else has nothing more than emotional or scientific involvement.

If you are on a drug of some sort you MUST have a contact person twenty four hours a day seven days a week with NO exceptions, no answering machines, etc. When you are in trouble you need someone who knows what is going on to help IMMEDIATELY. I believe that the individual is the first line of defense and must make the very informed decisions that direct the others in their efforts to help and everyone must be working on the same page, same line, etc. Questions must be asked and answered in such a way that the individual understands what is going on and what to expect. My definition of a good patient these days is one who knows his disease and can discuss it with his physician as an equal not an alien, and one who stands his ground and demands to be treated with respect and demands the information necessary to make the decisions that just might save their life.

Knowledge is the cancer patients greatest ally and belief in what you are doing regardless of what anyone else says is vital. Once you have decided on your course of action you must put one hundred percent of your effort and belief behind it. If you are going to continually say, "why am I doing this, it's only going to fail anyway." than it probably will. However, if you have given it your best and it fails forget it and go on to something else, don't waste time with self doubts or hindsight. There is nothing back there, everything is in front of you. That's where your hope of survival is. It is NEVER over until the individual says it's over. Also understand that getting down occassionally is natural and normal. We are not stones. We are humans with emotions and if we didn't feel bad occasionally we wouldn't be human. As long as you are up and fighting fifty one percent of the time you can shed the tears and have the breakdowns the rest of the time. You earned them. I haven't found anyone yet that was overjoyed when told they have cancer.

Update January 2002

Earlier this year I had a heart attack. A silent heart attack that wasn't discovered until the cardiologists actually did and angiogram to determine the cause of my chest pains. They were almost certain I didn't have a heart attack and were surprised when they got in there and found that not only had I had a heart attack but that there were several arteries that needed immediate attention. One was completely blocked, but another vessel had grown as a natural bypass and was supplying blood to that part of my heart. Another was partially blocked and they used a balloon to open it and the third they used a stent to keep open. That in itself would have been enough. I went through rehab and did well. Lost fifty pounds and was in good shape, or so I thought.

Last December, 2001 I went for my annual cancer check up and got a clean bill of health just as I had for the past eleven years. For eight of those years I had a CT scan every visit from every ninety days to every six months to once a year. Three years ago my doctor left that institution and I was assigned another physician who was the head of the department. He felt comfortable eliminating the CT scans and relying on blood tests and physicals for my check ups. It seemed to make sense to me as you can't give a person a CT scan forever and I hated the barium and am allergic to the iodine. Every year all my tests were clean and all blood tests showed normal, until last year when I showed a slightly elevated LDH, this is different than HDL or LDL which are cholesterol indicators. They weren't concerned, or if they were, they never mentioned it to me.

This is where people need to pay attention and learn something! I was totally unaware of LDH, an enzyme, that apparently is a very non-specific indicator of anything. However, in the past it has been used as a sign there was a malfunction in either the liver or the heart.

My cardiologists eliminated any heart problems so we looked at the liver to see what was going on. The liver showed normal too. From there we did an ultrasound of the abdomen and to everyone�s surprise found a tumor about the size of a cantaloupe exactly where my left kidney had been removed twelve years ago. After that a CT scan with biopsy showed it to be metastatic melanoma.

As it turns out only recently, within the past year or so, it has been learned that LDH levels are a good indicator in people who have a history of previous solid tumors that there is a problem somewhere in the body with another solid tumor although it does not indicate where. I have done a lot of research on LDH and have found very little of anything on it. Most physicians are not aware of this and most aren't even aware of what LDH is and what it does. Apparently my physicians were at the cancer center because they wanted me to follow up on the high rating that I showed on my test this year which was way over the limits. However, they assumed it was heart related because of the heart problems I had last year. One of the problems with LDH apparently is that not all institutions use the same scale or standard as to what is high and what isn't. Last year my reading was 850 and this year it was 1250 but only last year was it considered high. Other places use a scale of between 100-250 for a person my age as the standard. However, they don't know what it means when it does show high and therefore more often than not do nothing if the liver and heart show normal.

So I am back in the fight after twelve years of thinking I was clean. No one has any idea how long this thing has been there but were are assuming no more than three years since the last clean CT scan. The lessons to be learned here is that you need to know what LDH is, and when it shows higher than normal to jump on your docs to make sure they look everywhere for tumors. Finally the lesson is that melanoma will do whatever it wants, when it wants, and there is NO time limit for one to say they are cured of this damned disease. You must always be vigilant and on the alert. I thought I was, and in truth I was, and still I find myself in the fight again.

Update: May 2002

In late January 2002 I went into the hospital for surgery for removal of the tumor plus my spleen, 1/2 of my pancreas, and part of my diaphragm. Fortunately for me the surgeons were able to unravel the tumor from my intestines otherwise they would have had to remove about eight feet of them too. I am just about back to normal routines and continue to be checked frequently to make sure nothing new has popped up or gone wrong.

Update: July 2004

Ken wrote to change his email address - he's doing well!

Contact Ken Shapiro

I hope this helps someone. There is obviously more but this is basically the story in short form. If there are any questions or help that I might provide please feel free to send me email at kashapiro@comcast.net

It’s been a while since I have updated this page and I have received numerous e-mails asking how I am doing, so I decided it was time. Since the last update I have had another heart attack and five stints placed in my heart. I continue to get my regular cancer check ups and so far everything remains clear as far as we can tell. My blood counts remain high for some unexplained reason but since nothing has happened because of it we are just considering it another weird thing that seems normal for me.

So much has happened over the past thirty years fighting cancer and now heart disease and I have learned so much. I turned sixty five last July and got smacked in the face with some of the down sides of long term survival. There is so much I didn’t know, didn’t understand. Something else thing people should be aware of in long term survival that I have learned over the years is that your doctors start to change. In my case some have died, others transferred to different institutions, and some have retired. As this process goes on and each time you get another doctor they seem to read only the past few years of your history and aren’t aware of the years before that. That can be dangerous to the patient and I now insist that my doctors read my entire history so they know what has transpired from the beginning. It is vital that your medical team be aware of the entire story not just one slice or part of it. This is something the medical side has to learn too. It might be time consuming and inconvenient for them but it is my life on the line not theirs and they need to know everything that has gone on in order to have an appreciation for how I got where I am.

I have decided to write a book about all the experiences, good and bad, over the past 30 years and am looking for a literary agent or publisher so if anyone out there knows of one let me know.

I have heard from many people over the years and appreciate all the messages. I hope my story has offered some hope to others facing the same problems.

Update January 2002

Update: May 2002

Update: July 2004

Contact Ken Shapiro

Update: June 2005

Update: Sept. 2007

Update: March 2008