Kenneth Shapiro – 34+ 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 [email protected]
Update: June 2005
On June 29th of 2005 I had a heart attack. Luckily for me I knew what was going on as I had the classic systems of severe chest pain, etc. I took several aspirins, called 911 and was taken to the hospital where they performed an angioplasty, inserting two stents in my heart. Over the past several years I have had three other stents placed in my heart so I now have five.
For some reason since my last major cancer surgery my blood counts have been higher then normal and this has been a source of concern for my physicians. Whenever a person has their spleen taken out their counts skyrocket for a period of time and then come back down to something near normal. For some reason mine remain high and there has not been anything to explain it. On the other hand nothing else has happened because of it so as time goes by the opinion seems to be that this just might be normal for me.
Update: Sept. 2007
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: March 2008
Since my last update I have had another heart attack, a small one, not very impressive at all. However, I did turn sixty five and have walked into another world it seems. When I retired I was thirty five years old and had less than three to six months to live according to some of the best doctors in the world. Since that time I have had several recurrences and have been told I am going to die again and again, but I didn’t. However, now that I turned sixty five my disability income has come to an end and I need to find a job. It is amazing how people respond to the idea of my cancer. It is almost a palpable response silently saying I am now automatically the second most qualified for the job. They cannot say that as it is against the law but you can see it and feel it.
I am learning that the experience of fighting cancer can be easier than the fight to overcome the perceptions of people who have had it.
Update: September 2011
It has now been nearly thirty four years since my original diagnosis. As I look back and see what has happened even I am amazed that I am still alive. But for whatever reason I am. For whatever reason things just seem to keep happening and, sometimes in a round about way, seem more often then not to be related to melanoma. Even though at first glance sometimes they don’t seem to be. To be honest I haven’t had a full cancer check up in almost three years because all these other other things have gotten in the way. We have done a few scans and my hometown doctors try to keep track. However, the one doctor I have had from the very beginning retired because of some medical issues he has and I now have no-one that has been with me from the start, at least medically, and knows my complete history. In fact, right now the only people that have been with me from the start are my wife, son and brother. Since my son was only a year old at diagnosis he doesn’t really remember the early years and I am glad for that because I am afraid of the effects it might have on him. My brother lives in Canada and although he has been tremendous in his support through everything there is only one person who really knows, who has really lived it with me, and that is my wife. I feel bad for her because of the life she has been forced to live because of me. There are few, if any, records of someone having survived what I have over such a long period of time. Having gone through what I have people don’t understand the feelings one goes through. Being a long term survivor is one thing, being in the category I am, with the continuous nature of recurrences and the consequences from these occurrences has a different effect. There are no statistics for people like me and there are no explanations either. One might think I am ungrateful or unappreciative of the fact that I am still alive. However, I have always maintained that we are people, flesh and blood, not rocks. We have feelings, we have ups and downs and there are low points, and even now I am not immune from them, including things like survivors guilt. It is especially hard when a young person or someone who has done many good things in their life and dies, while I continue to go on, than it gets to me and I ask the question I swore I would never ask and that is the why me question. Of course the only answer is why not me. But even here I don’t comprehend how in the world I have remained alive. When people ask me I tell them that it has to be a cooperative thing. I am not stupid enough, nor arrogant enough to believe that I am mentally capable of achieving the results we have gotten to this point on my own. I always tell them that it MUST be a cooperative affair between the medical side and me. However, I am stupid enough and arrogant enough to expect that when there are problems I should be the center of attention as far as the medical side is concerned. I believe that we need each other and that neither can do it alone. If the medical side feels I should be on some sort of drug it is me that suffers the side effects. They go home, have a nice dinner and evening with their family while I might be going through hell from the side effects of the drugs they have me on. They chose this profession and when they prescribe something for a patient they should not be able to just go on to the next patient without worrying what the effects are that he his work has on you. I think the medical profession has slipped into an area where they feel they are the contractors that do the work and have no responsibilities beyond the responsibilities they have in taking care of an object, something that is part of their business inventory and nothing more. Sorry, but I disagree. They need to be working hard at all times to make sure that if they have a patient on something that is causing horrible side effects they have a responsibility to be working hard to make sure those responsibilities are met 24/7. They might not be successful in ameliorating the side effects completely but it is amazing what just the knowledge the patient has that their doctors and nurses are trying their best to help you get through this can have on your ability to actually get through it. When the cure is worse than the disease there is something wrong. If doctors and nurses don’t understand this they should be in a different profession. I also understand that my perspective is different than that of a newly diagnosed person who is frightened out of their wits when given the diagnosis, or told there is nothing more that can be done, that you are going to die in a short period of time, all things that I have been told to me on more than one occasion. Being told I am going to die really has little effect upon me now because I have been told this so many times. Perhaps I am just stupid enough and arrogant enough to believe that I can beat it again but I also understand that it is going to take a team effort and I have gotten to the point where I demand things that make the medical side annoyed and believe that I am being difficult. To bad, it is my life and if I am going to give the maximum effort into saving it I expect the same from them. Obviously this is not always going to be the case because at some point I am going to die of something but not without having put up one hell of a fight. With the retirement of the one physician who was with me from the start I feel isolated and don’t like it. I feel the responsibility of doing my best to fight the disease should be my main obligation. Unfortunately more and more today the patient has to take the lead and make sure questions are asked and answered so they are understood, that physicians need to know the whole story and not just the small part that pertains to them because, as I mentioned earlier, physicians have a habit of reading just the highlights of the past few years and then just those highlights they feel pertain to their involvement in the case. The one doctor I had from the beginning was my traffic cop, the one who said o.k. this is the situation and we need to call in this specialist or that specialist. He was also an old type physician who actually cared for his patients well being and how they are doing concerning what is being done to them. Now I am without him and like I said I don’t like that. Patients more and more have to assume more responsibility for their own care and seeing who they should see on their own. So many doctors these days don’t want to touch anything outside of their direct specialty that the focus on the whole patient has become a lost art which leaves me, the patient, feel like I am floating in a sea of islands hoping to find one doctor at a time who is willing to take care of the problem at hand while ignoring the overall genesis of the problem and just taking care of the immediate needs at that particular time. It is frustrating and I don’t think the medical profession has any idea how isolated they are making themselves and especially the individual patients. A great example of this is a round about story that eventually winds up right at the beginning with my original cancer.
I was an athlete most of my life in one way or another, not great, but hard working and diligent. This has given me the same types of problems millions of others like me have had with bad knees, ankles etc. As it turned out I needed a knee replacement because I was having a hard time walking and got exhausted just walking through the grocery store. I went ahead with the knee replacement and had no problems. However, I still was getting exhausted to the point that I was having a hard time breathing. One day it became so bad my wife took me to a walk in clinic where the people there did a cursory examination, when I mean a cursory examination I mean the nurse checked me out and the doctor, without ever walking in the room or even putting a on stethoscope on me made his determination while standing in the doorway of the room I was in. He informed I had a pulmonary embolism caused by the knee replacement and called an ambulance and rushed me to the hospital, where I stayed in the emergency room for twelve hours while they tried to figure out what the problem was. As in most emergency rooms they had other patients and would get to me as they could. I was admitted to the hospital after the emergency room physicians said they couldn’t determine the cause of the problem. They didn’t think it was an embolism but didn’t know what was going on either. This went on for two days until a consulting gastroenterologist said he didn’t know what was going on but there was definitely something else going on that they weren’t looking at but he didn’t know what it was. Finally, my cardiologist got involved and did some tests and found out I was suffering from congestive heart failure as well as pulmonary hypertension. In short I was drowning in fluids in my lungs and massive amounts of fluids around my heart making it hard for me to breath. It never had anything to due with the knee replacement.They took care of the problems by removing over eight pounds of fluids in my lungs and surrounding my heart and once again I recovered. After this my cardiologist told me there was a problem with my aortic valve that was slowly deteriorating but was not at the point where they needed to do anything about it. About this time I decided that I needed to get to the place that sees this sort of thing the most and just as I have done with the cancer, going to M.D. Anderson, I made the decision that The Cleveland Clinic was the place for me to go and have a complete check of my heart problems. As it turns out the cardiologist there made the determination that it was necessary to replace the aortic valve but she needed to clear it with the surgical team. They were not in agreement at that time because there were complicating issues that would make the surgery not worth the risk at that time. What were these issues? Well going back about twenty years I had radiation for tumors in my lungs from the melanoma, which over the years was building up scar tissue around my heart and makes the surgery more difficult and the surgeons felt the risk reward was not there on the reward side yet and wanted to wait to do the surgery while saying it eventually was going to have to be done. Apparently when radiation is given, in particular to the mediastinum area, it can cause side effects, sometimes in the short term and sometimes in the long term. The congestive heart failure and pulmonary hypertension took a long time to appear but once discovered were not the worst of the problems. The worst of the problems, I was either told about and don’t remember when I was turned down for the heart surgery the first time at the Cleveland Clinic or didn’t fully understand what I was being told and why. But it all comes back to the cancer and, in this instance, the radiation. During the period from the time I underwent the radiation to the present time when I had the heart surgery, scar tissue was building up around my heart and basically slowly choking my heart from the oxygen it needed. It slowly got worse until this past May when the doctors at the Cleveland Clinic discovered that not only was my aortic valve deteriorating but the mitral vale had suddenly started deteriorating at an alarming pace and they decided now was the time to do the surgery. We went ahead with it and when they got in there found that the scar tissue was far worse than they thought and the operation which was scheduled for four hours took over eight hours to complete. Now I have cow valves where I once had my own human valves. While this seems like a heart problem, and it is, the root cause was once again the melanoma because the problem I had developed is one of the side effects of the cancer treatments I have taken. The significance of this is simply that even when you are ned(no evidence of disease) you still need to be aware of what’s going on and why and what correlation, if any, it has to the cancer.
This just goes to the point that you have to do what you have to do at the time and worry about the consequences later. At the the time it was necessary for me to have the radiation, not for any curative purpose but because I had major tumors in my lungs and one of my lungs was about to collapse. In order to stop this they gave me a high dose short course treatment of radiation. High doses for ten straight days in order to stop the growth of the tumors and allow me to get on the clinical trial they wanted me on and not have to worry about stopping the trial and taking care of the lung. The short term side effects of the radiation are another story which I won’t get into here. The long term side effects are what have caused me the most problems.
It also took me to do my own research of radiation on the heart to fully understand what had happened to me. So again it is important for the patient to become an expert is their own disease and be able to discuss it with the medical team from a source of knowledge. It has taken me years to learn this and sometimes I learned the hard way that the local physician who sees this disease once or twice a year is NOT the person you need. You need to be in the place, whenever possible, to see the people who see this disease the most. Unfortunately this is not always possible because of finances or the fact that we are being forced to give up our rights as patients by the insurance companies who can veto our going to a major medical center and force you to stay local and deal with people who are way behind the times and usually prescribe the “standard of care” which with melanoma is usually straight chemo, which has proven to have little effect upon the melanoma. However, you can still consult, on your own if yours doctors won’t do it for you, with some of the finest hospitals in the world such as M.D. Anderson in Houston, Texas and The National Cancer Institute in Bethesda, Maryland which are both self referring institutions, for their opinions and advise on what you should be doing.
So to end this update, I am still here, missing one kidney, my spleen, half my pancreas and with new valves in my heart that aren’t even human. I have had major tumors in virtually every organ and so many subcutaneous ones I have lost count. I am virtually being taken apart and in some cases being put back together and in others such as the missing kidney, spleen and half my pancreas living without them. I wish I could make some sense out of all of this but I can’t. I don’t have the answers and the medical side doesn’t have the answers but the important thing to understand is THAT I AM STILL HERE!!! That should give everyone who reads this hope that no matter what happens with the disease there is always hope as long as the individual feels there is hope.
Update: October 2012
My Father Ken Shapiro passed away on Oct 17th 2012, from Kidney Cancer. As my Dad said “When I die, I beat the Cancer and it dies with me.” My Dad beat the Cancer and it died also. He was a hero of mine and to many he helped.
-Jared K. Shapiro
This CancerGuide Page By . © Kenneth Shapiro
Last Updated: October, 2012