Just after my 40th birthday, in April, 1996, I noticed a hard, painful lump under my left nipple. At first, I thought I had a pimple. Then it came up on the other side too. On the urging of my wife, I went to the doctor. My GP acted concerned and checked me thoroughly. He told me I had a hormonal imbalance of some sort. He asked me if I smoked pot. I said I did, but Bill and I never inhale. (Funny, huh?) He asked me if I used steroids. I did lift weights but never used drugs of any sort. He did standard blood tests for testosterone and estrogen and my levels were within normal ranges. I was referred to an endocrinologist. The endocrinologist asked the same questions, felt me all over and did another blood test. It came back two weeks later. She called me into her office (after refusing to answer questions over the phone) and told me I had cancer. It was not one of my better days.
After a cat scan, testicular ultrasound,x-rays and a needle biopsy they determined I had anterior mediastinal choriocarcinoma. Basically that means that my primary tumor was sitting on my heart. I also had a chest x-ray that looked like I had six or seven large polka-dots on each lung. Fortunately, the cancer had stopped there and had not yet spread to other parts of my body. The oncologist said there was nothing in my head. (I'm still trying to find which one of my business partners told him.) The hard nipples which had warned me were caused by the rise in HCG, a sex hormone usually found in pregnant women which is a marker for this type of cancer. ( If I used one of the home pregnancy tests I show up as pregnant!) The oncologist who first diagnosed me referred me directly to Memorial Sloan-Kettering. He realized that this rare cancer was beyond his ability to treat. He also told me I had a 20% chance of survival. I have two small children. This was not what I wanted to hear, but was determined to fight on anyway. I was going to be hard to kill.
The doctors at Memorial, where I went the next day, were more optimistic about my survival prospects: 50%-60%. They booked me for admission the next week. The next day, however, I had sharp chest pains and was admitted immediately to Memorial. They began BEP, the standard testicular cancer chemotherapy the next day. My HCG hit 72,000. Zero is normal for a male. After the first cycle of chemo, I was given a catheter in my chest and stem cells were removed and saved. I also developed a septic infection which gave me convulsions and a 105 degree fever. Unfortunately, I knew that septic infections were potentially deadly. It took the infection control doctors five days to isolate the bacteria that was causing this infection and find the right antibiotics. By then I had had two episodes of convulsions with steady 103 to 105 degree fever and was pretty scared. My wife was scared too. Apparently, watching me turn purple and thrash around on the bed with several nurses holding me down was not fun.
After my second cycle of BEP it was clear that it wasn't working. My doctor at Memorial switched me over to a new high dose protocol. Two cycles of Taxol and Ifosfamide followed by three cycles of high dose VP-16 and Carboplatin with stem cell rescue. I was told I received the largest doses of Carboplatin ever given at Memorial. What an honor! The cycles were only two weeks apart to maximize the effect on the cancer. My cancer grows really fast so it is necessary to really beat on it to kill it. I managed to make it through the high dose protocol with few problems. I stayed pretty much on schedule and developed only one light fever in spite of the fact that I went for weeks at a time with virtually no immune system. My white count hit zero during each high dose cycle and my platelets were so low that large purple bruises would appear spontaneously on my arms and legs. I required regular transfusions of red blood and platelets. I also used $600 per day of GM-CSF a biotech drug to enhance the immune system. Without that, I would have been dead from the chemo instead of the cancer. I think I used over $30,000 of GM-CSF. Fortunately, Memorial gets the drug for free. Most of this was done inpatient at Memorial so I got to know the nurses on the 8th floor real well. I love all of them.
By now it was December, 1996. Just before Christmas my HCG hit zero. I had surgery to remove the remaining tumor from my heart and lungs. the surgeons took the pericardium off my heart, along with the remaining tumor, and replaced it with Gore-Tex. (My emotions are now water-proof.) They also took 13 tumors out of my lungs. They told me all my cancer was gone and the tumors had all been dead. I went home for Christmas believing that I didn't have cancer any more. In spite of being bald, skinny, scarred, and generally beat up, I had a great Christmas. By February I was strong enough to schedule a much needed vacation with my family to the Bahamas. Before I left, I had a check-up at Memorial.
My oncologist called me and told me that my HCG was 500. The cancer was back. I had never been this scared before. I had been told that if I failed the high-dose therapy, there were no alternatives other than death. It was hard to even look at my kids without crying. Since no tumors showed on the cat-scan, or on any of the other tests they ran, my doctors told me to go ahead to the Bahamas for two weeks. We had a very strange vacation in a beautiful place that surrounded my terror with a kind of peace. During this time I began to meditate, which for some reason made the terror bearable and brought me a form of inner peace. I'm not at all religious. All I can tell you is TM worked for me during this very difficult period. We didn't know if the cancer was just in one place or all through me body. Obviously, I feared that I would come back any they would find it blooming like deathly flowers everywhere.
When I went home I immediately went into Memorial. The new cat-scan showed that I had only one golf-ball-sized tumor in my left lung. Surgery was scheduled to remove it. This tumor had gone from invisible to golf-ball in three weeks. Clearly this cancer was fast moving. Just before the surgery, my HCG was 9,200. After the surgery it fell along a beautiful steep curve to 20. We had an optimistic house again. Then it stopped going down and began to rise. There must be more. The terror returned. I knew that Memorial couldn't help me anymore. My doctor spoke of a new protocol for a drug called PZA that was stuck somewhere in the bureaucracy at NCI. It wasn't available yet, and I needed it NOW. I got on the internet and looked up every doctor who had ever done a clinical trial for testicular cancer. I called them all. My first call was to Indiana. I had spoken with Dr. Einhorn several times during the course of my treatment at Memorial to make sure that he agreed with what we were doing, so he knew who I was. Dr. Einhorn had a drug called Gemcitabine which had been used for Pancreatic Cancer. He had had success with advanced cases like mine who had failed everything else. Yale had a new drug called MDL that was similar to Gemcitabine and also suggested a long Taxol drip. Since I already had bad neuropathy in my feet from Taxol and Carboplatin I wasn't thrilled with that alternative. There was also a drug called CPT-11 in Philadelphia but CPT-11 is very toxic. Gemcitabine is not very toxic. I started the Gemcitabine in April, 1997. So far, since I started my HCG has risen from 1,400 to 2,300. But they told me it would go up for the first couple of weeks. Let's hope for the best.
I'll add more to this as I progress. Hope it helps someone. All the best, Mark
Editor's note: Mark passed away December 26, 1997 after a long and valiant
fight...his attitude and determination were simply unbelievable until the end.
I never got a message complaining or expressing anything but positive thoughts,
yet I know he knew how serious his situation was. I will miss him...
The following tribute was offered by one of his TC-NET friends...
I wanted to pass along the sad news that one of our brave friends has lost the
battle against TC. Some of you may remember correspondence with Mark Lubben
over the TC-NET. Mark had extragonadal TC and had a poor response to chemo.
He was originally diagnosed a year and a half ago, and fought a very brave
fight. He was absolutely determined to conquer his illness. When the
treatments didn't work at MSKCC, he consulted Dr. Einhorn at Indiana. When he
still did not show a response to additional treatments, he explored treatment
options in Paris and with various biotech protocols. Despite it all, he ran
out of time. He was to start an experimental protocol with a new biotech drug
right after Christmas. Unfortunately, he died on December 26.
Mark and I became friends through his original postings on the TC-NET and on
the AOL testicular cancer post group. We spoke frequently on the phone and
offered each other emotional support. I became concerned when I hadn't heard
from him in a while (he had developed mets to the lungs and brain as well as
spread to the bone). His wife called me tonight with the sad news. Despite
his increasing debilitation, Mark remained positive, and in fact, he was most
positive the last time I spoke with him. He was excited to learn of this new
experimental trial and couldn't wait to start it.
I wanted to pass along this sad news for those of you who may have seen or
even responded to Marks postings, mostly many months back. It also is an
example of how lucky those of us are who have responded well to the
treatments, and for us not to get too complacent about TC being a curable
cancer. It is often (usually) curable, but not always and not for everyone.
Here's to Mark's courage and his tenacity. I will miss that.
Wilfred van Gorp