Well here's my story - in September of 1996 I began experiencing some mild lower back pain. By mid-September that back pain had intensified to a point where I was in tears. My doctor assumed it was just a pinched nerve. The pain medication which he prescribed could not stop the pain. I ended up in the emergency room of a local hospital. The next day I was admitted. I was placed on a "morphine on demand" system, also known as a PCA pump. The pain continued to worsen, as did my overall condition. After a week in the hospital, I developed symptoms common to pneumonia. I was placed on all of the necessary antibiotics but unfortunately, my condition continued to deteriorate. My wife was called to the hospital one night when my heart rate exceeded 270 beats per minute. I had to be cardioverted. A series of tests was performed, but nothing was found. The doctors decided to perform a thoroscopy, a surgical procedure to investigate the cause of all of my complications. I have a 12 inch scar on my back to prove it. What they found shocked everyone - a large malignant tumor in my mediastinal cavity (the region between the lungs behind the sternum).
Within days I was life flighted to the Cleveland Clinic. A joy ride which cost my insurance company $7500. I can now say that I saw the Cleveland skyline at night from a helicopter - although I wish it were under different circumstances. The cancer was diagnosed as a Germ Cell tumor - a rare extragonadal form of testicular cancer. Further tests confirmed that the cancer had metastasized to the sacral area of my lower back, in addition to four other sites on my upper spine. We also discovered that the cancer was producing a tumor marker called alpha fetoprotein (AFP). The level in my blood was 137,000 at its highest point. In a normal male the AFP level is between 0 and 10, i.e. undetectable. A CT scan of my chest revealed a tumor that was eight inches in its largest dimension. I was started on the standard chemotherapy regimen for this type of cancer, the BEP regimen (Bleomycin, Etoposide, and cis-Platin). The chemo would last for 3 months. I experienced all of the side effects associated with chemo. Within 2 weeks of the first treatment I had lost all of my hair. I had a port-a-cath (a device for which I am very grateful) placed in my chest due to the difficulty in finding veins in my arm. My AFP decreased as the treatment proceeded. At the end of the 12 weeks, my AFP had dropped to 168. Good but not good enough.
Additional chemotherapy was necessary. I started a second regimen of chemo known as VeIP (Vinblastine, Ifosfamide, and cis-Platin). I received 1 week and a day of VIP before it was determined that this chemo was not effective. My AFP level had started to rise again. At this point we agreed to try another type of chemo known as Taxol. (Taxol is derived from the bark of a tree in the northwest- home to some endangered bird. Our apologies to the environmentalists!) I received 2 rounds of Taxol, the first of which was accompanied by adriamycin. Unfortunately, my AFP continued to climb. Five and a half weeks of radiation of the sacral area in my extreme lower back was the next step. My AFP started to drop. It was decided that thoracic surgery to remove the tumor from my chest should follow. The surgery was scheduled for April 28. The surgeon truly frightened my wife and I with regards to the risks of surgery, but we had no choice. The surgery was very similar to open-heart surgery in that an incision had to be made through the sternum. The tumor was successfully removed and a biopsy showed that there was no viable cancer in the tumor - good news at last! My AFP dropped to 352 the day after the surgery. The sudden decrease may indicate that there were some stray cancerous cells in the chest mass still producing the AFP. The recovery was not as bad as I had anticipated - but still not pleasant.
On to the next step - my doctors decided to proceed with the most aggressive course of action - a stem cell transplant. The stem cell transplant is a procedure which is quite similar to a bone marrow transplant except that the donor of the cells is also the recipient. Therefore, there is not a risk of a transplant rejection. I received two doses of Taxol in order to prime my body for stem cell collection as well as to keep the cancer under control. I received my first dose of Taxol on May 27 of 1997. Stem cell collection began on June 10 immediately after the placement of my Hickmann catheter. Stem cell collection after the second dose of Taxol was enough - I had the required 2 million stem cells necessary for the transplant.
July 16 was my admission date for the transplant. I was extremely nervous. My AFP had dropped to 185 and we were hopeful that the cancer was dead - that the transplant was just for insurance. The chemotherapy regimen was Ifosfamide, Carboplatin and Etoposide (a.k.a. ICE). The chemotherapy was devastating. I was vomiting after the first 2 hours of treatment - I experienced awful headaches as well. Fortunately, I do not remember very much. My wife spent every day with me. I thank God for her and her strength. I was released on August 5th - 21 days of HELL.
On August 26 I was readmitted for a pericardial effusion (fluid around the heart). I had approximately 750 ml of fluid drained - it was not a pleasant procedure. I was able to watch the entire procedure - not one for those with weak stomachs. Unfortunately, my AFP had risen to 420. The transplant did not work. We were devastated. Less than a week later my AFP increased to 795. The doctors told us that they had no other options. We were not prepared for this at all. We cried...........and cried. But we were not ready to give up. We made the decision to seek a second opinion.
After a quick vacation to Key West, my brother drove my wife and me to Indiana University to speak with Dr. Nichols. In addition, I decided to change my diet and pursue some alternative measures - I thank my brother for providing his superior research skills in developing this plan and my wife for her tolerance and cooperation of the diet. I will not bore you with the details- but I started using shark/bovine cartilage, mushroom extracts, herbal teas, and several other antioxidant vitamins. In addition, I stopped eating red meat, pork, refined sugars, fried foods, and placed several other restrictions on my diet.
Dr. Nichols recommended weekly gemcitabine treatments, followed by oral etoposide treatments if the gemcitabine failed to affect my AFP. Oddly, my AFP stabilized over the month of September with no treatment whatsoever. My gemcitabine started on October 3 and continued for three treatments before the doctors at Cleveland decided it was not working. My AFP rose from 730 on October 3 to 1250 on November 14.
My wife and I decided to take a break from treatment and enjoy the holidays. We also took a wonderful trip to Maui - I recommend vacations whenever possible during breaks in treatment - take advantage of every opportunity you have in your life - I do not think I need to explain... My lower back started to ache over the month of December - we were concerned. I had my AFP measured on December 29. It increased to 3000.
On January 7, I had a series of tests including an MRI of the spine, CT scan of the chest, bone scan, and pelvic x-rays. The MRI showed that the tumor in my sacral area had started to grow - thus explaining the increased pain I was experiencing. My oncologist informed me of the news and referred me to a new orthopedic surgeon at the Cleveland Clinic, Dr. Robert McLain, whose specialty is tumors of the spine and sacral area - how fortunate for us. He also referred us to another radiation oncologist, Dr. Crownover. Dr. Crownover is working with alternative radiation therapies. First we met with Dr. Crownover, who offered us two radiation options as long as surgery was possible. Thus, my fate would lie in the hands of the surgeon, Dr. McLain. We met with Dr. McLain the next morning - he approved me for surgery (as long as radiation was possible). I was ecstatic and frightened at the same time. Dr. McLain would be removing half of my sacrum and a portion of my pelvic bone. Surgery was scheduled for January 15, one week to prepare myself.
January 15 at last. My AFP was drawn before surgery. We would later find out that it had dropped slightly to 2450. The surgery took 9 grueling hours. Dr. McLain performed what I believe is called a hemisacrectomy - I also lost my S2 nerve and part of my pelvic bone. The three vertebrae at the base of my spine are now fused. There are two rods which extend from my spine to the pelvic bone in order to stabilize my pelvic area.
The surgery took a toll on my body. I was in the intensive care unit on a respirator for 12 hours due to pain and swelling in my throat. I had intense pain - I was thankful for my trusty morphine PCA pump. I had the misfortune of developing an infection in my incision. Two surgeries followed to wash out the incision. Twenty-one days after being admitted, I was discharged from the hospital. Since my infection was very deep, I was sent home on IV antibiotics. My AFP dropped to 1250 three weeks after the operation (February 4).
My AFP increased again on February ?? to 2900. By March 2 the AFP had risen to 3250. I began radiation on March 2 at the Cleveland Clinic. I was able to receive an additional 10 radiation treatments to my pelvic area because of a new technique known as PEACOCK. I am the fourth person in the United States to receive this type of radiation to an area other than the head. The PEACOCK treatment delivers radiation from a number of angles (360 degrees) around the target, and minimizes the exposure of 'good' tissue to the harmful radiation. On the last day of treatment, March 13, my AFP had dropped to 2100.
On April 17 my AFP dropped to 667. We are praying and hoping that the trend continues.
Remember to stay positive - I will be the first to admit that there are bad days... but there is always tomorrow!
I would like to mention and thank my doctors at the Cleveland Clinic: Dr. Tarek Chidiac and Dr. David Peereboom, my oncologists; Dr. Patrick Kupelian and Dr. Richard Crownover, my radiation oncologists; Dr. Thomas Rice, my thoracic surgeon; Dr. Fredrick Jaeger, my cardiologist; Dr. J.W. Tomford, my infectious disease doctor; and Dr. Robert McLain, my orthopedic surgeon.
Editor's Note: Sadly, neither the radiation treatments nor any further experimental chemotherapy stopped the cancer. Dean Vernacotola died on January 15, 1999. Sigh.
For whatever it is worth, here is what Dean had to endure between his diagnosis and June of 1998...
Dates, Treatments, and Alpha Feto Protein (AFP) Values
10/15/96-1/6/97
4 cycles BEP
10/15/96 AFP=137,000
1/14/97 AFP=170
1/20/97-1/25/97,2/10/97
1 cycle + 1 day VIP
1/21/97 AFP=195
2/11/97
1 cycle Taxol & Adriamycin
2/11/97 AFP=420
2/19/97 AFP=574
3/8/97
1 cycle Taxol
3/2/97 AFP=1021
3/11/97-4/18/97
28 Radiation treatments to right sacral area of lower back
3/14/97 AFP=1543
4/1/97 AFP=1171
4/8/97 AFP=891
4/14/97 AFP=819
4/28/97
Thoracic surgery - removal of mediastinal mass
4/29/97 AFP=352
5/15/97 AFP=280
5/27/97
Taxol (to prime for stem cell collection)
6/16/97
Taxol (to prime for stem cell collection)
6/16/97 AFP=129
7/16/97-8/6/97
High Dose Chemotherapy (I.C.E.) with Stem Cell Transplant
7/16/97 AFP=185
8/26/98 AFP=420
9/2/97 AFP=795
10/3/97-11/14/97
5 doses of Gemcitabine
10/3/97 AFP=725
10/31/97 AFP=950
11/14/97 AFP=1280
12/29/97 AFP=3000
1/15/98
Hemisacrectomy - debulking of tumor in the sacral area
1/15/98 AFP=2450
2/4/98 AFP=1250
3/2/98-3/14/98
10 doses of Peacock radiation to the sacral area
3/2/98 AFP=3250
3/14/98 AFP=2100
4/17/98 AFP=667
6/12/98 AFP=2893