Updated May 10, 2004
Today, Saturday February 28, 2004 is a good day. The sun is warm and abundant over the beautiful blue Connecticut skies. Feeling warm is one of the attributes that is necessary for my pursuit of good quality of life. The other attributes are having minimal pains in my abdomen, chest, groin, shoulders, not having fevers, and being able to breathe after minimal exertion. We have been successful in controlling most of these problems with pain medicine such as Oxycontine, Tylenol with codeine, sleep aids, stool softeners. But taking all that medication and narcotics totally knocks me out, and as a result, I either sleep, cat nap or rest most of the time. The breathing part is my biggest complaint as I need to sit down after walking to answer the door bell or something similarly mundane. Going upstairs one flight requires at least a 2-3 minutes rest once I reach upstairs. So there is a simple solution--I don’t exert myself too much. Once resting I am usually very comfortable, and that is what I strive for these days.
Today is such a day.
The regretful part today is that I couldn’t accompany my older daughter Rachel (13) to her league championship swim meet, so my overburdened wife Laurie had to do that too. At this point in my life, Laurie has to do EVERYTHING as I am basically resting all the time. Well, I do help with homework... On the other hand, I am sure that Laurie is enjoying watching Rachel swim today as that is a pretty good task. I hope she’ll beat all her personal best times (Update: since I wrote the above part, they have returned home and she DID beat her personal best in both events that she swam. Tomorrow will be three more events.)
The fun part of the day is having my younger daughter Danielle (9) here at home where I just nipped in her a game of “double” Sorry. Double Sorry is just Sorry for two players where each player gets two diagonal colors at the same time. Fun Fun Fun.
It is amazing just how fast I found myself in this condition. My cancer is almost 18 years old, but my current condition of basically resting around the clock is only two months old. My current relapse started in November of 2000, yet I was working, playing golf while carrying my clubs, doing yard work, helping around the house etc. till August of 2003, all with cancer actively present in my body. August 2003 is also when I found myself having to stop the palliative Oral VP 16 after taking it for 18 months. We briefly tried the other palliative option--Gemzar--for only about 10 weeks, but it was ineffective. That brings us to stopping all forms of treatment and to my present condition.
I am a 43 year old with multiple late relapses who has been very heavily pre-treated.
I got my degree in computer science in 1985. It was an ideal year to get the degree, and I got a job as a software developer with a great company. I also started dating my future wife Laurie, who I thought was jaw dropingly beautiful when I first saw her many months ago. I never thought that someone with my bad looks had any chance of dating someone that beautiful, but I was wrong. (Please note all of my good luck and fortune along the way).
The odds caught up with me, and my nonseminomatous tumor was discovered in 1986. That was followed by treatments and then remission. We got married in 1987. Despite chemotherapy, Rachel was born in 1990 through natural conception. Everything was great--we were in a brand new custom built house with a new born baby girl, but a nasty late relapse was in the cards.
When we discovered it, we didn’t really panic and instead treated it like a bump on our relatively smooth road. This was followed by more treatments and then another remission--this time for 10 years. These were 10 great years as during this time Danielle was born (late 1994), raising Rachel was a total delight, and I was taking part in great new technology at work and actually getting paid for it (I loved the stuff, and I don’t consider myself a geek).
Amazingly and totally shockingly another late relapse hit us in 2000. This one was far more shocking to both of us, but I still didn’t think it would kill me by any means. I just didn’t want to face the brutal treatments that were in front of me but I ALWAYS THOUGHT I WOULD EVENTUALLY BE ALL RIGHT.
The first step towards treatment in 1986 was an orchiectomy. My pathology was a mixed nonseinoma containing embryonal carcinoma and choriocarcinoma. I don’t remember this, but Laurie tells me that they suggested an RPLND. I refused since I didn't want to reduce my chances of having children. In 1986 an RPLND would definitely have reduced my chances, and we would have to use banked sperm. Ironically, I had banked the sperm before the orchiectomy. Luck was not with me and markers started to go up after a short time. This is when I faced my first encounter with chemotherapy. It was 3X PVB given as an inpatient. I escaped the RPLND.
In 1990, after 4 years of follow-up, I experienced severe back pains. I ignored them for a quiet a while. We ended up having a CAT Scan and found a late relapse. My new doctor in Connecticut (Dr. Orell) contacted Dr. Einhorn for an opinion. I had a new doctor since we had recently moved to this area. He sent me to see Dr. Bajorin in NYC, and the consensus was to do salvage chemo- 4X VIP. I believe the tumor in my abdomen was “gigantic,” and it surrounded, among other things, the Aorta. The VIP ended up doing a remarkable job in killing it. This was followed up by a post chemo RPLND by Dr. Sheinfeld. The operation took over 10 hours, and I was in the hospital for 10 days or so. The operation went very well and all tissue found in the abdomen was necrotic.
10 years of follow-ups (physicals, blood tests, cat scans etc) went by with everything being normal. At this point I was only seeing Dr. Orell once a year, and it seemed like a total formality. Cancer was the furthest thing from my mind...
Then in November 2000 I experienced more abdominal pains (my previous visit to Dr. Orell was January 2000 so the next one was due in less then 2 months). A cat-scan revealed the presence of yet another large tumor. This time the Vena Cava was involved. We contacted Dr. Bajorin and Dr Sheinfeld and proceeded with 4 cycles of TIP (Taxol, Ifosfamide, Platinum). The chemo went from February 2001 to May 2001. We followed that up with yet another RPLND surgery by Dr. Sheinfeld in July 2001 to remove the tumor (12+ hours). He had to remove the right kidney.
The pathology results this time were not nearly as good. Cancer was present on the opposite side (near the good kidney). My markers went down to normal for perhaps another 2 months after the surgery, but since then the AFP began to rise steadily. During this time the MRI did not show any abnormal activity, (AFP went from 4->8->16->21->22->31) but we knew the cancer HAD to be there somewhere. Eventually a PET Scan in February 2002 and another MRI confirmed disease at the celiac axis in the abdomen along with neck and shoulder.
At this point we went back to Drs. Bajorin and Sheinfeld was told that I had very few choices with only one having a very remote chance of curing me--High Dose Chemo with a bone marrow transplant at MSKCC. But at the same time they advised against it. They suggested palliative options such as Oral VP 16 or Gemzar to prolong my life. There was no more cure. Dr. Einhorn agreed with that totally. THIS IS THE FIRST TIME I REALIZED I WILL DIE FROM THIS DISEASE--I WONDER IF THAT IS DENIAL OR GREAT ATTITUDE FOR ALL THOSE YEARS (perhaps both?)
I took Oral VP 16 for almost 18 months with a few breaks in the middle (February 2002-Sept 2003). Till October 2002, my AFP steadily went down. (AFP 31->13.5->9.6->7.9->8.1). My October 2002 MRI showed that the previously noted mass lesion adjacent to the celiac axis was no longer identified. They now identified a new small right pleural effusion and small amount of ascites adjacent to the right lobe of the liver. This was all good. I was back to work full time, doing recreational activities, enjoying the kids, vacations, etc. The trend started to reverse after about a year when the AFP started to go back up. We stayed with Oral VP 16 for another 6 months, eventually stopping in Sept of 2003 when we discovered large bilateral pleural effusions.
In October of 2003, the fluid necessitated placement of pleural catheters in both sides of my chest so I would be able to drain the fluid at home. The catheters are still there, and we drain on average 120 ml per day per side. I do the procedure every third or fourth day so the accrued volume is 3 or 4 times that amount.
On the chemotherapy front, I started to take single agent Gemzar, but we decided to stop it after about 10 courses (middle of December 2003). We ended up skipping a few weeks during the run due to high fevers and lack of access to my veins. The last AFP was up to 137 (it was 67 when we started Gemzar). The last MRI showed, some new suspicious activity, slight tumor growth and growth of my Ascites. This all lead us to a decision to stop basically all treatment. I have not had any treatment since the middle of December.
Left with no other options, we decided to go down perhaps the final path- a clinical trial. I saw Dr. Bajorin in January 2004 and we discussed a new drug BMS-247550 (Epothilone B). He felt that my current situation makes me ineligible for this highly toxic drug as one of the entry criteria is to be active and on your feet for at least half the waking hours (which I am not).
For those that are interested, here is a quick timeline/recap:
1986 I/O pathology mixed -> Embryonal + Choriocarcinoma
1986 3X PVB
1990 Recurrence #1
1990 4X VIP
1990 RPLND #1
2000 Dec. Recurrence #2
2001 Feb to May 4X TIP
2001 July RPLND #2
2001 Sept to 2002 Feb AFP Values on the rise 4->8->16->21->22->31
2002 Feb Petscan shows disease in Abdomen, neck and shoulder. Abdominal MRI Shows tumors at the Celiac Axis
2002 Feb Started Oral VP 16
2002 Feb to Oct 2002 AFP Values on the decline 31->13.5->9.6->7.9->8.1
2002 Oct MRI of Abdomen no longer identifies the previously noted mass at the celiac axis. However, it now identifies a new small right pleural effusion and small amount of ascites adjacent to the right lobe of the liver.
2002 Oct to 2003 Jan AFP Values on the rise 8.1->12->18.4
2003 Jan Stopped Oral VP 16
2003 Feb Numerous Scans (PET Scan, MRI, CAT Scan) show no significant abnormalities/changes.
2003 March AFP Value 27
2003 March MRI of Abdomen shows a few slightly enlarged nodes
2003 March Resumed Oral VP 16
2003 July Pet Scan shows no abnormalities
2003 July MRI show no significant change (probably misread)
2003 July Stopped Oral VP 16
2003 August Severe dyspnea
2003 Sept MRI show no significant change (probably misread)
2003 Sept MRI re-read show 2 liters of fluid in the right lung, 1 liter of fluid in the left lung
2003 Sept Thoracentesis- removed 2.4 liters of red/orange fluid from the right lung
2003 AFP Values Jan 2003 to Jan 2004 18->27->29->32->50->67->135