Tom from Pennsylvania - Dx 2002, RIP 2021
Posted: Sun Feb 17, 2008 6:52 pm
December 6, 2002 is when we first heard the words 'You have Cancer'. I had no idea what ASPS was, but I would soon know more about it than the first doctors I went to visit. In fact, the doctor who diagnosed us in State College, Pennsylvania admitted that my case was the first case of ASPS that he had seen.
On the drive home from the diagnosis I felt a lot of pity for myself -- At the time I was 27, married with a son and a child on the way. I had no idea what the next step was, but I finally had an answer for the shooting pain in my leg that had gotten progressively worse over 9 months.
The doc that diagnosed me said that the tumor's closeness to the spine would make surgery difficult. I questioned whether the 9 months I fought my insurance company to pay for a CT Scan made a difference in the disease's progression. Prior to the CT scan, neurologists explained that a tumor was 1 in 10,000. It was most likely a slipped disc or something else pinching a nerve --the CT Scan will just assure that its not cancer and give us the reason for the pain. I knew my fate prior to diagnosis as the neurologist refered me to a specialist to interpret the CT Scan. I looked up the specialist in the hospital directory --surgical oncologist it said --Doomed I thought...
I owe a lot to my wife and Mom. They've been the researchers -- I started the journey in Pittsburgh with Doctor David Bartlett. He is still one of my favorite docs. He performed my first surgery and removed a 13cm tumor from the retroperiteneam. Because the tumor twisted around nerves, he had to remove the femoral nerve The femoral nerve is what causes the quad muscle to fire --Essentially if I put weight on my left leg without locking the knee I fall. Because the doctors had never seen a person without a femoral nerve, they didn't know what to expect --I heard everything from 'you won't walk again', to 'you will walk only with a walker', to 'you should be fine, just not able to run'. After a lot of PT, I am happy to report that I walk fine and most people can't tell of my 'problem'.
After the surgery I enjoyed a period of about 3 years with no new evidence of disease --I had some spots in the lungs that didn't change, so the doctors following me were reluctant to diagnose them as cancer. In the summer of 2005 a met showed signifigant growth. I was referred to Dr. James Luketich in Pittsburgh who removed the met laproscopically.
Post surgery I consulted with doctor Robert Maki at Sloan Kettering and Doctor Jeffery Morgan at Dana Farber. Doctor Maki oversaw treatment of Nexavar. I saw disease stabilization for 5 months and then growth again. That is when Doctor Morgan suggested a new trial --ET 743. He did a little research and found that FOX CHase Cancer Center in Philadelphia was doing the same trial and was much closer to our home. I embarked on an ET 743 and Docetaxil trial oversaw by Doctor Margaret Venmehren. January of 2008 was my final treatment. It seemed to stabilize the disease and there was slight shrinkage of one spot.
The chemo gradually made me very tired and work became more difficult. I have been fortunate to work throughout all of my treatments, but it was becoming more difficult. Plus the 40-50 mets showing up on the CTs were not going away with the treatment. My wife started researching again and, with the help of this site, learned about Dr. Rolle.
We are planning to go To Germany this March (2008). We pray the Doctor Rolle can help us --he sounds amazing. We will keep you posted!
On the drive home from the diagnosis I felt a lot of pity for myself -- At the time I was 27, married with a son and a child on the way. I had no idea what the next step was, but I finally had an answer for the shooting pain in my leg that had gotten progressively worse over 9 months.
The doc that diagnosed me said that the tumor's closeness to the spine would make surgery difficult. I questioned whether the 9 months I fought my insurance company to pay for a CT Scan made a difference in the disease's progression. Prior to the CT scan, neurologists explained that a tumor was 1 in 10,000. It was most likely a slipped disc or something else pinching a nerve --the CT Scan will just assure that its not cancer and give us the reason for the pain. I knew my fate prior to diagnosis as the neurologist refered me to a specialist to interpret the CT Scan. I looked up the specialist in the hospital directory --surgical oncologist it said --Doomed I thought...
I owe a lot to my wife and Mom. They've been the researchers -- I started the journey in Pittsburgh with Doctor David Bartlett. He is still one of my favorite docs. He performed my first surgery and removed a 13cm tumor from the retroperiteneam. Because the tumor twisted around nerves, he had to remove the femoral nerve The femoral nerve is what causes the quad muscle to fire --Essentially if I put weight on my left leg without locking the knee I fall. Because the doctors had never seen a person without a femoral nerve, they didn't know what to expect --I heard everything from 'you won't walk again', to 'you will walk only with a walker', to 'you should be fine, just not able to run'. After a lot of PT, I am happy to report that I walk fine and most people can't tell of my 'problem'.
After the surgery I enjoyed a period of about 3 years with no new evidence of disease --I had some spots in the lungs that didn't change, so the doctors following me were reluctant to diagnose them as cancer. In the summer of 2005 a met showed signifigant growth. I was referred to Dr. James Luketich in Pittsburgh who removed the met laproscopically.
Post surgery I consulted with doctor Robert Maki at Sloan Kettering and Doctor Jeffery Morgan at Dana Farber. Doctor Maki oversaw treatment of Nexavar. I saw disease stabilization for 5 months and then growth again. That is when Doctor Morgan suggested a new trial --ET 743. He did a little research and found that FOX CHase Cancer Center in Philadelphia was doing the same trial and was much closer to our home. I embarked on an ET 743 and Docetaxil trial oversaw by Doctor Margaret Venmehren. January of 2008 was my final treatment. It seemed to stabilize the disease and there was slight shrinkage of one spot.
The chemo gradually made me very tired and work became more difficult. I have been fortunate to work throughout all of my treatments, but it was becoming more difficult. Plus the 40-50 mets showing up on the CTs were not going away with the treatment. My wife started researching again and, with the help of this site, learned about Dr. Rolle.
We are planning to go To Germany this March (2008). We pray the Doctor Rolle can help us --he sounds amazing. We will keep you posted!
and I am so happy to hear that the procedure went so well, and that Tom has made such a rapid recovery and has already been able to return to work. It is very encouraging to know that this new less surgically traumatic treatment option appears to be very successful in removing not only the CT visible tumors, but also those which are not yet large enough to be seen on the scan. Our continued special thoughts and best wishes will be with you for a safe return trip to Germany in five weeks and another very positive experience and successful outcome to Tom's surgery on his left lung. We will look forward to your update when you return and when your time and busy schedule allow. In the meantime, please take care and enjoy a beautiful Springtime.
I have some photos for you.