Alright, I'm scheduled to be back in NY on March 29th for repeat scans and a meeting with Dr. Feldman that morning. Then I have the follow up appointment a couple days later on April 1st where I will hopefully get all set up with my ARQ pills and fly home. Now we just have to figure out the flight/hotel situation again.
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Okay, so here is how it all started and where we are at now (short version):
Throughout 2007, I had lower back pain. The back pain got worse and worse. Finally, a doctor ordered bloodwork, which showed that I was anemic. A CT scan was ordered that showed widespread cancer that had originated in my right testicle. There were small metastases in the lungs and large tumors in the abdomen.
In January of 2008 I had a right orchiechtomy surgery done (right testicle removal). A biopsy was done that showed a nonseminoma/seminoma mixture. I was diagnosed as stage 3 high risk. I went on a BEP regimen (Bleomycin,Etoposide, and Cisplatin) of chemotherapy that lasted 12 weeks. All this was done at home in Salt Lake City under the direction of Dr. Nitin Chandramouli. After it was done, a CT scan showed that all cancer was inactive except for the largest tumor in my abdomen. Circa June '08.
In August of 2008 I underwent an RPLND (Retroperitoneal Lymph Node Dissection) in SLC. The surgery appeared successful but a subsequent CT scan showed the cancer had spread to my liver in a couple spots. In September of '08 I was taken to Indiana where Dr. Einhorn (inventor of platinum based chemo and recognized testicular cancer specialist) practices. Under his direction, I received three weeks of salvage chemotherapy. After the salvage, I underwent two rounds of high dose chemotherapy (5x strength Carboplatin and Etoposide). Before undergoing treatment, my stem cells were harvested so that they could be given to my severely weakened body after treatment. I achieved a complete remission in December of '08
As part of maintenance, I took a VP-16 etoposide pill until April of 2009. I remained in remission until July when my blood markers began elevating again. A PET scan revealed a localized tumor in my abdominal cavity, near the vena cava. I was taken to Indiana again, where Dr. Beck performed a second RPLND. The surgery was difficult but successful. At the cost of half a kidney, a bowel obstruction, a possible blood clot, and several weeks in the hospital I was in remission again.
In October of 2009 I relapsed again. I began a regimen containing Taxol and Gemcitabine. At the time there were small metastases in my liver, lungs, and abdomen. Taxol/Gemzar failed in early 2010
In late January of 2010, after having several months of normal blood tests, the AFP marker began to rise again. Tumors in my abdomen, lungs, and liver began appearing again.
In March 2010, I went to Sloan Kettering Memorial Cancer Hospital in New York and began a clinical trial under the guidance of Dr. Darren Feldman. The ARQ-197 pill looked like a good side-effect free choice to try and fight the cancer.
In April 2010, the trial was determined not to be effective for me. New tumors appeared and disease progression showed no signs of slowing. A tumor on my spine threatening paralysis was of particular danger. Fearing that consequence, I underwent a short course of radiation on that tumor and another in my hip.
I have multiple lesions in my lungs, liver, and other areas that continue to grow. Currently, I am in the process of having my tumor profiled on a molecular level by TGen. TGen is a company that is based out of Arizona. They look at tumor's case by case, on a genetic level, to determine new and unused courses of treatment that will be as effective as possible for that individual.
Because that process takes a while, and the treatment itself may not be covered by insurance, I just started a regimen of Oxaliplatin as well. Oxali is effecive in 20% of people in my situation. The regimen often comes with a lot of neuropathy and cold sensitivity. I started this regimen on 5/12/10 and am still waiting to here about how it's working.
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Okay, so here is how it all started and where we are at now (short version):
Throughout 2007, I had lower back pain. The back pain got worse and worse. Finally, a doctor ordered bloodwork, which showed that I was anemic. A CT scan was ordered that showed widespread cancer that had originated in my right testicle. There were small metastases in the lungs and large tumors in the abdomen.
In January of 2008 I had a right orchiechtomy surgery done (right testicle removal). A biopsy was done that showed a nonseminoma/seminoma mixture. I was diagnosed as stage 3 high risk. I went on a BEP regimen (Bleomycin,Etoposide, and Cisplatin) of chemotherapy that lasted 12 weeks. All this was done at home in Salt Lake City under the direction of Dr. Nitin Chandramouli. After it was done, a CT scan showed that all cancer was inactive except for the largest tumor in my abdomen. Circa June '08.
In August of 2008 I underwent an RPLND (Retroperitoneal Lymph Node Dissection) in SLC. The surgery appeared successful but a subsequent CT scan showed the cancer had spread to my liver in a couple spots. In September of '08 I was taken to Indiana where Dr. Einhorn (inventor of platinum based chemo and recognized testicular cancer specialist) practices. Under his direction, I received three weeks of salvage chemotherapy. After the salvage, I underwent two rounds of high dose chemotherapy (5x strength Carboplatin and Etoposide). Before undergoing treatment, my stem cells were harvested so that they could be given to my severely weakened body after treatment. I achieved a complete remission in December of '08
As part of maintenance, I took a VP-16 etoposide pill until April of 2009. I remained in remission until July when my blood markers began elevating again. A PET scan revealed a localized tumor in my abdominal cavity, near the vena cava. I was taken to Indiana again, where Dr. Beck performed a second RPLND. The surgery was difficult but successful. At the cost of half a kidney, a bowel obstruction, a possible blood clot, and several weeks in the hospital I was in remission again.
In October of 2009 I relapsed again. I began a regimen containing Taxol and Gemcitabine. At the time there were small metastases in my liver, lungs, and abdomen. Taxol/Gemzar failed in early 2010
In late January of 2010, after having several months of normal blood tests, the AFP marker began to rise again. Tumors in my abdomen, lungs, and liver began appearing again.
In March 2010, I went to Sloan Kettering Memorial Cancer Hospital in New York and began a clinical trial under the guidance of Dr. Darren Feldman. The ARQ-197 pill looked like a good side-effect free choice to try and fight the cancer.
In April 2010, the trial was determined not to be effective for me. New tumors appeared and disease progression showed no signs of slowing. A tumor on my spine threatening paralysis was of particular danger. Fearing that consequence, I underwent a short course of radiation on that tumor and another in my hip.
I have multiple lesions in my lungs, liver, and other areas that continue to grow. Currently, I am in the process of having my tumor profiled on a molecular level by TGen. TGen is a company that is based out of Arizona. They look at tumor's case by case, on a genetic level, to determine new and unused courses of treatment that will be as effective as possible for that individual.
Because that process takes a while, and the treatment itself may not be covered by insurance, I just started a regimen of Oxaliplatin as well. Oxali is effecive in 20% of people in my situation. The regimen often comes with a lot of neuropathy and cold sensitivity. I started this regimen on 5/12/10 and am still waiting to here about how it's working.
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1 comment:
HeySean, it's Will Githens. We met today in Dr. Feldman's office. Just wishing you well and hoping you start the ARQ trial this week.
wgithens@gmail.com
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