Sorry for the roller coaster ride everybody but I have another update. Apparently my surgeon jumped the gun and things aren't as bad as he made them seem. He came in the room and basically told me that there was cancer he could not get to during the surgery and that I still have it. He said I will need more chemotherapy, possibly radiation, and further surgery. As you read in previous posts I was talking about going to Indiana to try and deal with this because of their reputation for treating testicular cancer.
Well, yesterday I had an appointment with Dr. Chandramouli and he said that Dr. Childs (my surgeon) spoke too soon. He ran further analysis and looked at the pathology results of the tissue they took from my abdomen. That last little area that Dr. Childs couldn't get to actually shows no evidence at all of any yolk-sac cancer being present. There is no reason to think that I have cancer right now so... yay :)
What is left is most likely either scar tissue or teratoma. Teratoma is kind of complex but basically it's a local tumor growth that can grow within itself but is not a danger to survival. If it grows too much it can cause discomfort just from its size. If I do have teratoma and it is growing I may need another surgery somewhere down the road. Here's a link for more info on teratomas:
The definition of teratoma given is pretty broad and probably will not help you understand what I'm talking about that well. There are bad types of teratomas that it talks about but the kind I might have is not dangerous.
The plan now is to contine to monitor my blood markers and do routine CT scans to make sure that the cancer stays away. Hopefully it does because the next step is salvage chemotherapy and stem cell transplants (ugh....). I have THE authority on testicular cancer aware of my case and giving advice on it though so I feel confident that I'm getting the best there is. Dr. Einhorn in Indiana is in direct contact with Dr. Chandramouli and is ready to see me should anything else happen. This is the guy that Lance Armstrong went to. He is the only reason I have a chance to beat this in the first place. Here are some links about him, pretty impressive:
I'm feeling almost tip top again and things are well. Thank you for all the prayers, thoughts, and help you have given me. It was great to see so many of you at the wedding. You helped to make the day truly special for Karen and I. If you have any questions e-mail me at firstname.lastname@example.org.
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.