We received some bad news yesterday regarding Sean's status. He had gone in on Monday for a CT scan and some blood work and the results were given to us at his Dr. appointment yesterday.
The doctors had initially been looking to tell whether or not there was any yolk-sac cancer cells left in Sean's abdomen after the surgery or if what was left inside of him was just scar tissue or teratoma. Dr. Chandramouli told us that the CT scan did not show any growth in Sean's abdomen but that his blood work confirmed that his AFP levels had gone back up...again. Dr. Chandramouli also told us that the CT scan did show some new tumors in Sean's liver. The tumors are about 1.5 cm which is a huge growth considering his last CT was taken just before his surgery, and that scan did not see any new spots. That means that in the last 5 weeks, these tumors were able to grow to a size large enough to register on a CT scan.
What this means is that Sean's cancer is officially in relapse. Dr. Chandramouli said that there were most likely already cancer cells on his liver (and possibly other parts of his body that we are unaware of) and that they had started to grow over the past several weeks. This means that Sean and I will be leaving to go to Indiana University to meet with Dr. Einhorn and get another round of treatment underway.
Sean will have to undergo a salvage regimen of chemotherapy using different drugs than what he did the first time. He will still receive the cisplatin (which is what made his hair fall out), but he will be receiving a couple of additional drugs that he did not have the first time. After the salvage chemotherapy, Sean will have a stem-cell transplant which will allow his body to regenerate his immune system after the treatment is over. This treatment requires him to be blasted with several more doses of high-intensity chemotherapy, and the stem-cells (which will be his own, so no need for a donor) will re-grow his bone marrow and help keep him alive.
Sean's appointment is scheduled for Tuesday at 2:00 pm so He and I will be flying to Indianapolis on Monday morning and we'll arrive there in the evening around 7:30. We don't know for sure when we'll be returning but we do know that we'll be out there for a couple of months most likely. Thankfully he and I have been offered a condo to stay in by a family friend that we know out there and they have also offered us the use of one of their cars. Unfortunately, for most of the time during his treatment, Sean will need to be hospitalized since he will have nearly no immune system function.
I am going to be looking for temporary employment in Indianapolis so that we can try to stay afloat during all of this.
We're not sure what this will do to Sean's fertility but we know that it definitely isn't good.
Dr. Chandramouli let us know that Sean's chance of cure is now only 30% when before it was between 80%-90%. Please keep us in your thoughts and prayers.
Sean is staying as strong as he can and so am I but of course, this is the most difficult time he and I have ever had to face in our lives. If anyone has any questions please leave them in comments on this blog and I will answer them. This is to keep Sean from having to deal with answering questions and to keep our families from the same ordeal.
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.