Sean Martella's Testicular Cancer Update Blog: Two Weeks In...

Sunday, April 11, 2010

Two Weeks In...

Well, I'm almost two weeks into the study now and am getting ready to head back to NY on Wednesday. I'll only be staying for one night. While I'm there, I'll get a CT scan, blood work, and maybe some other tests done to see how well the trial is working. An extremely generous person in the West Village of Manhatten is going to let me stay at their apartment for the night, so I won't be at a crazy hostel again.

So far I have only had one side effect, but I don't know if it's related to the ARQ or not. The day after I got home from NY last time I started getting this pain in my hip joint, butt, and upper thigh area. Over the last little bit it has gradually gotten worse and worse to the point that it can be excruciatingly painful and keep me up at night. The pain seems to radiate from my femur and all the way down my shin now. It's a lot worse on the right side than it is on the left. Neither myself or Dr. Feldman's office really understand why I'm having this pain but I plan on getting an X-ray on Thursday as well. The only diagnosable thing that I can compare it to is sciatica, but I don't know if that's what it is. No patients have previously reported it as a side effect of ARQ. I had a CT of my pelvis area done on my last time in New York. There weren't any tumors or anything else that could seemingly cause this pain either. It's a little baffling but hopefully it sorts itself out.

4 comments:

Aegletes said...: Best wishes for your visit this week and I hope you get to the bottom of the sciatica-like pain.
Alex (Aegletes on TC-Cancer); April 12, 2010 at 6:32 AM
terry said...: hang in there. I'll be praying for you on Wednesday. I'm sure the dr's will find out what's going on with that pain you have.; April 12, 2010 at 12:07 PM
Anonymous said...: keep on givin'er, buddy. Your courage is amazing.; April 13, 2010 at 9:00 PM
Nick Smart said...: Hope the appointment is going well today, Sean.

Nick (Smartie at tc-cancer); April 14, 2010 at 11:52 AM

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The Rundown

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.

Sean Martella's Testicular Cancer Update Blog

Sunday, April 11, 2010

Two Weeks In...

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