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Mike123

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Review for Lazarex Cancer Foundation, Danville, CA, USA

Rating: 5 stars  

How Lazarex Cancer Foundation Helped Us
By Mike & Sarah Snyder

My cancer journey began with a sore left knee in the mid-90s while living in Denver. After a variety of tests and minor surgery to correct the problem, I was diagnosed with a specific type of bone cancer called chondrosarcoma. My doctor told me it had come from the bone disease that had me in and out of Shriner’s Hospital as a kid. The treatment for the bone cancer would be a knee joint replacement for my left leg.

The surgery was done in August 1996. It seemed to work and I enjoyed four pain-free years with no worry about the bone cancer returning. Then in early 2000, my doctor determined that my artificial knee was coming loose, not an uncommon occurrence, and she would need to do a resection, which involved removing the old artificial knee components and replacing them with new ones. The operation was successful and once more, we thought we were done with bone cancer.

After a series of job-related moves, we ended up in Albuquerque, New Mexico in late 2004. We had been long-time visitors to the state over the years and were thrilled to finally call it home. In early 2005, I returned to the doctor, concerned about a persistent tenderness and swelling in my left ankle. The news wasn’t good. The swelling was from another cancer tumor. This time, the surgery would be the amputation of my left leg below the knee.

The amputation below the knee eventually became the amputation above the knee as several infections made keeping the remaining part of my artificial knee a painful waste of time. The battle wasn’t over and I endured several more tumor removals from what remained of my left leg. Things got worse when additional tumors showed up in my right elbow and my lungs.

Every time my doctor removed one malignant tumor, it agitated the benign tumors nearby and they started growing. In the spring of 2011, my doctor said there wasn’t anything else he could do. He recommended I switch to hospice-type care, because the tumors were growing too fast for him to successfully remove them surgically. He told me I needed to accept the fact that bone cancer would likely take my life. He estimated I had about 5 years to live. It was an answer I couldn’t accept and a path I wouldn’t take.

The search for treatment options was made more difficult because my cancer is so rare. There are about 1.6 million new cases of cancer diagnosed each year resulting in more than 580,000 deaths; approximately 1600 each day. Out of those 1.6 million cancer cases, roughly 2000 will be bone cancer and of those, only 250 will be Chondrosarcoma-my type of bone cancer; amounting to a little more than one-one hundredth of one percent of all new cancer cases each year.
Despite the long odds, we dove in and began searching for alternative treatment options. After four months of research, I found myself at the MD Anderson Cancer Center in Houston, enrolling in a clinical trial for a drug called IPI-926 for my chondrosarcoma.

There was one catch to being a clinical trial patient that we hadn’t really counted on. The initial phase of the trail would require me traveling to Houston every two weeks for blood work and exams. Every other visit would require overnight stays for CT & MRI exams. Under the FDA guidelines for the clinical trial, ALL of the work had to be done at MD Anderson to ensure the study’s integrity.
Quite simply, if I couldn’t travel to Houston, I couldn’t participate in the trial. The initial rounds of travel nearly wiped us out; requiring a 2nd mortgage on our house and causing us to go through our savings and an inheritance my wife Sarah had received from her Mom. Friends held some fundraisers for us, but that only covered a month or so.

If we couldn’t find some help paying for the travel, I would have to withdraw from the clinical trial. Since surgery was no longer an option for me, giving up the trial would mean giving up period. We couldn’t move to Houston and no other options existed anywhere close to home. There didn’t seem to be any choice left except walk away from treatment that was literally saving my life.
Then a friend referred me to the Lazarex Cancer Foundation. Lazarex’s mission was unlike any other cancer-related organization I knew about. Rather than raising money for research, Lazarex dedicated itself to helping people on clinical trials travel to the treatment they needed; people just like me.

I nervously went through the application process; filling out the paperwork and connecting my clinical nurse at MD Anderson with the Lazarex staff to get specific questions answered about my treatment. And I anxiously waited to hear back from them.

About a week later, my cell phone rang. Lazarex had approved my application for assistance. They would cover my travel expenses so I could continue my treatment. I couldn’t completely believe it. They were going to help me. I could still go for my clinical trial. I didn’t have to surrender to cancer after all.
As soon as I got off the phone with Lazarex, I called my wife, Sarah, and shared the news. We were both fighting back tears of relief. My treatments could continue and it wouldn't ruin us financially because the travel would be covered.

And it would continue to be covered, regardless of where I was being treated. When I had exhausted all treatment options at MD Anderson, we were able to look for other clinical trials. We began focusing on ones with promising outcomes that the big cancer treatment centers were ignoring. But we needed the trial to focus on my specific type of cancer. With the help of the folks at Lazarex and a local oncologist in Albuquerque, we found just such a trial.

The drug being tested focused on a gene mutation called IDH-1, which can cause regular cells to mutate into cancer cells. The drug was supposed to stop the gene mutation from happening and based on that, would also prevent the healthy cell from changing into a cancer cell.

The drug is called AG-120 and its method of seeking out specific cells is a brand new treatment approach called targeted therapy; meaning the drug only attacks cancer cells, not healthy tissue. This method is being used across several different types of treatment for a variety of cancers. So far, the results are very promising.

For me personally, AG-120 has slowed down the growth of my tumors to a point where my doctors tell me my tumors are stable. They're not shrinking, but they're not growing either. It's no small step to go from a terminal diagnosis to one that says my tumors are stable, but I've been able to make that step, thanks to the help of research from clinical trials and the travel help from Lazarex enabling me to get to those trials.

There are now options for different approaches and types of care that can take away cancer, but not your dignity. These options include clinical trials for new drugs and treatments; options that mean hope and a chance for a future that didn't exist before.

Because of those options and the hope they offer, Sarah and I must thank Lazarex Cancer Foundation for helping me and so many others get to those clinical trials for new treatments. The help they offer isn't just saving my life and the lives of others. It's giving our lives back so we can live. Because cancer doesn’t get to win; not now, not ever. Thank you, Lazarex Cancer Foundation for making that possible.

Role:  Client Served
 

Review for Lazarex Cancer Foundation, Danville, CA, USA

Rating: 5 stars  

I have a rare bone cancer called Chondrosarcoma. Three years ago, it progressed to the point of being inoperable and was spreading. My doctor at the time said I had five years or so to live. Thanks to Lazarex, I've been able to participate in several clinical trials of new drugs designed for my type of cancer. The medicines have extended my life expectancy a lot and the latest trial drug I'm taking has the potential to completely stop my cance from spreading.

The trials I've been enrolled in have all been out of town and required regular travel from my home in Albuquerque to hospitals in Houston and San Antonio. Without Lazarex's help, I would have had to stop the treatments because the cost of travel was bankrupting us. Stopping treatment would also mean losing my life to cancer, since there were no other treatment options.

But thanks to Lazarex, I can continue participating in clinical trails that are literally saving my life. We have hope and the chance for a future that includes living a long life. Thanks to Lazarex, my cancer doesn't get to win, I do.

Role:  Client Served