I was diagnosed in 2013 with an aggressive uterine cancer. Contacted Dana from Lazarex to find out if she knew of any clinical trials and ask her to find out what she could about my cancer. She was awesome and timely getting back to me. I didn't need any further services from Lazarex as I was completely covered by my insurance fortunately. But I tell everyone I can about this wonderful organization. I am an oncology nurse and am cancer free going on 3 years!
Approximately 2 1/2 years ago, I was diagnosed with a rare and aggressive Stage IV cancer. After two recurrences using chemotherapy and radiation treatments, I went to MD Anderson in the hopes of enrolling in an immunotherapy clinical trial. (I was unable to get into any trials at local hospitals.) I wasn't sure how I was going to afford the expense of traveling back and forth between Michigan and Texas every two weeks, but then I was referred to Lazarex. They specifically help patients who need to travel for clinical trials. Lazarex's assistance not only helped alleviate some of the financial burden, but also lessened the stress I was feeling. They have been so kind and easy to work with. I am very grateful that I have been given an opportunity to extend my life by being able to travel out of state to other hospitals that can help me.
Two years ago, on the day before my 69th birthday, my Arizona surgeon told me the results of my annual CT scans. My liposarcoma had recurred, and was inoperable and metastatic. I had shared my body with this very rare tumor since the original diagnosis in 2001.
The Arizona surgeon told me that the then current standard treatment involved a chemotherapy that was effective only 20-30% of the time. When I asked for a prognosis if the chemo failed, he told me, "Two years."
My husband and I went to M. D. Anderson in Houston to find out about potential clinical trials. I was quickly enrolled in a Phase I targeted therapy trial that required traveling between Phoenix and Houston every three weeks. The costs of air fare and hotel reservations were overwhelming. Fortunately, my husband discovered the Lazarex Foundation.
I applied for and was accepted into the program. Without Lazarex, I wouldn't have been able to participate in this life-saving trial.
Initially, the tumor shrank, but it began to grow after 13 months. I was transferred to an immunotherapy therapy trial in July, 2015. So far, it has kept the disease stable. And, Lazarex continues to assist me with costs.
Here I am, 30 months after I was given a two-year prognosis, alive, doing well, and feeling great. I live a normal life, except for trips to Houston.
Thank you, Lazarex for giving me two years (and counting) of happiness, fun, family and love. You are truly a blessing!
Having to make a journey from Chicago to Houston every two weeks is a great financial burden. Lazarex was mentioned to me, by chance, on a shuttle journey between the hotel and M.D. Anderson for treatment for my metastatic Stage IV colon cancer.
After finding Lazarex online, we found the application process to be simple and straightforward, and all questions were answered with respect and very clearly.
Today we received our first reimbursement which will be used wisely to pay some of our travel expenses.
We are very grateful for this and will now be able to breathe a little easier and can continue with my treatment schedule with a sense of peace of mind.
The past 5 years of cancer for my husband have been difficult. The past 2.5 years he has traveled 240 miles round trip every other week for treatment in a drug trial. Lazarex has been the one bright spot.
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.
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.
I have worked extensively with Tami K. @ the Lazarex Cancer Foundation. With my "chemo brain" always lurking around, she provides me with the utmost tender care via the phone. I'd like to recognize Tami for her outstanding work with cancer patients and the services Lazarex provides us.
For a few weeks Christy's family was traumatized with the news of her advanced cancer. Lazarex turned a bleak future to bright hope when they supplied the means to get her the experimental treatments at Mayo in Minnesota. I still can hardly believe what has happened, that Christy has been cancer free since!!!
Thank you, Lazarex! Your name fits you so well!
Lazarex is the reason I can write this review today. I was given two years to live and my work was suffering from my mental state. I have to provide for my wife and son and keep my one man company going. My local Oncologist in Honolulu had nothing to offer. I was referred to a clinical trials in Santa Monica California but the travel was too expensive. With the help of Lazarex I was able to attend the trials, received wonderful treatment that has stopped all growth and shrunk one of my tumors and allowed me to keep working. Thank you Lazarex for helping me stay alive. Michael Honolulu Hawaii
Lazarex Foundation has been such a tremendous help with my wife's battle against her breast cancer. She was diagnosed with an aggressive form of cancer and thanks to the financial assistance we have received from Lazarex, she has been able to be part of a clinical trial at Mayo Clinic developing a vaccine for her type of cancer. The travel expenses would have prohibited her from participating otherwise. I will be eternally indebted to Lazarex for giving us the gift of life.
The Lazarex Foundation was also instrumental in helping a close friend of ours receive treatment that required extensive travel. Their funds afforded that family the ability to receive treatment that was not available in our area.
THANK YOU can never be said loud enough or enough times for all that you do!