People don’t always realize that clinical research trials are very interactive, and there’s a lot of individual patient care that goes on with clinical research as well. You need someone who’s willing to share with you all the details of how their body is responding to help us understand the up and downsides of what they’re going through. It’s a very personal experience.
When a patient came to Rush for a second opinion on her metastatic breast cancer, the team let her know there were many options to manage her cancer, including ones in clinical research. We asked if she would be willing to learn about some of these studies we had to offer.
She was excited about being in a clinical trial, and that enthusiasm is great for us as a team. She wanted to closely follow the protocol, listen and learn about her care.
In 2009, I was diagnosed with breast cancer in my left breast and in some of the lymph nodes on the left side. I had a successful surgery and treatment with chemotherapy followed by reconstructive surgery. They removed 12 lymph nodes, and I had radiation. Everything was going well.
As I approached the five-year mark that would have given me a clean bill of health, I started not feeling well. I had a lot of pain in my upper back, and I felt a lump under my right arm. But my dad was dying at the time, and I was at the hospital a lot. I thought it was just fatigue.
When I went to the doctor, I was diagnosed with metastatic breast cancer in my bones. It was very, very aggressive. I went to the same hospital near my home where I’d received my first round of treatment. The doctor there told me that there was nothing they could do. That it was hopeless, and I only had a short time left to live.
In the early phase of Parkinson’s disease, when symptoms are very mild, the primary research focus is to develop interventions that halt or slow the progression of disability. In the midpoint of the disease, improved treatments of the core signs of Parkinson’s disease become the focus, because tremor, slowness, stiffness and balance difficulties can be inadequately controlled by currently available medications. In the advanced stages of Parkinson’s disease, concerns focus increasingly on non-motor concerns such as cognitive problems, apathy and hallucinations.
Many patients and their families participate in research to gain access to these new treatments and to advance the scientific understanding of Parkinson’s disease for the good of all people in the world with this disease. These research studies provide not only the possibility of a new treatment, but research subjects spend more time with staff, receive education, and often meet other research subjects, thereby broadening their understanding and empowerment.
Thanksgiving has always been my favorite holiday. When I was younger, I always looked forward to all the excellent food my mother would make for Thanksgiving dinner. Since my appetite for food is not quite what it was when I was a teenager, I have come to value sharing the day at home with family and friends. However, I admit that the food still is a close second.
Over the last nine years, I have been blessed to be able to spend my working days with another family — the dedicated and caring team members of the Rush Alzheimer’s Disease Center. The RADC is passionate about finding ways to provide education, research and clinical care for memory loss. As a team, we are invited into the homes of many of our research participants and their families to conduct clinical studies on memory and aging. All of us realize the need to advance science to prevent, delay or slow down symptoms associated with conditions such as Alzheimer’s disease. However, what sustains us through the ups and downs of scientific work are the relationships we have built through the hours shared with our research participants.
So this Thanksgiving, I would like to give thanks to all the individuals and families who have carved out time to participate in studies at the RADC. You are a part of our family. You are all very special. You have given an important gift to help others now and in the future. Without each and every one of you, we would not have learned as much about how memory changes with age. We also would not have learned as much about what interventions may help in reducing the suffering associated with conditions such as Alzheimer’s disease. Continue reading →
I have a confession to make. Both Nate and I sleep in t-shirts. Although I have memories of frilly nighties that looked good, they all had scratchy seams. Nate remembers wearing guy-style pajamas with drawstrings and chest pockets. (We still wonder what he was supposed to keep in those pockets while sleeping.)
These days it’s tough to climb out of bed before dawn and leave our t-shirts behind, but no matter how difficult the day, we know their soothing comfort will be waiting at the end of it.
Today we had three medical tasks to accomplish. First was a blood draw, then an appointment with the head of our chemotherapy team, and lastly, radiation treatment #6. On paper it doesn’t sound like much, but pacing through it is like pushing a boulder uphill.
By mid-morning we were listening to our chemo doctor describe a study being conducted on pancreatic cancer patients. Nate had been “invited” to join this exclusive group of 15 participants. As the doctor described it, signing on for a new and controversial combination of chemo drugs would extend his life. He wouldn’t say by how much, but extending life sounded wonderful to both of us. Continue reading →