Tag Archives | Metastatic Colorectal Cancer
I had the pleasure of meeting Dana at the 12th annual Call-on Congress.
She became very involved in cancer advocacy efforts after losing her husband Jean to colon cancer on Mother’s Day, 2015. He was only 43-years-old. Her 7-year-old son will need to begin screening at age 25. Also, her32-year-old brother recently had precancerous cells found in a polyp that was discovered during a colonoscopy due to rectal bleeding.
Since her husband’s passing, she has been to Capital Hill twice to meet with her federal lawmakers in an effort to increase funds for cancer research. She also focuses on meeting with her state and local lawmakers throughout the year. In addition to her advocacy work with Fight CRC, she also works with The American Cancer Society’s Cancer Action Network.
Matthew Dons, originally from the U.K. and now living in Japan was diagnosed with terminal colon cancer in 2016. I was introduced to Matthew by Dr. Andrew Albert who was a previous guest on the podcast.
During our conversation Matthew talked extensively about the various treatment options that he’s explored including Proton Beam Therapy. Matthew also discussed the differences in healthcare in the U.S., U.K. and Japan.
Matthew’s story was recently highlighted in The Daily Mail. You can read it here.
Click here to contribute to Matthew’s GoFundMe campaign to help cover the cost of the Proton Beam Therapy treatment.
Like so many young Colon Cancer Survivors, Sarah DeBord was told her symptoms were “probably hemorrhoids.” Several years later she was diagnosed with Stage 3 Colon Cancer. Having recently completed her 125th round of chemotherapy, Sarah says her disease is stable.
During our conversation we discussed:
- Her work with the Colon Cancer Coalition
- The Colon Club and her experience spending a weekend with fellow survivors.
- The important role exercise plays in her physical and emotional health.
- The effect her diagnosis had on her marriage.
Links mentioned in this interview:
Sarah’s Blog – ColonCancerChick.com
Stacy was diagnosed with Stage IV colorectal cancer on her 44th birthday, September 17th, 2014 after experiencing symptoms of abdominal pain and bleeding. Stacy put off a visit to her doctor since she was a health-conscious, athletic, non-smoker who maintained a normal weight. The symptoms were merely “an annoying inconvenience.” At the time, she was balancing a full-time job with raising her 2 sons, Griffin (now 13) and Emmett (now 11). Emmett suffers with a rare chromosome disorder (one of three in the world) which renders him without the ability to walk, talk, or function for himself in any way. He has multiple special needs and demands constant supervision. He has the mental and physical capacity of a 6 month old baby. Caring for Emmett requires the attention of not only Stacy and her husband Drew, but also a nurse. To say Stacy had her hands full would be an understatement.
So, busy with her day to day role as supermom, Stacy self-diagnosed irritable bowel syndrome (IBS) or internal hemorrhoids until the pain was too much to bear. A colonoscopy revealed the most shocking and most unexpected horror imaginable: a tumor in her rectum so large that a scope could not get around it. A subsequent scan revealed cancer in her liver, 5 spots on her lungs, and 19 lymph nodes. She was given a 10% chance to survive 5 years and a treatment plan which included chemotherapy, radiation and ultimately surgery ONLY IF she responded, which was a 50/50 shot in itself. The doctors could not believe it, especially considering Stacy’s lack of risk factors, lack of family history, and age (colon cancer is typically diagnosed in people over 50).
With her usual vigor, determination, and sense of humor, Stacy took to the task of beating colorectal cancer. She was fortunate enough to have a response to chemotherapy (a protocol called FOLFOX coupled with a drug called Avastin) which qualified her as a candidate for a 5 hour colon and liver resection surgery in April, 2015. Unfortunately, a medical mistake during surgery caused Stacy severe internal bleeding where she lost half of her blood volume. She was immediately rushed back into a second, 5 hour emergency surgery and spent a week in the ICU fighting for her life. As her oncologist later remarked, “anyone else would have died.” But not Stacy.
She was declared as NED (no evidence of disease) in March, 2016. Stacy continues maintenance chemotherapy for life (43 rounds and counting…) every 3 weeks. She feels and looks great. You would never suspect what all she is dealing with. She credits her faith, family, friends, exercise, positive attitude, and integrative oncology modalities for her remarkable recovery.
“If it were just Stage IV colorectal cancer or just raising a profoundly disabled child, I could probably handle it. But managing both is completely overwhelming. I am enormously blessed to have a support system who helps me, when thee last thing I want to do is ask for help. It’s really not my style.”
Stacy offers a unique perspective. Professionally, she has spent 20 years in healthcare management on the provider and delivery sides, including roles in operations, strategy, sales and training. Personally, her battles as a patient and an advocate for not only herself but also her disabled son have fueled her recent work as a public speaker, fundraiser, and consultant. Stacy’s mission is to raise awareness of inclusion for all persons with disabilities and exemplify a “keep it real” approach to fighting and beating cancer.
Learn more about Stacy and connect with her at:
Her website: http://www.stacyhurt.net/
Her Facebook page: https://www.facebook.com/stacyhurt17
On Twitter: @Stacy_Hurt
On Instagram: stacy_hurt
Just over two years ago, when I was 28, I was diagnosed with stage 4 colon cancer. To say I knew nothing about cancer at that point in my life would be a gross understatement. In fact, finding out there was no stage 5 was a huge shock all on its own! How could I, an otherwise healthy 28 year old man who who exercised and ate well have end stage cancer? The answer to that came in the form of a simple blood draw. Along with my cancer diagnoses, I was also told I had a genetic condition called Lynch Syndrome. Lynch syndrome meant that I had some messed up genes that had no way to repair themselves. Because of this, I was a ticking time bomb just waiting to get cancer. In general, lynch syndrome takes away the fear of “I wonder if I will ever get cancer?” And replaces it with the fear of “WHEN will I get cancer?” The answer to that, for me, was apparently at the age of 28!
So there I was, young and in serious danger of dying quickly. I was rushed into emergency surgery to remove a large part of my colon along with the primary tumor. During the surgery, it was confirmed that the tumor not only broke through the colon wall, but had spread to my mesentery…an unlikely and dangerous place to spread. My prognosis was so grim, my surgeon out a letter on my door instructing nurses and visitors NOT to discuss my diagnoses with me.
After I recovered from my surgery, I went through six months of aggressive chemo. At the end of those six months my mesenteric tumor shrank enough to make me a candidate for something called a NanoKnife procedure. NanoKnife was explained to me as a fairly new procedure used only when tumor’s are in highly sensitive and dangerous areas. Rods would be inserted into my tumor and electromagnetic waves would be pumped through the rods. This would cause microscopic holes in the tumor’s cell, causing them to leak out all their contents, thus killing the tumor and giving me approximately 2 years of being cancer free. I understood this was not a cure, it was merely a way of treading water until another plan could be formed. I signed off on NanoKnife and my unconventional fight with cancer truly started.
The NanoKnife procedure quickly turned complicated. Once inside of me, my surgeon realized the tumor attached itself t my small intestine and gallbladder. What was supposed to be a frying of the tumor, quickly turned into something much more. I underwent a gallbladder removal, a small intestine and mesenteric resection, a stomach bypass, and an intestinal rerouting. I was told everything went beautifully and I should be cancer free. I was sent home to recovery in peace after about a week in the hospital.
Now, anyone who knows me well, knows that when I do something, I go all out. So, not only did a NOT recover peacefully, instead I started to bleed internally. An ambulance had to be called to my home in a horrible blizzard where they found me, pale, weak, and with barely a pulse. I was rushed to a local hospital where I received 8 blood transfusions in an effort to stabilize me. This resulted in a week long stay in ICU where I suffered from seizures due to a lack of blood. At this point, I was more than sure I would never leave the hospital alive.
Somehow, I made it out. I was supposed to start maintenance chemo once I was strong enough…but my quick brush with death made me reconsider everything I was being edged to know more about what was happening to me. I was so tired of not knowing anything about my cancer other than what my oncologist was briefly telling me. So I read. I read a lot. It is so important for those of us with cancer to not be afraid of information. The more we know, the more we can have an informed discussion with our team of doctors. I truly believe that the more we know about our cancer, the more doors open for us.
Self advocacy will get you far in the cancer world, through my research, I found that the maintenance chemo my oncologist wanted me on was not beneficial to those of us with lynch syndrome. In fact, the drug had been noted as detrimental in some cases. Shouldn’t my oncologist have known this? Probably. But she was my ONE oncologist…I was one of possible HUNDREDS of patients to her. How could I expect her to know all the nuances of colon cancer when she treats every cancer, every day? I knew at that moment I needed an oncologist who not only specialized in colon cancer, but lynch syndrome as well. I was o angry that my oncologist didn’t have the knowledge I thought she should have…but now I realized she was doing her best and I couldn’t rely on ANY doctor to have ALL the answers. Doctors are wonderful people, but I had to remember that they are still human. Humans with immense pressure placed on them on a day to day basis. It was then that I made the decision to learn as much as I could about lynch syndrome and MY colon cancer. I wanted to bring more to the table during appointments, I wanted to ask questions and learn, I wanted to save my own life.
My research led me to the university of Colorado, where my current oncologist, Dr. Wells Messersmith works. I met him after my NanoKnife procedure and filled him in on what was happening with me. At this point, two months after NanoKnife, I was assumed cancer free. Unfortunately, one morning, I woke up to a familiar and excruciating pain where the tumor was. A quick CT scan confirmed what I already knew: NanoKnife, my unconventional answer to the cancer trying to kill me…the procedure that was being hailed as an incredible weapon against cancer…the surgery that almost took my life…was a total and utter failure. That tumor was pissed and growing.
Little did I know that this was possibly the biggest blessing I could have asked for. Because the tumor was alive, well, and measurable, Dr. Messersmith suggest I quickly enter a phase one clinical trial with something called “immunotherapy.” A very quick google search unearthed a massive amount of articles calling immunotherapy the biggest medical breakthrough since antibiotics. I wanted in.
Once I started the immunotherapy trial, I knew something strange and good was happening inside my body. The drug, Atezolizumab, was incredibly easy to tolerate and within weeks…WEEKS…I felt well. My pain and fatigue were replaced with strength and hope. I went from a tiny 110 pounds to 130 pounds in roughly a month and a half. Whatever was happening on my inside was manifesting itself on the outside. The drug removed the blinders on my immune system that cancer had placed on it and my cancer was the number one target. And now, a year later, here I stand: healthy, alive, active, and well. My tumor is still shrinking and I live my life with cancer as an after thought.
Had I not done my own research…had I not had the courage to seek out another oncologist…I would most certainly not be alive today. So I encourage all of those with cancer to truly take the reigns and be your own life saver. Don’t wait until it’s too late to start looking at trials…please….look NOW. Save the trial number, print off the trial description, and take that information to your oncologist. Do not wait for the to present something to you….they are so busy that things fall through the cracks all the time. During these last two years I have noticed that those who do the best and live the longest tend to be those who are well informed and active in their treatment planning.
I often tell newly diagnosed patients that they are the coach of their cancer care team. Your oncologist is the quarterback, but it is up to YOU to run the team. So you have to step up and play your own role in order to win this game. You will hear a lot of “no’s” as you present information to your team…but for every 20 “no’s” there will be at least one “yes.” And sometimes, all you need is that ONE YES.
Dr. Jeffrey Meyerhardt is the Clinical Director of the Gastrointestinal Cancer Center and Senior Physician at Dana-Farber Cancer Institute. In his research, Dr. Meyerhardt, who also is an Associate Professor of Medicine at Harvard Medical School and co-leader of the Center for Colon and Rectal Cancer at Dana-Farber/Brigham and Women’s Cancer Center, focuses primarily on the influence of diet and lifestyle on outcomes among patients with colorectal cancer (CRC). Dr. Meyerhardt is principal investigator of a national clinical trial testing celecoxib as adjunctive therapy to standard treatment for stage III CRC, and recently became co-chair of the GI Committee for the NCI cooperative group Alliance. He earned his MD from Yale School of Medicine, then completed a residency in internal medicine at Beth Israel Deaconess Medical Center and a medical oncology fellowship at Dana-Farber. He joined the Gastrointestinal Cancer Center at Dana-Farber in 2002 and the faculty at Harvard Medical School in 2002.
Manouchka Joseph is the highly motivated new Medical Director for Palliative Medicine at Banner Desert Medical Center in Mesa, Arizona. She came to Banner in 2014, and under her leadership, the Desert Palliative Medicine Department is growing. She is also a Clinical Assistant Professor for University of Arizona, where she facilitates education for Nurse Practitioners and Fellows interested in Palliative Medicine. She graduated from Faculté de Médecine et de Pharmacie Université D’état in Port-au-Prince, Haïti. She completed her residency in Internal Medicine at Flushing Hospital Medical Center in Flushing, New York and her fellowship in Hospice and palliative medicine at North-Shore LIJ Health System in Manhasset, New York. She has been in Palliative Medicine since 2011.
Palliative Medicine is a medical sub-specialty that focuses on the care for medically complex individuals who have high care needs and often spend considerable time in the hospital. Dr. Joseph was drawn towards Palliative Care in her second year of residency when she found that the critical care doctors, because of the speed of the work, did not have enough time to spend time with the patients and their families, particularly those chronically ill patients suffering from multiple comorbidities. Her desire is to help families in that crucial point in managing their health care by addressing their emotional, social, and medical needs.
Eight years ago, at the age of 35, Kim Newcomber was diagnosed with Stage IV colorectal cancer with metastasis to her lungs. She has been N.E.D. (No Evidence of Disease) for 4 years. She stopped by to chat with me at the 2016 Live Your Best Life mCRC Symposium.