Leiomyosarcoma Long Term Thrivers 2019
Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email us at 2LMSDR@gmail.com
Sandy Durbin
January 2019
Sandy Durbin is an 18-year LMS Thriver. For several years before her 2001 diagnosis, she had symptoms that were identified as recurrent urinary tract infections. In fact, she had an 11 cm (diameter) tumor in her bladder, which necessitated the removal of the organ, parts of her intestine, and an anterior exenteration, followed by extensive reconstruction. Though radiation was recommended, Sandy declined further intervention.
In 2004, 11 metastatic tumors were found in both of her lungs. After several tries, Sandy found a surgeon at the Cleveland Clinic, Dr. Thomas Rice, who agreed to remove them. The tumors were resected, one lung at a time, with several months in between for recovery. After the second resection Sandy started a chemotherapy regimen of adriamycim / ifofsamide. It was difficult and left her feeling exhausted, depressed, and cloudy-headed. Nothing could control her nausea/vomiting.
Discontinuing treatment about ¾ of the way through, she switched to more natural methods, including guided imagery, to which Sandy attributes much of her subsequent recovery. The primary imagery she used was by Dr Andrew Weil, Heal Yourself With Medical Hypnosis. She worked with these imageries a couple of hours a day, as she continues to occasionally do today. She also ate/took several supplements, including but not limited to: Astragalus root, Beta Glucans, Reishi & Maitake mushrooms, and a blend of proteolytic enzymes. She has been disease free since late 2004.
Sandy believes that attitude is everything. In fact, this is the most important thing she wants to share. Other things that helped, besides the guided imagery that “helped her stay sane,” were the constant love and support from her family. This gave her a reason to live and the “ability to fight.” Some self-help books also helped her keep the right attitude. She did not find reading about statistics and her prognosis helpful.
As to what she has learned, Sandy is grateful for every experience life gives – the awful, difficult ones as well as the wonderful ones. She now knows without a doubt how very much she is loved. If she had any of this 17-year journey to do over, she would not undertake chemotherapy. She would, however, take the same nine months off work to learn about health, homeostasis, introspection, meditation and nutrition before reentering the “game of life.” She would also, as she did, read her own medical records and view them and herself as unique and separate from the disease and its devastating profile.
Sandy’s most important advice for newbies is: Believe with every cell of your body that you can overcome. People always make breakthroughs & prove statistics wrong. Believe you will be this person. Don’t let rough days define your recovery. Bawl it out, eat some comfort food, then tell yourself to suck it up & get back to being a fighter. You’ll never know how strong you are until being strong is the only choice you have.
Joni Fixel
February 2019
Unwanted Rare Cancer Leads to Terrific New Friendships
Joni Fixel from Okemos, Michigan was diagnosed with uterine LMS on July 24, 2003. Hers was a basketball sized inter-uterine tumor and was removed with clean, wide margins. Because of those margins, she and her oncologist/surgeon chose to forego chemo and radiation, and to instead adopt a “wait and watch” plan of frequent scans and monitoring.
Fortunately, Joni has had no recurrence in the last fifteen years and remains No Evidence of Disease (NED). Yet there were, of course, some tough times. What helped? Joni’s faith in God and talking to others in the LMS community. Obsessing over every pain did not help. While scary, every ache and pain is not LMS!
Joni is glad that she got involved in the LMS community, making new friends that remain 15 years later. She encourages newbies to get involved in that same community and to use self care, to do what feels right and brings peace. Simultaneously, she counsels those new to the journey to not chase after too many opinions at the risk of no treatment at all.
When asked what were the most important things she wants to share, the first is to not hesitate to ask questions or to have someone with you at appointments ask. Her second piece of advice is to enlist the help of friends; they want to share and help.
Finally, in Joni’s own words, “There is so much information available now and treatment choices that just didn’t exist when I was diagnosed. I am happy to read of many more long-term survivors now than ever before. It is my belief that there are more LMS patients than thought but due to missed or non-diagnosis, the numbers are lower than the reality.”
Alice Herman
March 2019
Thank you, Dr. David Spriggs!
Alice Herman of New York City was diagnosed with uterine leiomyosarcoma in September, 2002. The diagnosis came after a hysterectomy, which had been advised for heavy bleeding. The cause of the bleeding? A burst ulms tumor – definitely not good news.Though she did not qualify for a clinical trial taking place, two months later Alice was able to receive the same drug, Gemzar/Taxotere, outside of the official trial. Following surgery and treatment she still had a suspicious spot in the area of the original tumor. However, she did not develop any other evident tumors. Alice credits the Gem/Tax combination with containing her disease.
One year later, Alice had a second surgery to remove the remaining spot, which proved to be a second tumor. After surgery she declined radiation, informed by her own research, information from the LMS listserve, and a second opinion from MD Anderson. Following that second surgery in December 2003, Alice received CT scans and was followed by MSKCC. After ten years of NED results, her MSK oncologist released her to her primary care physician. Now, 16 years post diagnosis, Alice is grateful for every day and for the new lease on life that she feels she has been given.
How did she cope during the stressful times? Her support group of friends and family helped tremendously, as did yoga, therapy, and acupuncture for chemo symptoms. In addition, her husband was a full partner during the cancer journey, attending every infusion and doctor’s appointment. She also worked with an MD/homeopathic doctor whom she believes helped. When she had trouble sleeping, Ambien did the trick. With the shock of the initial diagnosis, Alice investigated every alternative and complementary therapy she read about, though she found most were not helpful and the search quite wearing.
If she were starting out now on the uLMS journey, knowing what she knows, Alice would go straight to Sloan Kettering for the first surgery. Had this happened, that second tumor may have been discovered and removed during the first surgery. She would again work with David Spriggs at MSK and would meet with several oncologists before deciding to work with him. And she would again accept an experimental chemo treatment instead of the then-standard chemo that did not have a high success rate.
One of the key lessons that Alice, a self-described “control freak” had to learn, is that she does not have total control over what happens in life. With that knowledge she now relaxes more and enjoys the journey, wherever it takes her. Gratitude is her constant companion
Finally, her most important advice for newbies:
Where you are treated makes a big difference. Seek out the best cancer hospital you can find within reach of your home. Take one day at a time, working with a doctor experienced with sarcoma whom you trust, while also building your own support community and learning what you can about your disease. And do NOT second-guess decisions once you have made them!
Barbara Blanchard
20 Years
April 2019
It was December, 1998 in Cape Girardeau, Missouri when Barbara Blanchard, a dedicated educator with a full and rich life, experienced swollen feet and legs, “electric shocks” in various places in her body, and an increasing tendency to lose her breath. After seeing several doctors, she was diagnosed with malignant leiomyosarcoma of the duodenum, the first section of the small intestine.
Within a month she had a Whipple surgery, a major operation most often performed to remove cancerous tumors from the head of the pancreas. Eleven days later she was back in surgery because of a bile obstruction. Barbara had neither radiation or chemotherapy post-surgery; they simply were not effective at the time. What she did search for and eventually find was the LMS online support group, a lifeline of hope and information, a place where she could feel safe.
The road Barbara has had to walk has not been an easy one. She had, and to a lesser degree still has, difficulty digesting food. Though extremely challenging at times, Barbara feels it is a small price to pay for these last 20 years. In fact, she considers herself to be a member of the prestigious club entitled “God’s Special Miracles.” She writes that as members ”We get new eyes – eyes that penetrate into the very souls of those we know. Our ears become keener – they hear those who cry out for help. Our understanding takes on a deeper philosophical meaning. “
Barbara continues with words that encourage and inspire us all: “Each day is a treasure that fills us with awe regardless of the challenges it may bring. We are here! We can handle anything!” She and her husband decided they could let fear control their lives, or they could appreciate and enjoy each day to the fullest. They chose the latter. In fact, she does not think anyone could squeeze anymore out of a day than they have done in the years post -diagnosis, creating enough memories to fill countless scrapbooks.
This is the gift Barbara has been given by leiomyosarcoma: To appreciate and enjoy each day. And to help someone along the way.
Eleanor is a nine-year LMS thriver!
Eleanor: Nine Years with Leiomyosarcoma and Still Grateful
Eleanor at 72 is a pillar of gratitude and positivity.
Leiomyosarcoma (LMS) treatments are focused on helping patients have a better quality of life, longer. However, sometimes the treatments themselves are debilitating. Eleanor is disabled after ten surgeries and chemotherapy. Yet she thrives, describing herself as a grateful survivor who is glad to be alive to enjoy her circle of supportive family and friends.
She credits the connection with other patients through the Leiomyosarcoma Support and Direct Research Foundation (LMSDR) Facebook page with her survivorship. Recalling the openness with which other LMS survivors share their fears, successes, failures, and strategies, she declares, “It has brought me into a network of our sarcoma warriors and broken down my ignorance. The group has certainly lifted me out of my isolating fear and extended my life. I am so grateful to the administration and members.”
Without a doubt, LMS often brings about sweeping life changes for those bearing the diagnosis.
Before she was diagnosed, Eleanor was the busy 62-year-old CEO of a multi-million-dollar family business who traveled extensively both for work and pleasure. She managed the twelve-acre farm that she shared with her husband of fifty years, Joe. She managed his chronic illness. In her spare time, she trained and competed in bicycle marathons and enjoyed swimming.
Today, Eleanor rests or sleeps for twelve hours a day, and faces chronic exhaustion, all of which contribute to isolation despite the loving care and attention of Joe, daughters Eleanor and Claire, and friends. Although she must conserve energy for its best uses in fighting LMS and the effects of treatment, she helps with a few light household chores around their downsized Maryland home, and shopping.
Indeed, leiomyosarcoma is a frightening and impactful diagnosis. But survival statistics are improving because of increased research thanks to the awareness efforts of the Leiomyosarcoma Support and Direct Research Foundation. Eleanor recalls that she met her diagnosis with “absolute terror and certainty that I would die in excruciating pain.”
The nature of LMS is to disappear for a while then show up with no warning. So it has happened to Eleanor. Currently, she awaits radiotherapy for nodules in her lungs. Yet, while she grieves the resurgence of the disease, as well as her lost vitality, the active life that was, and a head full of gorgeous red hair, Eleanor hails her good fortune to be a survivor.
“Life is too beautiful. I am not ready to die!” she exclaims then notes the loving accommodation of her needs by family and friends along with the unconditional love of her four cats. Adding to her zest for life and will to live, is anticipation of a beautiful flower garden Joe is having made for her enjoyment. She truly practices life one moment at a time.
There is however, something Eleanor would like people to know about leiomyosarcoma: “Although we patients generally look healthy, not wasted and skeletal like a stereotypical cancer victim, we are still very ill and require all kinds of support – mental, medical, spiritual, and physical. Help us keep laughing.”
BE VIGILANT!
Kelly Pounds, 18-year Leiomyosarcoma Survivor
Kelly Pounds is a vibrant, active, 18 year-thriver who found a rock-hard, though painless lump in her right thigh Memorial Day Weekend, 2000. Fortunately, she was scheduled to see her GP the following Monday later, Kelly saw an orthopedist who took one look at the MRI, ordered an X-ray, and then sent her the following morning to Dr. Craig Jones, an orthopedic oncologist. After a scheduled biopsy,
Kelly had a three-week wait for the results. The reason? The results were so rare that the sample was sent to three different labs for confirmation. The diagnosis? Leiomyosarcoma. A subsequent bone scan showed some inflammation of the periosteum, the covering on the bone, while a CT of her chest, abdomen, and pelvis were negative except for small cyst in the liver.
The treatment plan was for three rounds of AIM: adriamyacin/doxorubicin, ifosfamide, and mesna to be given 21 days apart, followed by resection of the distal femur and the four quads where the tumor was growing. The third round of AIM had to be postponed one week because
of low blood counts. Since Kelly’s follow-up surgery could not be scheduled for two months, her medical oncologist, Dr. Steven Mamus from MD Anderson/Orlando, decided she should have an additional round of ifosfamide/mesna to ensure the cancer did not have the opportunity to
start growing again.
Kelly’s surgery was November 7, 2000. Though doctors thought the tumor was growing on the femoral artery, in fact it was not. Thus, the original the plan to harvest a vein from her left leg, turn it upside down and use it to replace the femoral artery in her right leg and then remove all
four quadriceps and take muscles from her stomach to remake quadriceps muscles, was changed during surgery. Instead, three of the four quadricep muscles as well as the bottom six inches of the femur were removed. Kelly’s medical team shaved off the top of her tibia to insert an appliance that looked similar to a six-inch long golf tee down into it. They then drilled up into the top of the femur and inserted a rod, which connected to the rod in the tibia. Voila, a new knee! The rectus femoris, the “top” of the four quadricep muscles, remained.
During the surgery it was discovered that the original cancer had actually shrunk 98%, leaving only 2mm. No cancer was discovered in the bone, only in the muscles, and all margins were clear.
After surgery, Kelly was told 50% of people who had follow up radiation got a local recurrence, and 50% who didn’t also got recurrence. With this information in hand, she elected to not have radiation. What she did undertake was 92 two-hours of physical therapy to learn to walk again,
which she now does without a limp. Stairs are not her best friend, but she can navigate them – slowly.
Kelly has been NED since surgery in 2000. She now gets annual CT scans of her chest, abdomen, and pelvis, and bone scans. Originally the CT scans were quarterly. After two years they moved to every six months, and then annually. She has had several lumps and bumps over the years,
specifically two hand surgeries for suspected LMS. Fortunately, these turned out to be benign.
Now she rides her bike regularly fall through spring, the best time to ride in Florida. Two years ago she completed a 53 mile local bike event, just to prove she could!
Kelly would like to emphasize the importance of positive thinking. Not only did it help prevent anxiety, but it kept her focused on what she wanted and NOT what she feared. What also helped was connecting with others via the ACOR list. She learned a tremendous amount from the community, could talk openly about “the cancer,” and be assured that she was not alone, that others would understand.
As for her key learnings: “Good doctors make all the difference. My GP referred me immediately, the orthopedic doc realized it could be cancer and referred me to an orthopedic oncologist for the biopsy. And he referred me to MD Anderson where I found a sarcoma specialist who connected with MDA/Houston to discuss my case.”
As for a final reminder to all those in the trenches: The day Kelly checked in for her first chemo, she took the bed of an LMS patient who had a recurrence after 18 years. As a result, Kelly is a true believer in annual scans!
Sharon Anderson – My 17-Year uLMS Cancerversary
Sharon Anderson, MSW
From Fear to Hope
In January 2002, my life changed forever when my doctor said three simple words: “You have cancer.” Not just any cancer, but a very rare one, leiomyosarcoma, which immobilized me dead-in-my-tracks with terror.
I never went through any denial. My girlfriend had the same uLMS. She lived 2 years. She flew to MD Anderson Cancer Center in Houston and tried all the chemo available. I held hands with her family in her last days. That was only nine months before I was diagnosed.
I visualized my own demise. Those were dark days as friends tried to get me to “think positive.” Because I had a “heads-up,” I was a smart and stubborn patient. Thinking I was going to die within 24 months anyway, I refused the tumor board’s recommendations of chemo and pelvic radiation.
I felt some relief when the first lung met showed up. I had been waiting and waiting anxiously for nine months. At least we could do something that was proven to help: surgery.
That was a kick-in-the-pants to get more proactive. I studied immunotherapy. In 2003, I was able to join a telomerase immunotherapy phase I trial in Boston at Dana-Farber Cancer Institute even though I was NED (no evidence of disease). I flew from San Francisco to Boston every other week for this precious shot. A fellow LMS patient put me up. After four months, a whopping 3.5 cm tumor showed up in a chest lymph node. Back to surgery I went.
After the thoracotomy, I was NED again. I continued to learn from my online support group and the local group of LMS patients I put together. At the recommendation of one of those LMS friends, Delia Pratt, MD, I asked my oncologist to test my original tumor for estrogen and progesterone receptors. I was 99% positive for both estrogen and progesterone. After six months of fighting with my gyn onc surgeon and insurance, I had my ovaries removed in 2004. I then took an aromatase inhibitor, Arimidex, for the next seven years.
While I haven’t had a tumor since 2004, not everything was hunky-dory. The surgical menopause put me into a depression deeper than I had ever felt before. I felt like I had weights on my legs and arms. I spent months in bed thinking of death, and at times, even suicide. I had a severe clinical depression that I could not control.
The first antidepressant gave some relief, but it took several years of experimenting to find the right combination. To be honest, I’m on three different ones and never felt better in my life! Do not hesitate to work closely with a psychiatrist for depression or anxiety. The trauma of having cancer and constant fear changes your brain chemistry. The right medications actually help heal that deprivation of “happy chemicals” like serotonin, which your brain needs.
It’s been 17 years since my diagnosis. I have no idea why the leiomyosarcoma hasn’t returned. My doctors believe it was the estrogen blocker I took, but because it was adjuvant, we will never know for sure.
While I am so grateful for the time I have had, the fear has never left. From my research and witnessing others, I know LMS can return after many years of being NED. I’ve seen it return after people were 12 years from their last tumor. I get annual CT scans.
Sharon’s painting, “Constant” which expresses her fears about LMS returning
How do I cope with the fear? Volunteering with Leiomyosarcoma Support & Direct Research Foundation (LMSDR.org) gives me some feeling of control. It has been my therapy. Not only does it keep me busy, but I also have seen that I can help make a difference. That became clear in 2005 with patients participating in our LMS tissue drive. Research continued to increase with patient donations and advocacy. The foundation has grown and helped so many people.
My LMS journey has forced me to grow in many ways. I have little tolerance for petty squabbles or people who complain nonstop. I have to pay attention to my mental health and surround myself with caring people and beautiful things that give me pleasure. I have learned to be a problem-solver rather than just react emotionally to challenges. And I have learned the value of reaching out and giving to others, while passing the hope forward.
Suggested readings:
Cure Today: Cancerversary Prompts Top 10 Lessons Learned
Coping with the Trauma of Leiomyosarcoma
Leiomyosarcoma Support Groups & Resources
LMS Boot Camp Webinars for the Newly Diagnosed