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
Li-Lien, 8 year Thriver
Sharing my Journey
I often struggle on what to say or if I should say anything at all in response to the intros I read from the LMS groups.
Everybody’s cancer is different and I don’t know what would be the best course of action. I recall that my first appointment with the doctor didn’t go well, despite the fact that she was a highly recommended sarcoma expert. She did save my life by treating me aggressively. But at the first meeting, she was just like any doctor you might complain about: giving me a long list of side effects, not showing sympathy on the fact that I was the sole bread winner of a family of 7, not saying why I needed the treatment nor if that would work.
It was Dr. Dee, the old timers on this list will remember her, who propelled me beyond all fears of chemo to going through with the chemo. I shared my pathology report with Dr. Dee, and her first response was “You have very aggressive disease. It would be best to use chemo to get some control of the disease, and then use surgery to remove whatever is left after the chemo, so that you have some disease free time after the surgery.” In a few words, Dr. Dee helped me not only decide what to do next but also prepare for what was to come.
Along the way, the doctor had been supportive and encouraging and I learned from her: don’t fear chemo, fear the cancer. Try to stay fit to help chemo fight the cancer.
It has been 8 years now and I have been blessed that I was able to go through all the treatments while working the whole time. I am still not out of the woods yet, but I am grateful that an aggressive cancer seems to have been controlled without my sacrificing much quality of life.
I hope my journey might provide some comfort to the newly diagnosed. I think the medical world has learned a lot about cancer, as well as sarcoma. So work closely with your treatment team, also research as much as you can. I wish the best of luck to all of us.
2008 ULMS (12*9*8.5cm) diagnosed after abdominal hysterectomy
2009 Jan-May 7 cycles of gem/tax because CT showed lesions in lungs
2009-10: 3 wedge resections for lung lesions
2011 Aug: metastasis — 11x10mm soft tissue nodule within the subcutaneous fat of the left paramedian fat at the T10 level
2011 Sep-Nov: trial – Everolimus and Lenalidomide, horrible rashes, trial stopped, tumor removed surgically
2012 Feb: thoracotomy to remove left upper lobe and 2 wedges from lower lobe
2012 Jun-Nov: 8 cycles of gem/tax
NED till 2013 Jun scan – 2 nodules in right lung
2013 Jul: cryoablation to freeze one – didn’t work
2014 Jan and April: microwave ablations for the other mets – maybe partially worked
2014 July: stereotactic body radiation therapy for 2 nodules in right lung
Radiation associated pneumonitis since mid-December, resolved over 6 months or so
2015 on: PET every 6 months, chest CT every 3-4 months
2015 Aug: SVC blocked at tip of the port’s catheter
2015 Sep: removing port
2016 Aug: SBRT to metastatic mass between T8 and T9 (could be residual from 2011’s growth) — the radiation seems to do what it was supposed to do so just continue the 3 month scans
Ines, Juliana and Ines
Ines de Almeida, 26 Years Thriving with ULMS
by daughter Ines Jarvis
My mother, Ines de Almeida was diagnosed with LMS in 1990 after going in for a routine hysterectomy as a result of troublesome fibroids. The pathology came back as LMS. The thinking in 1990 was to simply leave her alone as they had “gotten it all.”
Fast forward 14 years to 2004.
My mother experienced chest pains. A hospital visit revealed a questionable mass in her lung and that mass led to grueling lung surgery. By then, my mother was 76 years old.
After her lung surgery, my mother had additional surgeries, radiation, chemo, and cyberknife as the disease was found in her neck, gluteal, shoulder, pancreas and more. In the early days, I had her followed by our local oncologist on Long Island as well as MSKCC but then gained confidence in our local oncologist.
At the beginning of 2015, shortly before her 87th birthday, we decided to cease all treatments. Her last treatment was a mild dose of Doxil, but it didn’t make a dent so her doctor released her from formal care. She got discharged from hospice because she was doing too well. At 87, we weren’t going after anything else as that would alter her qualify of life.
I never ever dreamed she’d make it to where she did, but my mother was incredibly tough, resilient and steadfast in her religious belief. I believe those elements helped her. All on a barely 5 ft. frame! She also lived with us and the love of her family, relationship with my daughter (her granddaughter) and crazy antics by our three small dogs made for a great deal of laughter, which we all felt made for good medicine. She also enjoyed her glass of wine.
At 88, she had other medical challenges but on August 13th 2016 we lost her to LMS. Her passing was peaceful and I couldn’t wish anything better for her.
Mary Lavin, 11 yr. Thriver in Wisconsin
Educate Yourself and Question Everything
I actually wanted an early menopause (I never get what I want,) so of course my periods began happening more often and lasting forever. Everything I read about menopause stated the opposite was supposed to happen. Then I felt the lump (lower left pelvic area.) The gynecologist was thinking fibroid, but the pelvic ultrasound reported unusual characteristics. It was surgically removed on 11/2/2006, along with all those female sex organs and some lymph nodes. It was a ULMS tumor (9.5X6.5X5.5cm, 23-25 per 10hpf mitotic rate.)
My first 3-month CT scan showed spots in both lungs. Due to the original tumor being 90% positive for progesterone receptors I was prescribed Megace (magestrol acetate,) an oral synthetic progesterone. The spots in my lungs have remained the same since. I’m considered NED (no evidence of disease.) I’ve had no radiation or chemo; just surgery and a couple of years of Megace.
Researching this cancer kept my mind busy and helped me make some good decisions. What helped me the most was my dog Truffles. No matter what the weather or my attitude, she always got me out for a walk.
My advice is to find a doctor with sarcoma experience that you can talk to. I wish I would have seen a sarcoma specialist sooner. That would have saved me some tearful appointments with my gynecologist. He wanted to treat it as a common gynecological cancer, but I was diagnosed with a sarcoma. Also, write down questions for the doctor, get copies of all your medical reports and use the internet for research and support.
November 2009, I was diagnosed with LMS. It was the fourth and final differential diagnosis after a resection of the retroperitoneum and hysterectomy. Suddenly cancer belonged to me.
A few days after surgery, my husband and I met with an outstanding sarcoma specialist. We learned that my disease was incurable and terminal. My time line was short, probably three months. We cried in each other’s arms. How would we tell our children? Who would take care of my mom in assisted living? We were crushed. What would we do?
The answer came from my best friend. She researched and explored all options. The next thing I knew, we were on a plane, on our way to get a second opinion. We went to a cancer center that was a place of hope and miracles. My doctor asked me why I came. I responded, “I want to live.” I immediately started adjuvant chemotherapy.
NED became my new best friend, but our friendship was short lived. My cancer reoccurred, metastasizing to my lungs and back to my abdomen. I’ve had six chemotherapies, two thoracotomies, two cyber knife radiations, two trials, pain management and rehabilitation.
I meditate daily and envelop myself in prayer. Time moved on and on. My loved ones, doctors and positive attitude keep me going. My pain management specialist told me that patients do better with positive attitudes. I also rescued a white coton dog. He fills my life with unconditional love. Olli makes sure I get up every morning. He has to get up and out and so do I. My husband says, “Keep going and kick the can down the road. More time means more success.” My children call my disease “Fake C”. It’s easier for them and always a laugh.
They won’t let me think of quitting. Quitting is not an option! My husband and I keep researching new protocols. I will try anything my brilliant doctors believe could benefit me. Down the road are more trials and immunotherapy, promising game changers.
I own this disease. It doesn’t own me! My goal is to change LMS from a fatal disease into a chronic disease that is treatable and manageable. I continue kicking the can down the road. I am writing this for all who share this challenging, difficult journey with me. Keep on living! Where there is life, there is hope, love and miracles.
What is your LMS story? My initial tumor was in my bladder discovered in 2001. I had symptoms for a couple years before my diagnosis, so I think I was misdiagnosed all that time with recurrent UTIs. By the time we figured out what was going on, the tumor was 11 cm diameter. My bladder was removed, parts of my intestine, & an anterior exenteration done. Then lots of reconstruction. It was recommended I do radiation therapy at that time but I declined.
In 2004, 11 metastatic tumors were found in both lungs. It took a couple tries to find a surgeon who would remove them. Dr. Thomas Rice at the Cleveland Clinic was the one that agreed to do the surgery for me. One lung at a time (with a few months recovery in between), the tumors were resected. Shortly after, I started a chemotherapy regimen of Adriamycin / ifofsamide. It was awful & made me feel like I’d be better off dead. I was exhausted, depressed, cloudy-headed, & nothing controlled my nausea/vomiting. I quit that treatment about ¾ of the way through.
I then switched to more natural methods. I think I owe much of my recovery to guided imagery. The main one I did was by Dr. Andrew Weil, Heal Yourself with Medical Hypnosis. I worked through these imageries for a couple hours a day at the time & still do them occasionally. I also ate/took several supplements, including but not limited to: astragalus root, beta glucans, reishi & maitake mushrooms, blend of proteolytic enzymes.
What is your current LMS situation? I’ve been disease free since late 2004.
If you could start all over… what would you do differently? I wouldn’t do the chemotherapy again.
What are you glad you did? I took 9 months off work to learn about health, homeostasis, introspection, meditation, & nutrition before I got back into this game of life. I read all my own medical records & viewed them as individual thing from all the horrible things I knew this disease to be.
Advise to newbies? 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.
“The Saga of the Lump”
Retroperitoneal 2002 – 15 years, no recurrence
I was part of a clinical trial, RTOG 0124 at MD Anderson. Typically, surgery is done first and then chemo and radiation. This protocol reversed the order. I had four rounds of the Red Devil (Adriamycin) and Ifosfamide and Mesna. Then I received 28 doses of radiation to give the surgeon dead tissue to cut in. Then I had surgery to remove the sarcoma and also got intraoperative radiation.
First, seek treatment from a sarcoma center. I had two good friends who did not, and they died early. There are not guarantees, but don’t handicap yourself unnecessarily.
Second, consider the outcome of RTOG 0124. Treatment in the sequence of chemo/radiation/surgery for a multimodal treatment has been successful. The standard of care is cut first. There are downsides to that.
Third, if you can step out of your life for treatment, do so. Remember that you have one job – beating the damn lump.
Fourth, use whatever anti-nausea medicine prescribed for you. Do not save it for your old age. Ginger can help and hard rock sugar candy can also.
Fifth, eat protein during chemo and radiation. Not a time for vegan diets. Eat something that had a mother and a face. Your body needs it. And do eat, even though you do not want to because it hurts. Not the time for dieting. Also, exercise. Your body is in a fight. Help it. Even ‘bad’ calories are better than none. Donuts and ice cream are OK.
Sixth, be kind to everyone, particularly your spouse and the rest of your family. You will feel like crap and the temptation is to grouse about it. Don’t. They don’t deserve it and you don’t need it.
Seventh, don’t be vain. You will lose hair and it will grow back. Refusing treatment because it is ‘not pretty’ or ‘it hurts’ is not good enough.
Eighth, step up your hygiene. Wash everywhere often. Your own gut bacteria is not your friend. Constantly wash your hands and that goes for those giving you care.
Ninth, don’t go into hiding. People do care. Let them pray for you, or think good thoughts. Be ecumenical. Ask Christians of all flavors, Muslims, Jews, Buddhists, Jains, and anyone else you know to pray for you. Good comes of it. Be social and emphasize the positive. It helps them and you.
Tenth, work on keeping a positive attitude. It is self-fulfilling, whatever attitude you take. It is a choice that you control.
Eleventh, get sleep. Your body needs it. Whatever works, let it work. Ceiling fans are good for a breeze and white noise.
Twelfth, keep busy. If you can, work at home. Don’t sit around and feel sorry for yourself. Keep a journal, particularly during chemo. The journal will tell you on subsequent rounds what to expect. As you can, do up beat things.
Thirteenth, radiation gives you a sunburn-like burn. The major immediate impact is tiredness. Keep up all that you did for chemo because your body is still fighting.
Fourteenth, when you are released, take inventory. Your body has been aged. Do not expect you will have the same stamina that you did. You will recover, but give yourself rest both of mind and body. And thank all those folks who have helped you and prayed for you. Each has loved you and you love each of them.
If you have survived leiomyosarcoma for 7 years or more – please share your story with us! Email 2LMSDR@gmail.com