The precise causes for Leiomyosarcoma, or LMS, are currently unknown. What they do know does not, necessarily, point to any specific cause. However, the most common factors seem to be age (with most people developing LMS . . . . being over the age of 50), exposure to radiotherapy (many people previously treated for other forms of cancer with radiotherapy may develop soft tissue cancer — a year before my father’s tumor started he had radiation), chemical exposure (especially vinyl chloride, dioxins, and a wide range of herbicides, and genetics.
Diet is extremely important!!
First thing being first: When you have cancer its always important to know your vitamin and mineral levels; Angiogenesis is the formation of new blood vessels.
Tumors need a lot of new blood vessels to supply blood to its rapid growth.
Copper is needed in order to grow these new blood vessels (Blood Test are Important.)
Copper Depletion Antiangiogenesis is based upon the assumption that there is a window in which the copper concentration in the body is high enough to carry out the necessary business of the body, but too low to enable tumor angiogenesis.
Ammonium tetrathiomolybdate is a copper chelating agent. . . .used to lower body copper stores. It is an FDA approved orphan drug to be used in Wilson’s Disease, a copper storage disease. If Ammonium tetrathiomolybdate cannot be obtained, however, then zinc salts can be used. Either way, a doctor’s supervision is necessary.
However, if you are on a copper chelating medication….while attempting to attain target copper levels. Green leafy vegetables, nuts, seeds, whole grains and shellfish tend to be high in copper. Vegetable copper levels reflect the ground they grow in. Dairy and also rice are relatively copper free. SO HAVE YOUR COPPER LEVEL CHECKED.
High Iron contents increase the Likelihood your cancer will be aggressive and Doctors always made a big deal. . . . about my fathers selenium de·fi·cien·cy, however, wouldn’t do anything to correct but to tell him it was low. While its also important to know that vitamin D helps to prevent cancer.
IMPORTANT REMINDER: to eat clean before during and after chemotherapy because the treatment doesn’t distinguish the difference between cancer cells and food additives it will only go after anything foreign to the body. ALSO. . .after chemo has been administered it’s critical to detox your system gradually so the toxins don’t build up in vital organs!!!!
by Patricia Moreira-Cali (Author) Dr. Patricia Moreira-Cali, MNT was registered dietitian nutritional professional specialist in Gainesville, Florida. She graduated from her medical school with her medical degree in 1987 and had over 31 years of experience in the field of medicine.
On April 23, 2013, Patricia’s Cali world turned upside down when she was diagnosed with Leiomyosarcoma (LMS), an extremely rare cancer affecting only 1 in 5 million people. LMS is also a very aggressive type of tumor, thus nicknamed the Purple Dragon. After the initial shock of the diagnosis subsided, Patricia was ready to discover ways to heal herself and find Hope & Faith. She went from being a counselor to thousands of patients on how to be proactive and take charge of their own health, to taking unknown paths in search of hope for surviving a disease that does not have a single established medical treatment.
Life on A Planet Without Patricia Moreira Cali, 1962-2017
Patricia Moreira lived for 55 years old 2/15/1962 – 6/12/2017 She embarked on a spiritual journey, which took her to Omega Institute, Bali and Brazil, where she met healers, a guru, a physician and other extraordinary people who became instrumental in her finding peace within and starting to believe that everything can be healed, even the Purple Dragon. Born in Brazil, Patricia moved to the United States at age 20. She also has a Master of Nutrition Science from the University of California, Davis, and has worked as a university professor, researcher, speaker, clinical dietitian and diabetes educator.
She was the proud mother of three children (including an angel in heaven) and the founder of Helping Children Heal (HCH), an NGO that provides medical treatment for impoverished and sick children who don’t have health care. She also traveled the world, having backpacked solo in Tibet, Nepal, Vietnam, Cambodia, Laos, Namibia, India and many other countries. Above all she is a proactive woman who has been inspiring many as she travels the paths of healing and discoveries, keeping alive the flame of faith that even the Purple Dragon can be tamed.
For my Good Friend:
Tom Enright and his wife Alice they pay Leiomyosarcoma no mind. With Mind Body & Spirit as their guide: Tom and Alice’s views about cancer is out of sight …..out of mind and this is the protocol we adhere to. Our protocol: check scans every 3 months to start with then move it back to 4 months and now Susan George at Dana Farber has moved it to 4-6 months and whatever we deem necessary (we are going to stay at the 4ish month plan.)
Tom has learned Regular scans are the best awareness one can get for Leiomyosarcoma at well known Sarcoma Centers like Dana Farber, Sloan Kettering or M.D. Anderson. Alice has been clean now for 2 1/2 years of high grade uterine LMS.
Since her Vat Surgery: the plan is if it shows up again she we be headed for another Vat Surgery. Alice works and study’s hard and she is very warm, open and speak to and would work with anybody if necessary.
Alice and I believe eat clean with mindfulness meditation and being at peace helps with all things. What we find that works for us is being grateful while feeling blessed, hopeful and thankful. Controls what we can control. Vat surgery is lung surgery and when LMS recurs the lung is the common spot.
LMS surgery is the best protocol maybe spot radiation if surgery can’t get to it.
It’s critical to find a great surgeon and get your butt to either Dana Farber, Sloan Kettering or M.D. Anderson. Alice Vats surgery on July 7 2016 was a major success! Alice had it at Brigham and Women’s Hospital in Boston with Dr. Yolanda Colston. She works with Dr. Suzanne George at Dana Farber is one of the best!!!
Problem is people get treated by DR’s who don’t know about sarcoma’s and they want to throw chemo and other poisons into patients and see if it works…Because that is how they get paid. Thereby, A person has to be their own advocate and not do that stuff. The number one thing a person can do is believe in what they believe and that helps to keep the cancer away. Also we have Faith what we do… will keep the LMS at bay and away.
Tom Enright Mantra to live by:
Now is the time ~ 2018 was great.
It was yesterday ~ Tomorrow is not promised.
Today is the gold ~ The day is now.
The time is now ~ The present is now.
If we all live in now ~ We Accomplish ALL.
Move it forward!!!
We together have the answers.
It’s a combo recipe ~
It takes a village of committed people.
Are we in the now?
Yesterday we can live in the what if we changed that.
While Living in the Future is filled with what if and hope
Now the present is peaceful and manageable controllable
The teachers message is very clear us students make it complicated.
When the student is ready the teacher appears!
We just have to think NOW!!!
We need to fertilize the positive and weed the negative.
I am what I think ~ thoughts are powerful
I am blessed grateful thankful.
It’s a mindset and commitment to I am me
We are sooo blessed and sooo lucky
Whatever the I am you tell yourself you will become.
I am learning ~ It keeps us healthy on the inside
and the outside and it cleanses our heart <3
~ in his own words… Tom Enright 🙂
Other Options for Leiomyosarcoma…
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 2 months, her own 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 tostart growing again.
Another option that A Facebook friend reported in the past is that Dr. Breelyn Ann Wilky is using Keytruda every three weeks. Plus…. 10 mg. of Axitinib for Leiomyosarcoma and that she was so happy to report the three month scan from University of Miami in Florida showed 30% shrinkage on a leg tumor and that the tumors on the liver were gone.
In September 2011, at the young age of 29, Kamala was diagnosed with a rare cancer called leiomyosarcoma, which is a soft tissue cancer that develops in the supporting or connective tissues of the body, such as muscle, fat, nerves, blood vessels, bone and cartilage, the womb (uterus), and the limbs. Also as a mother of two young children (age 7 and 10) and a newlywed, she was heartbroken.
She was referred to a good team of doctors at the Brigham and Womens Hospital & Dana Farber Cancer Institute in Boston. The tumor was initially detected in her uterus and was classified as high grade and aggressive. She had a full hysterectomy and was in remission for two years, until she started having back pain in December 2013. After a few weeks of unbearable pain and unable to walk or sit, it was determined the cancer returned to two sections of her spine.
Kamala was airlifted to Boston on January 17,2014 where she also received six weeks of radiation. While hospitalized she developed a pulmonary embolism. After three months it was determined that the cancer once again spread. This time to her lungs. She and her family were devastated but she was ready to fight. Before she was able to start treatment she started having pain again. A pain which was becoming all too familiar to Kamala.
She knew that the cancer was in a new location.
After bone testing, it was determined that there was another tumor in the sternum. All of theses tumors cause Kamala…to be in extreme amounts of pain on a daily basis – – but she somehow continues to smile through it all. She started chemotherapy treatment in August 2014 and is currently still undergoing treatment. She travels to Boston every three months. The costs of these trips are an expense that she does not have in her budget but she must go to these visits as they are crucial a part of her treatment.
Kamala is a strong woman. If you know her, you know she is a bag of smiles, giggles and laughs! She is independent, smart, funny, and tough as nails. She has the spirit to fight her cancer, Therefore, She changed to a Vegan diet, alkaline water only, no sugar, no salt. I also started consuming apricot seeds.
There’s also a product called Medolife escozine… cost about $700 per month and you can get it at Escozine.com I started taking. I don’t know exactly what worked or if it was a combination of all. Even though I’m still battling…. but my life span has been longer than doctors expected.
For Cielo Superticioso I have followed her Facebook post since we met on July 4th, 2018 and you have taught me a lot in the groups you belong to. When it comes to LMS ..You are more likely to get more detailed answers about this topics on …. LMSDR FB support group for patients and caregivers. To join, you MUST answer the questions that appear when you hit the join button. The moderators appreciate full answers to their questions since it is a private closed groups.
When I was first diagnosed with LMS and began doing my research on the disease, I was lucky enough to come across the Leiomyosarcoma Support and Direct Research Foundation or LMSDR. Today I am pleased to have Sharon Anderson join us to talk about the LMSDR. ~David Carlson
You can find more information on their website: www.lmsdr.org or their FaceBook support group: https://www.facebook.com/groups/lmsdr/
Cancer Survivors and Supporters https://www.facebook.com/groups/CSndS/
Sarcoma Alliance https://www.facebook.com/groups/sarcomaalliance/
Sarcoma Cancer https://www.facebook.com/groups/sarcomacancergroup/
Leiomyosarcoma https://www.facebook.com/groups/2212557369/
Libby Shriver Initiative: http://www.sarcomahelp.org/stories/leiomyosarcoma-alan.html
In the poll : Where did your LMS begin? (add option if yours isn’t listed) in the one group LMS affects these areas the most Uterine = 135, Retroperitoneal = 49, IVC = 21, Thigh = 19 and Arm = 8. I was also surprised to learn that Leiomyosarcoma can affect large blood vessels, particularly the vein that carries blood from the lower part of the body back to the heart (inferior vena cava) and the artery that carries blood from the heart to the lungs (pulmonary artery).
Being my father had a heart attack in 2002. I wonder if bacteria from his stent placement may have been the culprit that also initiated the LMS, although his tumor was located on the breast bone…. Inferior vena cava (IVC) leiomyosarcoma is a rare malignant neoplasm more commonly seen in women in the fifth to sixth decade of life. Complete resection of the tumor with negative margins is the only Therapeutical option that has demonstrated a survival benefit. Cielo I am learning a great deal from the groups that you post in about the type of cancer that took my father life in 2006.
Martee L. Hensley, MD
Treatment with trabectedin (Yondelis) significantly improved progression-free survival (PFS) compared with dacarbazine in women with advanced uterine leiomyosarcoma, according to a subgroup analysis of the phase III SAR-3007 trial presented at the 2016 Society of Gynecologic Oncology Annual Meeting.
Panelists on this video are: William D. Tap, MD; Mark Agulnik, MD; Damon Reed, MD; Martee L. Hensley, MD; Shreyaskumar Patel, MD; and George D. Demetri, discuss the role of chemotherapy for the various histologies in soft tissue sarcoma and the options for patients with chemotherapy-insensitive subtypes.
RESOURCES:
LMS Boot Camp webinars were written by Sharon Welton Anderson, herself a LMS survivor & President of Leiomyosarcoma Support & Research Foundation. She talks openly and frankly about the most important things. . . you need to know to survive. Sharon’s knowledge comes from her research, discussions with sarcoma experts and personal experience helping patients since 2002, after she was diagnosed with stage 4 ULMS. For more guidance from leiomyosarcoma survivors see Words of Wisdom.
https://globalgenes.org/raredaily/my-best-advice-as-a-caregiver-by-annie-achee-of-the-national-leriomyosarcoma-foundation/ https://globalgenes.org/raredaily/leiomyosarcoma-survivor-appreciates-bracelet-of-hope/
Other Sarcoma Recommended Resources: Patient Stories https://mdandersontlc.libguides.com/sarcoma/stories
http://www.ebooksdownloads.xyz/search/my-vegetarian-journey
http://sarcomahelp.org/stories/leiomyosarcoma-lynn.html
It was November of 2008 and has been over 10 years since I was diagnosed with Uterine Leiomyosarcoma. I changed my lifestyle radically to remove stress and consume food like it was my medicine. I was given a 20% change of living 5 years, and I survived. I’ve started a blog to share Integrative and Natural Treatments for Uterine Leiomyosarcoma. It’s also positive site, looking at the many ways we can enable the immune system to fight cancer. … and empowering my immune system.” Jeannie Ross Leiomyosarcoma survivor.