Leiomyosarcoma patients turn to food to help with cancer

 

cancer stats

These statistics show how many people can be diagnosed with cancers that are well known versus that of Leiomyosarcoma patients.

There are many cancers that affect the human body; some are well known by the entire world and some are rare.  Leiomyosarcoma (LMS) is a type of rare cancer that affects the muscle tissues of the human body. Smooth muscle cells make up the involuntary muscles, which are found in most parts of the body, including the uterus, stomach and intestines, the walls of all blood vessels, and the skin.  It is therefore possible for LMS to appear at any site in the body.  The first case of LMS was found in 1994, according to a Case Study done by the University of Ontario.  This cancer only accounts for 5%-10% of all soft tissue sarcomasFamous people like Padma L. Atluri, a writer for 90210 and Men in Trees, and Katie Price (Jordan), an English media personality, both suffered from LMS.  Cancer doesn’t discriminate who it will affect, but there are plenty of treatment options for people suffering from LMS.  Treatment options include traditional methods (surgery, radiation, and chemotherapy) and alternative methods (I.V. injections from Europe, herbal immune tinctures, and infrared sauna bed), both of which can benefit from a drastic diet change.

sprouts

Brussels sprouts are one of the cruciferous vegetables recommended for LMS patients to eat. This delicious dish with brussels sprouts was made by a chef at a Fry’s Marketplace located in Phoenix, Arizona (Photo By Christina Thompson 2012).

When looking at the traditional methods of curing LMS, most doctors will say that surgery is the best option.  Chemotherapy and radiation are there to help get the tumor small enough to operate on. “Radiotherapy may be a useful additive to improve local control or where cancer is inoperable.  In some cases of high-grade leiomyosarcoma, chemotherapy may have a role to reduce the risk of recurrence or to improve operability.  It is important to realize that the treatment of leiomyosarcoma is a complicated process.  Associated with the treatment of the disease are the very real long-term sequels of these treatments in those in whom they establish a cure.  The surgical sequel can be serious and immediately evident following a wide excision of primary tumors,” says the Virtual Medical Center.   The outcome and affects that each of these treatments have on a single person with LMS, all depends on their own immune system.  When LMS patients chose surgery, their survival rate significantly increases to about 90% for five years.  Rosalie Peipert, an LMS patient, wrote a blog about her struggles with this rare cancer.  In the blog she says, “My tumors were hanging outside the lungs like icicles (spindle cells). Almost 3 years later I had to have the same operation for 4 more nodes in both lungs. This is a very painful surgery because it hurts to breathe in the beginning and the sternum hurts from being opened. Only thing was the drugs hyped me up so badly, I never slept and couldn’t rest in bed. This time, I asked for someone to come down and see me from the Pain Clinic. It was a big help. I had an epidural and the PCA pump. I don’t know why my first surgeon did not tell me I didn’t have to suffer the way I did. I have never had chemo or radiation. I have a low grade LMS. I was very lucky that I could be a candidate for surgery.”  Many patients with LMS are like Rosalie.  She goes on to say, “Update: April 2000…my fight is ongoing. I had surgery to remove a 7 cm retroperitoneal tumor on March 8, 2000. It was encapsulated and taken out. No other tumors. It was LMS again. After almost 19 yrs, it returned to the scene of the original crime in the pelvic area.  Update: March 2001…I had another recurrence in both lungs.  Update: November 2001… I have been on hormone therapy 9 months now and am stable. Update: 2006… June 24th, my family and I celebrated a duel anniversary, my 25th year of survival of low grade myxoid LMS/ESS and our 50th wedding anniversary.”  The treatment options and life of people who get the diagnosis of Leiomyosarcoma; they have surgery or chemotherapy to get rid of the cancer and it will come back in a different area.

Dr. Peter Mathern, an oncologist in Phoenix, Arizona, discusses why LMS patients should chose to go the traditional therapy route, over just a diet change or alternative therapies.

berries

Whole, organic cranberries containing cancer fighting antioxidants purchased at Sprouts Farmers’ Market stores located in Phoenix, Arizona, can be turned into a great sauce for holiday meals (Photo By Christina Thompson 2012).

Although most doctors will say that traditional methods are the only way to cure LMS, there are new alternative methods being discovered all the time.  Dr. Joe Brown, N.M.D., of Tempe, Arizona, offers LMS patients (along with many other cancer types) different treatment options besides the traditional methods.  Dr. Brown’s website lists some of the options including: “Ukrain (Chelidonium Majus) I.V. Mixture, Immune Injection Therapy with Engystol, Acupuncture with Heat and Stimulation, and Oral Vitamin Supplementation.”  Researchers at the Fred Hutchinson Cancer Research Center are revolutionizing alternative cancer treatments by using Immunotherapy to help patients treat LMS and other cancers.  Cancer immunotherapy attempts to stimulate the immune system to reject and destroy tumors.   There are many types of cancer immunotherapy treatments.  Wikipedia talks about one called, “Dendritic cells can be stimulated to activate a cytotoxic response towards an antigen. Dendritic cells, a type of antigen presenting cell, are harvested from a patient. These cells are then either pulsed with an antigen or transfected with a viral vector. Upon transfusion back into the patient these activated cells present tumor antigen to effector lymphocytes (CD4+ T cells, CD8+ T cells, and B cells). This initiates a cytotoxic response to occur against cells expressing tumor antigens (against which the adaptive response has now been primed). The Dendreon cancer vaccineProvenge, is one example of this approach.”  Alternative treatment options are always being discovered to help patients cope with LMS, as well as other cancers.

Dr. Joe Brown, a Naturopathic M.D. out of Tempe, Arizona, talks about why alternative therapy treatments, a diet change, or a combination of all three methods of treatment are best for LMS patients.

peppers

These organic peppers containing some capsaicin can be bought at your local farmers market (Photo By Christina Thompson 2012).

Although there are alternative and traditional treatment methods, some people believe that a diet change can completely cure cancer.  Doctors have done studies and they have found that it can help cure cancer along with a treatment method.  “Up to 40% of cancer patients die from complications of malnutrition, not from the disease itself,” say Dr. David Katz and Dr. Keith Block.  Chef Nancy out of Santa Fe, New Mexico wrote a book and created a website dedicated to helping people with better nutrition and diets during cancer.  The website says, “Chef Nancy creates recipes to keep you off the operating table and out of chemotherapy.”  The website also offers a blog, in which Chef Nancy talks about different foods and vitamins that both support and take away from curing cancer.  William W. Li, M.D., President and Medical Director of The Angiogenesis Foundation, created a post on the Dr. Oz website, where he talks about the best foods to go shopping for to cure cancer.  The Cancer Cure Foundation also offers a page on their site about food and spices that can help fight cancer including garlic, broccoli, leafy greens, nuts, lemon, raspberries, and chili peppers like jalapenos.  “They found capsaicin, an ingredient of jalapeno peppers, triggers cancer cell death by attacking mitochondria – the cells’ energy-generating boiler rooms.  The research raises the possibility that other cancer drugs could be developed to target mitochondria,” says an article published by the BBC.  The American Institute of Cancer Research (AICR) also has a page where they talk about, “how food can both directly and indirectly fight cancer.”  AICR says, “Fill at least 2/3 of your plate with vegetables, fruit, whole grains and beans.” The diet choices made by individuals will help cure their cancer, be it LMS or another type.

drinks

These drinks are natural healthy drinks created by Bolthouse Farms and are located at any supermarket near you (Photo By Christina Thompson 2012).

The research being done to find a cure for Leiomyosarcoma or other cancers maybe in the diet choices a person makes.  Traditional and alternative therapy methods of treating LMS are improved by proper diet choices.  In the southwest, a person with LMS might want to shop at Sprouts, “an independent natural foods grocery store chain that focuses on “healthy living for less.” We sell farm-fresh produce and thousands of natural, organic and great-tasting mainstream foods at remarkably low prices, in a non-traditional farmers’ market-type setting.”  Another natural grocery store LMS patients can frequent located anywhere in the US for healthy foods and organic produce is Whole Foods Market.  The Garden Fresh Restaurant Corporation created Souplantation and Sweet Tomatoes restaurants to offer more healthy dining choices for people and would benefit people suffering from LMS or other cancers.  “With 112 company-owned restaurants in 15 states, over 300 million guests since 1978 have helped us to be #1 in fresh produce and salads, made-from-scratch soups, hot-tossed pastas, freshly baked breads and muffins, fresh fruit, frozen yogurt, and more,” says the Sweet Tomato website.  There are plenty of places for LMS patients to shop and eat healthy to help their cancer treatments across the US.

grains

These are healthy grains that can be added to your diet to help fight LMS and they are located at your natural health food store (Photo By Christina Thompson 2012).

People who are diagnosed with Leiomyosarcoma may think that they or that their families are alone in dealing with this disease.  This is not true because on Facebook, a page was created for LMS patients and their families called Leiomyosarcoma Awareness.  LMS patients are not the only one searching for a cure for their cancer or disease; plenty of people are, especially in alternative therapies.  One place a person might look is at Reddit, which has a subreddit for Alternative Health, where people post pages about possible alternative ways of curing diseases like LMS and other cancers.  No one is alone in his or her fight to survive and cure cancer.  Everyone is out there trying to find a cure, whether it’s by traditional, alternative, a combination of methods, or just eating healthier.

 

**Author’s Note: Please see your physicians for the right treatments for you or your loved one. This research was done 3 years ago and many new therapies and answers to help have come along. I am NOT a doctor; I am just a journalist that wanted to do                                                       a story on two subjects that were close to her.**

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48 comments

  1. Hi, Why did you start to research leiomyosarcoma?

    • Christina M. Thompson says:

      I researched LMS because my mother actually has this type of cancer. She has her second bout of it right now. I wanted to make the world more aware of this type of cancer since it is pretty rare and mostly only happens in women.

      • Melissa Dutton says:

        I hope that everything goes well for your mother. It is a very hard disease to live with.

      • Lara says:

        Hello Christina,
        Thank you for sharing this with us! Do you have specific food recommendations for LMS?
        Is it known what LMS hates most to get in the stomach etc.?
        Thanks for replying! And all the best for your mother and you family! Lara

      • aung kyaw says:

        Hello Christina,
        My name is Aung Kyaw. I’m from Myanmar which is located in south east Asian. I’m sorry to hear about you mom. I am now writing this letter to you because my girlfriend is also facing the same problem of Leiomyosarcoma on her left thigh. She had done the rediration, chemotherapy, and surgery and we just done the surgery last night. I have a suggestion for you which is according to my doctor which is to change the life style that mean you have to change the kind of good you eat and the kind of water or drinks you have and the kind of air that you breath in everyday.
        According to the doctor the kind of you air that you breath is difficult to control. Because if you are staying in a city where there are so many people, it is very difficult the control the population, garments and cars. But we can change the food that we eat everyday and the water or the drinks that we drink everyday. According to her, if you have the food or drinks that are organic the cancer cells can’t stay longer in our body because our body is in good resistance. So now I change my mind to give her best organic food like organic vegetables, organic fruits and purified drinking water and lots of juice that are organic now.
        I am writing this letter maybe it something or my idea about the health may help you. And I wish your mom will be the most healthy woman in the world soon. Bye !

      • Linda Dutton says:

        Thank you for writing this information..it’s very useful I’m looking into diet change for myself.. I was diagnosed in February 2014 with LMS had extensive surgery, I was told I was all clear and to go and enjoy my life..only to find 12 months later it’s back in four different areas. Shoulder, hip underarm and rib..I’m wondering if anybody has tried the ketogenic die? I’m making changes all the time to eat healthier and include lots of antioxidants..

  2. Babygotback85 says:

    Thank you. My mother has been diagnosed with leiomyosarcoma in her small intestine. This is also her 2nd time going through this. Doctors dont sound very positive but we are staying strong. It’s just so rare with little research on how to treat it. My Mother has diagnosed with GIST for about 1 month before she found a pathologist who gave her the right diagnosis. Stay strong.

  3. Melissa Dutton says:

    I have been battling LMS since 2009. It started as a uterine fibroid. I have had 3 surgeries and 2 rounds of chemo (6 sessions each). I am getting ready to go into the clinica trial at John’s Hopkins next week.

  4. Nadine says:

    I was first diagnosed with Uterine LMS in 2008. Then again in 2010 and now a 3rd time 2 months ago…I opted for Iscador treatments and found out that I am 6 weeks pregnant. I am worried what effect this pregnancy will have on my LMS. Should I continue and have the baby or is it to risky. I am 38 years old and after 2 sets if chemotherapy in 2008 and 2010 I not really supposed to be fertile at all. Please help.

    • Christina M. Thompson says:

      Nadine-

      I am NOT a doctor. I am just a journalist who wrote this story. The best advice I can give you is to see your physicians and get second and third opinions if you have to. Always see medical professionals. They have the medical degrees. 🙂

  5. Marissia Baird says:

    I was diagnosed 9/22/12 w/ LMS . I eat very clean, take a lot vitamins and juice at least 32 oz. a day. I have completed 20 rounds of chemo and will continue until I find something else. I am waiting for the results from Exome Sequencing, hoping to find a custom treatment for my 6 tumors. I’ll comment back on how that turned out. This site was very helpful.

    • Lara says:

      Hi Marissia,
      Where did you get this sequencing? Did you have the outcome already? I am also suffering
      to LMS and seeking for treatment. Regards, Lara

      • Bernadette says:

        Hi Lara,

        I just happen to read your question to Marissia, who is my daughter. She had her sequencing done through Mayo who sent it to Baylor Medical Center. Presently, she has stopped the chemotherapy and is solely doing diet, exercise, nutrients and prayer. The chemo after 25 rounds was becoming too toxic. She feels much better and her quality of life has improved significantly. Thanks, Bernadette (Mom)

        • pauline says:

          hi i was told i hah lms 22 july 2015. i just started to understand it all. i agree with you about what to do ourselves. i am a christian and stand it prayer with you for your daughter. may God bless you both. -pauline

  6. Jeannie says:

    I am a five year survivor of Uterine Leiomyosarcoma. Please visit my blog and my Facebook page dedicated to fighting recurrence of ULMS by strengthening the immune system.

      • Jeannie says:

        In this video I discuss the principles of the integrative and natural anticancer lifestyle that has prevented the recurrence of an extremely aggressive case of uterine leiomyosarcoma. I was diagnosed with Stage III uterine leiomyosarcoma in 2008. It was removed by morcellation (cut into tiny bits before removing through my belly button), so the microscopic cancer cells were spread all over my abdomen. The lab reported an extremely high mitotic count of 100 per 10X magnification field. (Only 8 to 10 per 10X is considered aggressive) Yes, it is a complete change of lifestyle, but a welcome one. It has been 5 years, 4 months with no recurrence of the disease. My doctor says, “Remarkable! Keep doing what you are doing.”

        https://www.youtube.com/watch?v=vEx3Oavq9wk

  7. Harriet Woodward says:

    Hi! I’m a 6th form student in the UK doing a study into the possibility of Anti-CD47 treatment for LMS. Part of my project is to find alternative solutions and this is very interesting. May I ask what year you added this to your site?

    Sending all the best to your mother (and anyone else suffering for LMS) and hoping she gets through it 🙂

  8. Damodar N Abbai INDIA says:

    Madam Christina
    May god help your mother recover and bless her with long life. I am writing from India, my wife is a Doctor by profession. She had about 22 years experience in Anesthesiology worked for big corporate hospital. She was diagnosed utirine LMS in August 2013. She was admitted with severe stomach ache and posted for histrectomy. After the operation biopsy was and found it was LMS. She was treated with radio therapy for about 28 days. Later after 40 days she got scan done and found metastasis in langue and liver and also about 7cms growth in the uterus area. Immediately chemotherapy (AIM) was started and given five cycles till now with three to four week interval in between. After third chemo PetCT Scan was done found that no trace of LMS activity in her total body. Along with chemo she has taken alternative medicine given by 98 year old Dr.Dodi from Tibet living in India in a Tibetian camp in Dharmasala where Dalilama lives. He was personal physician for Dalilama for about 30 years. This medicine is made from herbs available in Himalayan Hills. We know the cancer survivors who are living for more than 18 years after using this medicine. It is working for all types of cancer including blood cancer, brain cancer etc.. My wife is recovering after 5th chemo side effects. We are hopefull that she will lead normal life in future. I will be posting her prognosis here continuously if you permit me.
    Regards,
    Damodar N Abbai

    • Christina M. Thompson says:

      Damodar,

      Please feel free to keep posting on here as I am sure people besides me and mother would like to know what is going on with your wife and her treatments.

      I am sorry to hear that your wife is amongst the people who have this rare disease. I am very glad to see that she is seeking alternative treatments with such high survival rates. May God also bless you, your wife, and family.

      Love and Light!
      -Christina

      • Damodar Abbai says:

        Dear all
        May god help all of you to get rid LMS by whatever treatment you follow. I am sorry I could not post update on my wife Dr.Bharathi’s prognosis. She is completely recovered from LMS
        and she has joined back to her duty from 1st August 2014. She is very happy after starting her work. She is still taking alternative medicine from Dr.Dhondhen and also taking Salvestrol capsules of Salva care Bio technologies Ltd. New Zealand. We are getting her ultra sound abdomen done once in two months. She meditates regularly. Completely avoiding any type of irritation in her regular life. My wife is a brave person who will win on LMS and inspire others to get rid of it. After a month from now we would like to get her Pet Scan done with advice of her Doctors. I will post the update then.

        I am giving the complete address of Dr.Yeshi Dhondhen below for interested people.
        These medicines cost us less than $40 for two months period.

        Dr Yeshi Dhonden Tibetan Herbal Clinic,
        Ashoka Niwas , Mcleod Ganj – 176219
        Dharamsala, (H.P.),India

        How to get Coupon (Registration) :
        Line for Coupon Starts at Morning 5 A.M.
        Coupon Distribution starts at 2 P.M. 
        (Coupon will enable one person to consult the Doctor on Next Day)

        Updated Clinic Hours : 

        Sunday to Friday 9:30 A.M – 2:30 P.M (Closed on Saturday)
        Dr Yeshi Dhonden sees only 60 Patients a day. Sunday coupon will be 
        distributed on friday.
        Ph : +91 1892-221461.  

        Important Notice :

        Dr Yeshi Dhonden Clinic has no access to email so Patients are 
        advised to send copies of test reports directly to 
        Dr Yeshi Dhonden Clinic address for further advise / treatment. 
        Though it is always better to visit someone 
        from Patient’s family along with reports 
        if Patient is not in condition to visit the clinic. 

        How to Reach :

        Pathankot / Chakki Bank Via Rail then Three Hours by Road,
        Daily Flights to Dharmshala from Delhi. 
        (McLeod Ganj is 1/2 hour from Airport).

        Where to Stay :

        Tibetan Ashoka Guest House,
        Jogibara Road, Mcleod Ganj – 176219
        Dharamsala, (H.P.),India
        Ph : +91 1892-221763,221635

        There are many Guest House / Hotels Nearby 
        Dr Yeshi Dhonden Tibetan Herbal Clinic, 
        You may get a guest house at very reasonable rate 
        ranging from $5 to $20 per day 
        and Hotels rooms are available for $100 to $300 per day. 

        Finally I would like to inform you all about another miracle I have come across in recent days in my next update in few days.

        with regards,
        N.Damodar Abbai 

    • mishlyn stephen says:

      Hi
      i need to get in contact with Dr Dodi.
      How can i do this?
      i have a friend with LMS and taking Chemo, had his second bout but no change in tumor.
      i would really like to know what herbs you were taking that help get rid of that tumor after the 3rd bout of chemo

      • Rosa says:

        I’ve looked into this and its actually spelt “yeshi donden” the dalai lamas old physician in Daramasla india.

        For now Get him pronto onto a naturopathic Doctor in the uk specialising in cancer and see http://www.canceractive.com for several and tons of other info. Good place to start.

        Rosa

  9. Lisa says:

    Great suggestions! Clinical LMS trials at the Dana-Farber Cancer Institute in Boston gifted my Mom extra years to keep living it up throughout her battle with leiomyosarcoma. A healthy diet can only help. I hope your Mom continues to battle onward and upward. Project Sandy Toes and Soggy Dollars is determined to help,find a cure for LMS. Like us on Facebook and keep up with our cause. Another great group of people to,follow is Miles 2 Give. They are dedicate to finding a cure and bringing attention to all forms of sarcoma.

  10. Sarah Seymour says:

    My partner passed away from Leiomyosarcoma. She went on drug trials and fought hard. Please don’t hesitate to email me. Sarah

  11. Rosa says:

    Hello All,
    I have stage 4 ULMS and am following an intensive natural
    Program juicing and vitamins, coffee enemas etc. I’ve just finishes 6 rounds of chemo, doxy, with great shrinkage . I’m very interested in hearing from Harriet Woodward and and Dobbodar Abai. How is your wife doing ? Harriet are there uk trials for CD 47 planned ? I know Stanford in the states are doing one. Where are you studying? Please email me on rosa@danslapoche.com. Christine, how is your mum ? Have you heard more from either of these two, their posts were very interesting and unusual . Thanks keep fighting everyone xxx

    • Paul Morgan says:

      Hi Rosa,

      I’m glad to hear your recent good news! My mum was diagnosed with ULMS about 2.5 months ago. She underwent Radical Hysterectomy which was very successful with wide margins however further review of the original scans showed 3 very small nodules in her lungs and slightly swollen pelvic lymph nodes. So they are suspicious of metastasis and she has been referred to specialist sarcoma hospital in London (Royal Marsden) which we will visit next week. The tumour itself was high grade however she has not yet been staged (I assume because the scans could not positively identify the spread). I am very interested in getting her on a healthy diet and supplements as there seems to be some positive results from what I have researched. I’ve also heard about a supplement called Melatonin that a lot of people have used with good success but my knowledge in this area is limited!

      Anyway I am glad to hear you are well and long may it continue!

      Paul x

      • Rosa says:

        Hey Paul, So sorry to hear your Muns news. i m also being treated at the marsden, but i ve found the sarcoma team pretty disorganised, long story !

        Im currently recovering from laser lung surgery a week ago, privately By professor Axel Rolle in Coswig Germany see :
        http://www.youtube.com/watch?v=H3VH4fQ9Mks

        as the marsden wouldn’t operate!!! But Rolle got it all out ; )

        next step radiotherapy at the Marsden on my abdomen , & phoenix tears ( worth a try for me, look it up )

        Do Find a naturopathic Doctor to work with your Mum on the supplements, juicing etc, blood tests etc, see canceractive.com. Any questions please ask on rosa@danslapoche.com

        Love n light

        Rosa x

  12. Kay says:

    My mom got diagnosed with LMS last year sept. Once she got diagnosed it seemed to just go down hill. Started in uterus and transfered to her lungs. 2 weeks ago she complained of her hand going numb. 2 days later she was in the ER because her arm was numb, which was when they found the tumor in her brain. The doctors initially gave her 6 months when finding the brain tumor. The day she was getting out of the hospital she was having trouble with her leg and they found another brain tumor. Gave her 3 months. I’m really close to my mom so this is very hard for me to even talk about, and on top of it i’m having her 2nd grandchild (and i’m an only child) and i’m not due until january. Its been a rough and extremely upsetting year. We are looking into everything possible but the doctors officially said they will not do anymore surgery, chemo, or radiation to even try shrinking the tumors. Just need prayers. Thank you

    • Hadiya Bradshaw says:

      Hi Kay! I’m sorry to hear about your mom and I hope that your delivery went well with your 2nd child this past January. I am going through the same thing with my mom. It is not in her brain however. The doctor’s have given her a month to live and they will not be doing any other treatments or surgeries on her either. Do you have any advice? Do you have an update on your mom?

  13. james probert says:

    I was just diagnosed with leiomyosarcoma. I do not know what stage I’m in, but the fact that the CT scan shows it surrounding my aortic artery and also the pain I have at night indicates a rather late stage I would think. I hope to begin radiation within a week and would like to begin a diet that gives me the best chance of success in shrinking the tumor to an operative size. Can anyone give me a grocery list or refer me to one. I’d sure appreciate any help I can get.

    • Damodar Abbai says:

      Hi James
      Be brave and fight with this decease, I am sure you will win and you lead normal life soon.
      Please try to find out Soursop fruit is available in your place. In India it is called as Laxman Phal(fruit). You can search on web. This will help you to get rid of LMS. This will not do any harm. Lot of info is available on the web about this. You can take your own decession after going through that info.
      The reason why I am suggesting soursop to you is I have seen recently a youngster about 19 years old studying 2nd year Engineering has attacked Blood cancer. He was treated with chemo for three times later Doctors told him to take good food. Along with non-vegetarian food he had soursoup fruit. Recently he went for checkup and came to know that no trace of cancer in his blood and his HB level reached 17.
      He has not taken Tibetian Medicine because he should not non-veg food along with Tibetian medicine. Now is happily attending his college.

      I pray god to give you good health and speedy recovery.
      May god bless you.
      Damodar

  14. Madan says:

    This message is for Mr. Damodar Abbai. I am looking for alternative / Ayurveda / plant and fruit based medication on lifestyle changes for my Mother. She has got a recurrence of cysts recently. As I am from India, I would like to contact Mr. Damodar, to get first hand information, opinion / suggestions regarding medicine from Dr. Yeshi Dhondhen and Salvestrol capsules , proceed as soon as possible.

    My email address is contactmadansarathy@gmail.com – I would be greatful if you could mail me your contact number and suitable time when i can call you. Thank you.

    Thank you Christina, for providing us this medium.

  15. Tom Enright says:

    My wife was just diagnosed with urterine leiomyosarcoma. We will have surgery soon to get tumor out. We pray the cancer is/was confined to the uterus. What advice does anyone have in relation to treatment? What is health plan for eating ,juicing ,programs are you on? What have you stopped drinking /eating ?tomenright@savalfoods.com is my email address. Please share any and all ideas that have worked for you. We can together !

  16. Damodar Abbai says:

    Dear All
    After 10 months of fifth chemo my wife Dr.Bharathi has secondaries in three places including the original place. I am taking her to Doctor today, as per the advise we may go for chemo again. Pl let me know is there any other way to treat this LMS? I will keep updating status. Pl do help me if you have any advise or suggestion.
    Regards
    Damodar

  17. Rosa says:

    Jeannie is a 5 year ULMS survivor, her blog has a lot of useful info:

    http://uterine-leiomyosarcoma.blogspot.co.uk

  18. Janet says:

    my husband had surgery at sloan kettering hospital in NY on Oct 1 2014 for a 8in tumor of lms removed to find it was locialized tumor 6mths later he was told 3 nodules were found in his lungs mm at size. my husband is 56 years old and wants to beat this how can you help.

  19. Janet says:

    the was located outside his prostate

  20. Ankit says:

    Hello people,
    I am from india. My mother incidentally diagnosed with uterus LMS in her biopsy report which was done after we thought it was just a fibroid in her uterus. To be on the safer side doctor removed the uterus along with Fallopian tube and ovaries. She then got her ct scan done of her abdomen and chest and doctors found no trace of LMS till now. Doctors advices to follow up after two months. Doctors said there is no need of chemo or radio as of now. ( spindle cell are almost resistable of chemo and radio) recently I have heard a lot about Dr. Kaushal of Sim vedic cancer treatment(just google it please and you will find all relevant information about Dr kaushal of sumo vedic) after seeing so many recurrence after initial diagnosis, I want to get her on these alternative therapies and healthy diet. I have taken appointment with Dr. Kaushal on 30th may 15. Will share with you the outcome of the meeting and seriously pray for no recurrence ever.

  21. Kristi says:

    I am new to this site. I was first diagnosed with LMS in 2009 when it ruptured in my small intestine and caused me to hemorrhage. Since then I have had seven surgeries, six in my abdomen and one in my left lung. I have refused any form of traditional chemotherapy as the odds were less than 25% success (or greater than 75% failure, depending on how you look at it.) I am sticking with surgery for now. I did one clinical trial at Oregon Health and Science University using OPT-821 and another drug or a placebo with OPT-821. I was in remission for two years. Six months after my last injection, the LMS returned in my small intestine again. I can’t get the OPT821 as the DEA has not released it. I can’t even find out if i got only the OPT821 alone or with the immunosuppressive drug. There wasn’t enough evidence that it helped to continue with the study. I am frustrated now that all the clinical trials require that the patient has had standard chemotherapy and failed. I honestly cannot understand why a patient should go through the hell of chemotherapy, knowing it won’t help, in order to be eligible for further clinical trials. It is a waste of time and money, not to mention the suffering that comes with chemotherapy.

    I am embarking on a diet with juicing and came to this site to find recipes and information on what fruits and vegetables are recommended. I will check out some of the links to find things that I can make. Thanks to all of you who have offered these links.

    I have had to retire as a registered nurse due to the frequency of the surgeries and the extent of my disease, which is stage 4. Each surgery takes longer to recover and I have never gotten back to my baseline. I hope that juicing and smoothies will help to some degree. In the meantime, I am researching immunotherapy and diet. I think this is our only hope. Thank you for your time and interest in my story.

    Namaste’
    Kristi

  22. Pankaj says:

    Firstly, I applaud the initiative of Christina on bringing together people dealing with this rare sarcoma – LMS. Wish you the best in pursuing your passion with food and writing. May this noble deed bring you all the divine powers that help your mother fight LMS and live well and happy.
    Unlike LMS being common with women, my father was diagnosed with LMS in Sept 2010 after a kidney tumor was detected that led to immediate nephrectomy – removal of the right kidney. Immediately after , the PET CT scan identified metastatic growth in the lungs but the nodules were too small to be disturbed. It’s been a long journey since that which thankfully were still continuing and pursuing the fight. Our oncologist suggested no Chemo or radiation as this type of sarcoma responds poorly to those treatments. After about 15 months he was prescribed some oral drugs that only brought an onset of extreme side effects. Maybe these did slow the growth of the nodules though they multiplied over the years. He also has tablets of curcumin( an extract of turmeric – tablets available in India and can be couriered anywhere in the world) which is researched which could also have contributed to his fight so far. You can google about it and if interested I can provide details on how to procure it. The disease has spread and grown over the years from lungs to D8 vertebrae, to right cheek and also some lumps on the head. We are recently encouraged by the story of Damodar Abbai and I recently visited Dr Yeshi Dhonden and got the medicines for a month. I hope to be able to continue to contribute and share feedback on dealing with this complex LMS that’s been part of our lives for almost 5 years now.

  23. Pankaj says:

    Apologies but I noted a spell error in my email just as I clicked post comment – can it be corrected – it was entered as hormail instead of hotmail

  24. Shan says:

    Had hysterectomy followed by pelvic radiaton which seemed to clear a problem pelvic shadow on ct. Did OK for awhile, returned to work. Then lung spots discovered. Had thoracotomy lung tumours removed. But still some small ones. I would really like to hear from someone who had successful chemo. I eat clean walk daily and have lost weight intentionally. Scared witless. No family history. This came out of nowhere but who knows with all the chemicals in the air and our food. Namaste and prayers going out to everyone.

  25. sophia says:

    my grandmother had died from it five years ago and i just wanted to lrean more about it!

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