May 15, 2017

Leiomyosarcoma


Here’s a free collection of resources about leiomyosarcoma (LMS cancer)- Leiomyosarcoma blogs, videos, support groups, first-hand experiences and advice from people who have leiomyosarcoma, etc.

Jump to:


 

Leiomyosarcoma Blogs

Here’s a list of leiomyosarcoma blogs- blogs written by people with leiomyosarcoma, or about LMS cancer.

****Email alexbalinski@gmail.com to submit your blog to this list.***

NLMSF Research News nlmsf.org 2017
The Leiomyosarcoma Blog nlmsf.org 2015

 

Leiomyosarcoma Support Groups

Leiomyosarcoma Support Groups On Facebook

  1. Leiomyosarcoma Direct Research Foundation (2071 members)
  2. Leiomyosarcoma Direct Research Foundation Facebook Group (2,057 members)
  3. Leiomyosarcoma Group (887 members)
  4. Leiomyosarcoma Support Group (556 members)
  5. Leiomyosarcoma Awareness (410 members)
  6. Del’s Knee Warriors (381 members)

Other Leiomyosarcoma Support Groups And Forums

  1. LMSarcoma Yahoo Group (1,798 members)

 

Leiomyosarcoma Survey

We’re surveying people about their experiences with leiomyosarcoma. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with leiomyosarcoma**


Leiomyosarcoma Symptoms

What symptoms have you experienced?

  • There’s a lump. (Ferilyn G., 32 years old)
  • Urination problems led me to my diagnosis. (James H., 38 years old)
  • Extreme pain, a tumor the size of a football, PTSD, anxiety, nerve pain. (Vicki, 42 years old)
  • ULMS bleeding, hip pain, lung pain, labored breathing, fatigue, loss of strength in my legs. (Kimberly N., 47 years old)
  • Pain in stomach area. (AC, 50 years old)
  • Lump. (Genevieve, 56 years old)
  • Felt like a UTI which lead to the discovery of tumors. Although not directly attributed to the cancer yet, I have chronic hives, insomnia, bouts of chest pains followed by burps, leg cramps, and toe spasms. (Jean, 58 years old)
  • Very strong abdominal pain – labor like. Acute constipation. (Maria R., 59 years old)
  • Malignant tumors in abdomen. (Marian B., 63 years old)
  • Pain and fatigue. (Mary Anne, 68 years old)
  • Originally I had pain in my side, since they removed my adrenal gland I have not had any pain. (Judy, 72 years old)
  • Shortness of breath, extreme loss of appetite, general weakness, and failure to thrive. (Norma N., 86 years old)

Leiomyosarcoma Facts

What are some facts you’ve learned about leiomyosarcoma?

  • It came from a virus. (Ferilyn G., 32 years old)
  • It’s evil. (Vicki, 42 years old)
  • It is aggressive and there is no cure. (Kimberly N., 47 years old)
  • Sarcoma is rare. (AC, 50 years old)
  • I have a rare form … submandibular. (Genevieve, 56 years old)
  • It is rare and aggressive. (April M., 57 years old)
  • Wow. I learned to stop researching after my initial search for my own mental health. I am Stage 4 with reoccurrence so this may not be for everyone, but it was incapacitating to read that I have a life expectancy of 12 to 15 months. (Jean, 58 years old)
  • It is a rare, aggressive cancer, likely not to respond to chemo or radiation. The only way is surgery. (Maria R., 59 years old)
  • It does not get treated with chemo or radiation. (Marian B., 63 years old)
  • It is a rare cancer and it is KEY to go to a large Sarcoma Center for treatment. (Mary Anne, 68 years old)
  • Most chemo doesn’t work and it’s not curable right now. (Judy, 72 years old)
  • It can be diagnosed, and sit in the body dormant, not growing for many years, then suddenly start growing again very rapidly, and cause death in mere months. (Norma N., 86 years old)

Leiomyosarcoma Pain Management

What are effective ways to manage your pain (if applicable)?

  • For two years ibuprofen and I suffered. Finally I have a palliative care doctor, and I take OxyContin. It does not always work, but it’s better than nothing. (Kimberly N., 47 years old)
  • Once chemo started, the pain that helped diagnose the sarcoma has gone away. (AC, 50 years old)
  • I fortunately don’t have pain at this time. (Jean, 58 years old)
  • Reiki, therapeutic massage, reflexology, meditation and physical therapy when possible. Medication when needed, under doctors’ advice. (Mary Anne, 68 years old)
  • I had almost no pain, but was prescribed low doses of morphine to manage breathing issues since my cancer was blocking my airway. (Norma N., 86 years old)

Leiomyosarcoma Difficulties

What are the hardest aspects of living with leiomyosarcoma?

  • The mental aspect of having a rare and aggressive cancer, plus having a wife and two young boys, 9 and 5. (James H., 38 years old)
  • The fear of the unknown. (Vicki, 42 years old)
  • Loss. I’ve lost my job. My health. My security. My time. My sanity. My boyfriend of six years. My house soon. My entire life. I cannot live every day happily and enjoy it. Everyone says that, and it infuriates me. If not for my son then I may as well already be dead. (Kimberly N., 47 years old)
  • 1) Pain in legs after chemo treatment 2) There are days that I have no taste and water and food taste like nothing. (AC, 50 years old)
  • Having trouble swallowing due to radiation treatment. I can’t eat certain foods. (Genevieve, 56 years old)
  • Thinking that everything weird that goes on with your body is the cancer coming back. (Jean, 58 years old)
  • Uncertainty of return – for now – I had surgery in February 2015 – NED since then. (Maria R., 59 years old)
  • Uncertainty. (Marian B., 63 years old)
  • The waiting and wondering on when and where the next new disease will show up. The anxiety and the fatigue, and also having to find a new way of living a new normal. (Mary Anne, 68 years old)
  • It was the chemo. (Judy, 72 years old)
  • Helping my family deal with loss, and trying to live while knowing death is approaching. (Norma N., 86 years old)

Leiomyosarcoma Advice

What words of encouragement/advice can you share with others who have leiomyosarcoma?

  • Keep the faith. (Ferilyn G., 32 years old)
  • Get a support group such as family, or find a support group. Talk to people, and keep up the fight. (James H., 38 years old)
  • Faith and hope, without it you’re dead already. (Vicki, 42 years old)
  • I have no encouragement. Advice would be to be seen at a major sarcoma center. (Kimberly N., 47 years old)
  • Believe, have faith, stay positive, control your mind to think good things, always know there are angels taking care of us, there are wonderful people willing to help. (AC, 50 years old)
  • One day at a time… (Genevieve, 56 years old)
  • Just be on top of your health, and don’t just listen to your doctor. Find a doctor who is up to date on Sarcoma. (April M., 57 years old)
  • Stay alive long enough for us to find a cure. (Jean, 58 years old)
  • Try to get a good sarcoma oncology center. Be positive and in the present. (Maria R., 59 years old)
  • Hang in there, we are stronger than this disease. (Marian B., 63 years old)
  • Together we are stronger and knowledge is power. It is key to also be your own best advocate. Join support groups with other sarcoma and LMS patients for support. (Mary Anne, 68 years old)
  • I am on Lartruvo, and my cancer has disappeared from two places, and has greatly reduced in my longs. (Judy, 72 years old)
  • Never give up, and NEVER STOP FIGHTING!!! (Norma N., 86 years old)

Leiomyosarcoma Diet and Exercise

What’s been your experience with diet and exercise?

  • I don’t eat sweets anymore. (Ferilyn G. 32 years old)
  • A huge struggle. (Vicki, 42 years old)
  • If I’m on chemo, which I am non-stop, then I eat what I can because most things taste disgusting. Another loss. (Kimberly N., 47 years old)
  • I haven’t had any dietary changes, doctor has allowed me to continue to eat normal, avoid junk food. (AC, 50 years old)
  • No problem exercising, trouble eating. (Genevieve, 56 years old)
  • I am doing chemo right now, and I am hungry and tired all the time. I have tried to put more greens into my diet- less processed food. (April M., 57 years old)
  • First three months after diagnosis I had no soy, wheat, sugar, corn or dairy. Now I just try to eat well, and do yoga. (Jean, 58 years old)
  • They are both important- difficult to manage. I need strength and encouragement. (Maria R., 59 years old)
  • It encourages me to exercise, diet has not been my way yet. (Marian B., 63 years old)
  • I stay away from foods with GMO’s Growth Hormones, and also try to eat organic when possible. There is a great program at the YMCAs with Livestrong that was helpful for me. (Mary Anne, 68 years old)
  • I have kept walking throughout the two years of treatment, now I am going to the gym. (Judy, 72 years old)
  • Eat anything you can keep down, even broth, anything is better than nothing. If you can walk from a chair to the bathroom, do it! (Norma N., 86 years old)

Leiomyosarcoma Treatments

What’s been your experience with treatments (medication, surgery, etc.)?

  • Painful. (Ferilyn G., 32 years old)
  • I am going the natural approach. I am using cannabis oil, essential oils, high dose vitamin c infusions, limiting sugars, esiac tea, supplements and vitamins. I had surgery to remove my prostate and bladder which left me with an ileostomy and a urostomy bag. I just two weeks ago had an ileostomy reversal. They wanted to do radiation and chemo, but I passed. (James H., 38 years old)
  • Complete negligence. An absolute nightmare. One medical mistake after another :(. (Vicki, 42 years old)
  • I would always choose surgery if it’s an option. Chemotherapy is heartbreaking when you suffer through all then side effects, but then you’re told that it didn’t work and even worse, it caused damage. (Kimberly N., 47 years old)
  • It took three biopsies to diagnose me, first cycle of chemo kept mass at 11cm, once FDA approved lartruvo, Doctor changed chemo to that drug and after three months, scans showed reduction to 7.5 cm. Currently completing another treatment with lartruvo. (AC, 50 years old)
  • Radiation therapy to my neck. I can’t swallow breads, pepper burns my mouth and causes blisters, I can’t eat spicy food. (Genevieve, 56 years old)
  • They found my cancer during a hysterectomy- mainly to remove fibroids. I started Chemo right away. The cancer had not spread to any place else on my body. (April M., 57 years old)
  • Surgery to remove seven tumors in October 2016. Nothing but Chinese medicine so far. The next scan is in two weeks. (Jean, 58 years old)
  • Surgery went well, but left positive margins on vena cava, so frequent check ups and uncertainty are a daily reality. 34 sessions of radiation “just in case” they help; I’m not on medication for this cancer, but many others for other conditions. (Maria R., 59 years old)
  • Two surgeries- it was hard to deal with and recover. (Marian B., 63 years old)
  • Wide variety of treatments have found for some time estrogen inhibitor pills did help with no new disease, but have also had SBRT and External Beam radiation and surgeries. I have not started chemo to date, although we have discussed it lately since I have new disease starting in new areas, and when I go to my next PET/CT we will decide the next steps. (Mary Anne, 68 years old)
  • Radiation wasn’t bad, chemo was horrible. None of the nausea medication worked. My sister said to try cannabis oil. I haven’t been sick since. (Judy, 72 years old)
  • I refused chemo since I had beat breast cancer twice, and another cancer once before the leiomyosarcoma, so my doctor and I felt radiation would allow me another six months with my family. As it turned out, I was only given three months. (Norma N., 86 years old)

Leiomyosarcoma Recommendations

Anything you’d recommend for someone with LMS cancer?

  • Have yourself check with your doctor. (Ferilyn G., 32 years old)
  • Learn as much as you can, and have a good support system. (James H., 38 years old)
  • Cannabis oil. (Vicki, 42 years old)
  • Stay positive. (AC, 50 years old)
  • Be positive- Everything you read is so negative- I could be scared all the time, but that is no way to live. (April M., 57 years old)
  • Find others to talk to with the disease, and find a good counselor. (Jean, 58 years old)
  • Go to a good center, be informed and be an active participant in your treatment, ultimately try to be positive and involved, though you need to come to term with the seriousness of this cancer. (Maria R., 59 years old)
  • Get a second opinion. (Marian B., 63 years old)
  • IT is KEY to be with a top Sarcoma Oncologist and team at a Sarcoma Center. (Mary Anne, 68 years old)
  • Lartruvo, it’s really working for me. (Judy, 72 years old)
  • Enjoy and cherish each moment, nothing is guaranteed. (Norma N., 86 years old)

Leiomyosarcoma Resources

What specific resources have you found most helpful?

  • Insurance. (Ferilyn G., 32 years old)
  • Cancer wellness centre offers massage and counseling. (Vicki, 42 years old)
  • LMSDR on Facebook. (Kimberly N., 47 years old)
  • Sarcoma online groups. (AC, 50 years old)
  • Mayo Jacksonville. (Jean, 58 years old)
  • My medical team at NYU, serious websites on the sarcoma and Facebook support groups. (Maria R., 59 years old)
  • The internet and my cancer center. (Marian B., 63 years old)
  • Support groups are key for me. I actually created a Facebook group. (Mary Anne, 68 years old)
  • The internet is an amazing resource. (Norma N., 86 years old)

Leiomyosarcoma Stories

Share an experience you’ve had related to living with leiomyosarcoma.

  • Life after a diagnosis of LMS is different. I had a rough time at the beginning with depression, but I battled through with the help of my awesome family. (James H., 38 years old)
  • I had a 15-hour surgery, and lost the feeling in my foot from surgery permanently (dissected sciatic nerve). Worst experience of my life. (Vicki, 42 years old)
  • I’ve learned that I am teaching the doctors that treat me. (Kimberly N., 47 years old)
  • Learned how much people care to help. (AC, 50 years old)
  • I cried for the first three months, and then finally picked myself up off the floor, and went back to work. Now I am living with cancer, not dying from it. (Jean, 58 years old)
  • I had a craniotomy in 2014 for a huge meningioma, which was successful, but that required a long recovery time. Also for a couple of epileptic seizures immediately after the surgery; so when 15 months later an MRI revealed the sarcoma mass on the vena cava, it was a huge surprise. I was lucky to have a good medical team who followed me, surgery was great, but left positive margins. I tried to get all the information I could on the leiomyosarcoma. It is important for me to know as much as I can so that I can be prepared, and be a positive protagonist in my own treatment. I wanted to have radiation in case radiation could help to prevent its return. It was a very strong experience. Besides fatigue, I did not have secondary effects. What I come to term now is the constant fear that it may come back, reading all the statistics and studies concerning this cancer, I am convinced that it will come back. This conviction is deeply embedded in me. I dream about it. What I am trying to do is be deeply focused on the present, and give of myself to others, so that whatever time I am have left it is well spent. The constant fear or thought of an ever present cancer growing in me helps me to live life fuller. (Maria R., 59 years old)
  • I found the support of my community and husband very inspiring. (Marian B., 63 years old)
  • I am fortunate to be at Dana-Farber Cancer Institute in Boston, MA USA where I have met many wonderful warriors and survivors who continue to inspire me, and encourage me to stay hopeful. I also wrote a blog for the Dana-Farber Insight page. (Mary Anne, 68 years old)

Leiomyosarcoma Interview Transcription

What Causes Leiomyosarcoma (LMS Cancer)?

My oncologist’s feeling is that it’s just genetic- My mother’s side of the family is very healthy, but my father’s side of the family is very unhealthy. And my father passed away from colon cancer in his late 30s- his parents both died from different types of cancer- my oncologist felt it was genetic- however in some research I’ve done online- some of the holistic community feel that pesticides may have a contributing factor. And I do live right next to a commercial nursery, so that may have had a factor too. So in my case, maybe both genetic and environmental factors.

(paraphrased from Julia’s interview)

Leiomyosarcoma Symptoms & Treatments

For me, I just felt a mass in my lower right abdomen, I didn’t have any pain. I think it might be unusual to not have any pain. I think most people with LMS, especially uterine LMS have some pain with it. Mine was an abdominal mass I felt. So I guess you would feel it physically, and some patients have pain with it.

As far as treatment- LMS is very resistant to the treatments out there- it’s resistant to chemotherapy. I think another reason to go to a sarcoma center where you have oncologists who have treated more LMS patients- there are certain cocktails of chemotherapy drugs that they use together to target LMS that has better results. Some LMS patients will have great luck with one chemotherapy cocktail and another patent won’t- so a lot of it depends on your body chemistry too. Some drugs will work better for some patients. There was an oral chemotherapy drug I was taking for a while- I didn’t have much luck with it, but other LMS patients have been on it for years with a lot of success, so it depends.

Some of the holistic things I’ve tried- I think it’s important to eat less processed foods if we can. Organic- you know there’s a list of the dirty dozen foods online- of foods that definitely you should buy organic, such as strawberries, celery, apples and then there’s other produce that isn’t as important to buy organic. But doing that would depend on availability where you live. If you’re able to have an organic garden to help feed your body with good, organic food that’d be great.

I think it’s good to avoid processed food and foods with sugar. Natural sugar from fruits I think is fine- but anything with added sugar is not so good. There are sugar alternatives you can find- there’s a stevia plant that’s called a sugar plant- you can grow it in your garden and dry the leaves and use that as a sugar substitute. I use a little bit of honey sometimes. Just try to stay away from processed foods and try to eat organic as much as you can. Also, when you have a cancer diagnosis you’ll have a lot of people who will want to give you things or tell you about a certain treatment- you know- so and so had cancer and this cured it- there are so many things that you could be taking, so I think it’s important to listen to what the Spirit is telling you, or what your intuition is telling you, and just do what feels right for you. You’ll find a combination- whether it’s what the oncologist or what the holistic community is telling you- find a good balance and do what feels right for you.

When I was first diagnosed and had my surgery, we didn’t know it was leiomyosarcoma. I had the surgery first and then I saw an oncologist at UCLA- a surgeon and he said the best way to do it if you think a patient has leiomyosarcoma from a CT scan- try to do a biopsy first, because they prefer to do chemotherapy first and then surgery. So I think you have better survivability if it’s done that way- but it’s not the end of the world if not- I didn’t have it done that way. I think ideally this oncologist recommends chemotherapy first and then surgery, which is kind of hard as a patient, because if you have it in your body you just want to get it out of there, but from his experience (which is a lot of experience with LMS patients) it’s best to have a biopsy for the diagnosis, then chemotherapy, then the surgery.

LMS is a little different from other cancers because it doesn’t travel through lymph nodes, it travels through the blood, so if left untreated you would just have spots that pop up in different sites of your body. I’ve had metastases to my my liver and also different bones in my body. Right now I’m taking a drug called Xgeva which is also prescribed for people who have osteoporosis, it strengthens the bone, and so I get an injection of that once a month.

When I knew the cancer was in my bone I was a bit concerned with that- you know- does that mean I’m going to start breaking my bones? He said no, usually what happens is you start feeling pains in those sites and there’s pain medication to treat that. I recently got a magazine from UCLA that was about using radiation to treat pain, when you have metastases to the bone- they can use radiation now to treat the pain.

(paraphrased from Julia’s interview)

LMS Cancer Life Expectancy and Prognosis

Pain management would evolve into palliative care and then that would move into hospice care.. My father passed away in the mid 70s from colon cancer so his experience with pain and cancer was so much more difficult than it is now- even with palliative and end of life care- I think patients are much more comfortable now then they were back then.

I think probably most LMS patients- their survivability is 3-10 years maybe. I think it’s an exception for someone to survive beyond that with LMS- it’s not really a curable cancer right now. But so much depends on your body- I’ve talked to some LMS patients who were diagnosed 20 years ago and they’re still doing fine- it’s not curable right now- other cancers are curable- you don’t really go into remission with LMS. I think you just learn to live with it.

You know, how your body reacts to different treatment is different for every patient. I know years ago malnutrition was a factor in people passing away, but I don’t know if that’s really the reason these days.

What do you feel like people who have survived a long time have done differently?

I kind of feel like it’s more luck of the draw, but I do know for sure that those people have done their best to maintain a positive outlook, and to never stop looking for options, even if your oncologist feels that he’s done all that he can for you- try to find another oncology team that will help you with more treatment.

A positive attitude is everything. Having faith or hope in the future. I think it’s also important to try not to be so stressed about it- try to find ways to be relaxed and calm. Other than that I do think it’s kind of luck of the draw. Those patients I’ve talked to that have lived with LMS for a long time are very positive, hopeful people.

(paraphrased from Julia’s interview)