Leiomyosarcoma

G-MaKamama said:

I was found to have
I was found to have leiomyosarcoma july 2011 after a hysterectomy. I was told there is no treatment for what I have, only monitoring of it thru CT Scans. My surgery did not allow for clear margins to be left which I am told is very important with this. I am now told last week that I have tumors on my adrenal gland, spots on my liver, and the large lump on my shoulder makes it stage 4. What that means I have no idea as I am told there is nothing can be done. I hurt, am extremely tired, and just plain feel like crap. But I have to keep trying to work and keep on living best I can. I have good days, I have bad days. I am receiving nothing to help or change anything.

Hi, I just read your post, did your Dr. recommend Radiation or Chemo. 

Mona

I had a hysterectomy in January 201and had  a 5 pound fibroid that had my cervix dilated 5 cm. of course i was told there was no need to worry. Well  during my postoperative visit I was told it was positive for LMS. I just completed chemo and radiation as a "preventative" measure. Now it seems like every muscle and joint in my body hurts and I Am scared to death. I have no health insurance so I am in the charity health care system and am afraid they will not be as aggressive in treatment as I have read this disease can be. Any concerns the pain could be related to LMS?  Help!

wahine56 said:

LMS

I was diagnosed Sept2011 after a hysterectomy for fibroids. I am stage IV with tumors on my back, in my liver, and in my lungs. Have gone thru radiation on my back, two different chemos, one of which worked to control for a few months. Now am taking new drug called Votrient and it has kept tumors stagnant for over six months.  No one knows how long this will last.  This is a very scary cancer, and no one knows much, other than there is no cure.  Look for a GOOD cancer center that specializes in sarcomas. Good luck to you. 

 

Bless your heart! I was just diognosed with LMS in my uterus. I am supposed to have full hysterectomy plus take out my cervix and lymph nodes. Having another cat scan on MOnday to see if it has spread to my lungs and liver. It is very scary!! I was told that this type of cancer does not respond well to chemo or radiation. But I see you are takiing it. How old are you? I am 56. Best of everything to you too! I pray for you to be cancer free~

I had a fibroid removed.  The pathology report showed that it was a Leiomyo Sarcoma.  I went in a week later for a total hysterectomy.  I have been clear since then - 9/2008.  I'm almost at 5 years.  I read a book called "Forks Over Knives" and heard that vegan diet helps with cancer.  Everything I read says to be sure you go to a Sarcoma Oncologist.  I went to a Gynecological Oncologist.  I am glad I had a total hysterectomy, because it gives me a little more peace of mind.

Oneinabillion said:

leiomyosarcoma

My first discussion board and figures it would be something like this.  My name is based on I had a LMS which was in my renal vein removed around the middle of 2012 and being a man from what I found as of 2009 there were only 10 know cases.  Hence the name.  I am so in the dark, believe it or not, I don't even know what stage it was.  Supposedly it was caught on the early side but was the size of a large orange so I don't know if it was that early.  My kidney was also removed for.  Unfournuetly the Path report did not show a clear margin.  Have a scan coming up later in the week. Up till now scans have been negative but as I get closer to the scan date getting more worried.  The odds are not in my favor but hey, it's so rare I can change the odds for the next guy.  I was allergic to one of the chemo drugs but none other have been tried.  I was wondering if anyone knows anything about proton radiation in realtionship to LMS.  Thanks and good luck to everyone.  We all can use some. 

Hey oneina billion- love your attitude! I was operated on in June 2012 for leiomio in my left side. Lost ovary, kidney and 1/3 my colon. Tumor was huge about size of a basket ball. Never knew I had it until I began to lose weight. I should note I had regular annual physicals but they never caught it. They tell me I am rare also. I praise God  for his healing and my Doctor's knowledge. He was a wonder.  I love Emory! Had radiation treatments only as I was told chemo does not work with this. Discussed proton but they said it would not work for me. So far I am clear. I do have nerve damage to my legs but I am back at work and dealing with God's help.  You may change the odds for the next guy. They know so little of sarcoma that there are no applicable odds. Have hope, do not give up for more than 2 days Know you are loved and there is some reason for the pain you have been through. God will explain it all to you one day. Ask lots of questions of your doctors. I think you need a sarcoma doctor specifically. They did catch it early so things are looking good so far. I know of a woman free from sarcoma for 23 years. Now that's a story!

Oneinabillion said:

leiomyosarcoma

My first discussion board and figures it would be something like this.  My name is based on I had a LMS which was in my renal vein removed around the middle of 2012 and being a man from what I found as of 2009 there were only 10 know cases.  Hence the name.  I am so in the dark, believe it or not, I don't even know what stage it was.  Supposedly it was caught on the early side but was the size of a large orange so I don't know if it was that early.  My kidney was also removed for.  Unfournuetly the Path report did not show a clear margin.  Have a scan coming up later in the week. Up till now scans have been negative but as I get closer to the scan date getting more worried.  The odds are not in my favor but hey, it's so rare I can change the odds for the next guy.  I was allergic to one of the chemo drugs but none other have been tried.  I was wondering if anyone knows anything about proton radiation in realtionship to LMS.  Thanks and good luck to everyone.  We all can use some. 

The only thing I know for sure is you MUST see a sarcoma specialist!!!  

wahine56 said:

LMS

I was diagnosed Sept2011 after a hysterectomy for fibroids. I am stage IV with tumors on my back, in my liver, and in my lungs. Have gone thru radiation on my back, two different chemos, one of which worked to control for a few months. Now am taking new drug called Votrient and it has kept tumors stagnant for over six months.  No one knows how long this will last.  This is a very scary cancer, and no one knows much, other than there is no cure.  Look for a GOOD cancer center that specializes in sarcomas. Good luck to you. 

 

How are you doing on the drug, I start taking it today. I have tumors on my lungs, and one just pop up in my right leg that was removed. I had a pet scan this past Monday waiting for results to see if it's any-where else.

moe1131 said:

Leiomyosarcoma

I have stage four Leiomysarcoma all that means is it started in one area and has spread to another. It started in my left thigh and I had surgery to remove the tumor it was extensive leg surgery. It then showed up in my left lung which can-not be operated on due to being in the hilar area. I had two rounds of chemo for my lungs and one round of radiation which shrunk the tumor to about half the size now, and things in my lung are stable. Recently I had a small tumor pop up in my right leg small and had it removed. The FDA just approved a drug in April of 2012 called Votrient which was delveloped for Kidney sarcomas ,but they found out it works on other sarcoma,s I'm going to start taking the drug this week. I would get a second opinion on treatment and research the drug.

I believe there is always something that can be done cancer is a on going battle with many set backs and every day new developments are being made. I went to Sloan Kettering for a second opinion and have been fighting this for two years now.

 

Hello Moe 1131,

I will pray that you continue to fight until a cure is found for this horrible cancer.  I also had a large LMS tumor removed from my left thigh in October, after going through two rounds of chemo (AIM) then radiation and two more rounds of chemo.  I just finished what was supposed to be my last round of chemo in March and went in for my MRI and CT scans with hopes of getting the "all clear" from my docs.  I did get the great news that there's no detection of recurrence in my thigh, but they did find two spots - one in each lung.  I'm now waiting for authorization from my insurance company for  PET Scan and biopsy.  Did you get chemo for your thigh? If so, did they use the same chemo for your lungs.  Also, what kind of side affects have you had from the votrient and do you have to take it daily?  I'm praying for us all!  So frustrating!

I do not have leiomyosarcoma. I am the caregiver of someone who does. All cancers are scarey but this one is horrifying. She had surgery in November for what the doctor thought was just a fibroid mass. I do not even know if there were clear margins or not. The doctor was very surprised to find leiomyosarcoma. She had five rounds of chemo which I didn't understand because everything I've read says it isn't effective in treatment of this cancer. The chemo made her very ill and almost shut down her kidneys. doctor stopped the chemo and started her on some pills. No scan again till August. She is still very tired and weak. Is this normal. She can't walk across room without being out of breath.

Oneinabillion said:

leiomyosarcoma

My first discussion board and figures it would be something like this.  My name is based on I had a LMS which was in my renal vein removed around the middle of 2012 and being a man from what I found as of 2009 there were only 10 know cases.  Hence the name.  I am so in the dark, believe it or not, I don't even know what stage it was.  Supposedly it was caught on the early side but was the size of a large orange so I don't know if it was that early.  My kidney was also removed for.  Unfournuetly the Path report did not show a clear margin.  Have a scan coming up later in the week. Up till now scans have been negative but as I get closer to the scan date getting more worried.  The odds are not in my favor but hey, it's so rare I can change the odds for the next guy.  I was allergic to one of the chemo drugs but none other have been tried.  I was wondering if anyone knows anything about proton radiation in realtionship to LMS.  Thanks and good luck to everyone.  We all can use some. 

Hi Oneinabillion,

I had to chuckle when you stated that this was your first message board and it figures that it would be something like this.  That is exactly the type of comment that I would say!  My husband was just diagnosed with LMS (about two weeks ago) with a tumor on his liver.  They believe that it is the primary (as they can find no other tumors, although there is a tiny spot on his lung that they believe is a cyst; it's too small to biopsy right now).  He is not the type to do research and he barely wants to talk about this, so I've been gathering as much information as I can for this rare cancer.  He had the tumor removed Duke and will be going to MD Anderson for a second opinion.  So far, we have been told that there may be a possibility of radiation or chemo because the margins were so close during the surgery.  He's meeting with Duke's sarcoma specialist first, then we are off to MD Anderson.

How was your last scan and how are you doing?  Did you ever decide to go with the proton radiation?  If so how did that work for you?  Thanks so much for your help!  I'm really trying to hold it together for both him and I.