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Leiomyosarcoma
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Sep 20, 2012 - 2:11 pm
Looking for people that have beat this rare cancer and what worked for treament etc. My sister is 30yrs old and had surgery to remove a large mass on her right ovary thinking it was ovarian cancer sarcoma. Pathology came back yesterday and it is leiomyosarcoma. She was able to keep her left ovary and uterus which seems odd to me but maybe because of her age etc. Just seems the uterus would be a recuurence spot? Please help and pray! We go to meet with doctors tomorrow for her treatment plan and unanswered questions we have. Thanks! |
Joined: Oct 2012
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.
Joined: Dec 2012
Hi, I just read your post, did your Dr. recommend Radiation or Chemo.
Mona
Joined: Jan 2013
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.
Joined: Jan 2013
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~
Joined: Apr 2013
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.
Joined: Mar 2013
G-Makamama, I have been told the same thing, I am going thru ct scans. At least you are young I am not. I am told it is in the abnormal. And thru the grace of God those tumors are going to disappear.. The doctor gave me the pill called "anastrozole" one every day. I cannot tell if is helping. But I think it is cause the CT in October came out clear. And I was told that there was no cancer. But the CT in January is showing some thing. Now my CT is like every two months. I am concern that I am having two many CT. Cause I am 79 year old. If there is any one out there that is as old as me let me know. Why haven't the doctor given you chemotherapy. I know of some people that have sarcoma and they have received chemo. And they are doing fine but they do have to have a CT every three months.
Read Ps. 103:2-5 and have faith. (excuse my spelling)
Joined: Apr 2013
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.
Joined: Nov 2012
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!
Joined: Jan 2013
I had a hysterectomy in January 201anti remove a 5 pound fibroid that head my cervix dilated 5 cm. of course u was told there was no need to worry. Welmy 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 Ann scared to death. I have no health insurance so I am in the charity health care system a d 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!
Joined: Jan 2013
Prayers for you! I was just diognosed 2 weeks ago with LMS in my uterus. It is very scary. Going to have surgery very soon. Where is your located? Mine is in the uterus. Having another cat scan on Monday to see if it has spread to my lungs and liver. ugh. It is awful. Praying for you.
Joined: Jan 2013
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!
Joined: Feb 2013
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.
Joined: Feb 2013
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.