Hi, I was diagnosed Dec.1,1999 with uterine leiomyosarcoma.The cancer had mestasized to my spine and my lungs. If anyone has this and would like to talk please let me know how to get in touch..Take care and God Bless!
MY NAME IS RENEE AND I LIVE IN FLORIDA. ON DEC.30,1997 I HAD A 15# TUMOR REMOVED FROM MY ABDOMEN IN JANUARY 1998 I WAS DIAGNOSED WITH A LEIOMYOSRCOMA. I WENT THROUGH CHEMO AND RADIATION AND HAVE BEEN CANCER FREE FOR 2 1/2 YEARS. THE CANCER RETURNED IN MY LUNGS AND I JUST RECENTLY HAD AN OPERATION TO REMOVE THE LEISIONS FROM THE RIGHT SIDE OF MY LUNG AND I AM GOING TO HAVE ANOTHER ONE SOON TO REMOVE THE LEISIONS FROM THE LEFT SIDE. I HOPE THIS HELPS YOU
Greetings Renee: I live in Alaska & was diagnosed with leimyosarcoma in May,2001.The surgery was successful as future CT's and MRI are clear.I chose not to do chemo/radiation and now doing alternative medicine.Do you use alternative medicine as well? What type and kind. Thanks. I'll keep you in my prayers.
My 24 year old daughter in law was diagnosed last month with LMS, today found out it is stage 3. She will begin chemo next week for 8 months. What kind of alternative medicine did you and are you using. Have you ever had chemo? If so, what kind of chemo did you have? Did they remove your uterus when you were diagnosed? What stage were you in? Thanks, sorry about so many questions. The family is looking for help, encouragement and a miracle from God.
she was diagnosed in Feb of 2011 with Leiomyosarcoma. it was in her forehead. What we thought was a simple cyst was the Leiomyosarcoma.
She has had all the tests, now we are waiting for the results... waiting is killing me..
How is your daughter in law?- she is the first one I have read that is around the same as my daughter...
How are you doing ? I have been diagnosed with leiomyosarcoma in nov,08. The cancer is back, did the alternative medicine work.
Let me know,
Renee--What are your chances? Sorry that is abrupt, but my mom had this four years ago and has just been found again. She's only 48. The chemo gave you 2 1/2 more years free of it? Are the surgerys going to be helpful or harmful?
dear renee - how are you doing now? also, how old were you when this all started? my mom was recently diagnosed and i'm a complete wreck. my mom lives in northern florida. would you be willing to talk with her if she calls you? she could use some encouraging.
Hi I was 28 when i was diagnosed. I am doing fine now. I work at Publix full-time. In the past 2 years I have had 5 lung surgeries due nto the cancer. I am a survivor. I can help your mom send me her number and I will contact her.
Hi, again! I am so glad to find in your recent message that you are doing so well. I now feel some tightening in my chest when I breath because there are two 2-3 cm leisions in my right lung and 3 smaller ones in my left lung. One of my bigger lung masses is unoperable, so I guess I have to have chemo. But according to what the oncologist said, there isn't any sure result. My family and I are very depressed. Hope you and anybody else who has the same experience can help me by giving me some advice. Are you having any other treatment now?
I was diagnosed with uterine leiomyosarcoma in 1999 and underwent a complete hysterectomy. I didn't have any other treatment following the surgery. Just two months ago, some masses were found in my lungs --recurrence. The oncologist wanted me to go through chemo. I have to make the decision in about 10 days. Would you please tell me what kind of chemo therapy did you undergo? Were the side effects very bad? I admire your courage dealing with this problem!
Hope for the best
How did you fare with the radiation.. My husband had a 16 cm tumor that started at the IVC and extended into the retroperitoneal. He is on Gemstar /Taxotere presently for 6 cycles, then radiaton is scheduled for Feb.
Were your margins clean?
Hope you are doing well.
Hi Renee and all of you who have this insidious disease. I live in New zealand. I was diagnosed in October 2007 after a tumour in my jujenum, small bowel, burst leading to emergency surgery and the finding of the leiomyosarcoma. I was lucky in a way that the tumour could only get to a certain size before it caused problems, however 6monthly ct scans followed and recurrences have occurred both times since then. In May I am to have my third laparotomy and also a second hernia repair done. result of abdominal wall weakness, common after surgery. I have been told there is no spread it is still localised. The problem I have is that my surgeon, who is fantastic, has said that surgery is the only option for me and yet I see so many of you are having chemO and radiation offered and other drugs mentioned as well.
aRE WE BEHIND THE TIMES HERE? I have been told it is unresponsive to both radiation and chemo.
Good luck to all of you out there.
My name is shelia I was diagnosed in july 2007. I wonder if u could tell me what ur symtoms where. I have recently began to feel sick again and am going to Duke unv latter this month to get pet cts to see if the cancer is back. I never recieved ne kind of treatment before and that is my biggest fear is the surgery and the treatment surgery was so hard to recover from two years ago and when i thought things where getting better i begam to feel ill again. wondering if ne one has ne input on symptoms and what to expect if i have a reoccurance . My prayers are with all of u God bless and heal u .
You can find lots of info there...
I was diagnosed in August, 2001. I am being treated with dioxal for a chemo drug once every three weeks for three treatments with radiation to the pelvic area to follow. Has your treatment been similiar and has it been successful?
Selena:Hope my message finds you well.Do you know if the natural progression of the disease is to lungs and spine after the uterus? I have chosen alternative medicine, Dr. Burzynski treatment, and special diet? Are you doing something similar? Why did you chose the particular treatment? God Bless & I will keep you in my prayers. Sandra
Hi, I was diagnosed with Leiomyosarcoma in August of 1999. It was found in my colon. At the time, doctors thought they had it all. I had a recurrence in November of 2001 in my abdomen. I went through 2 chemo treatments which did not work. I had drastic surgery to remove the tumor. It has not mestasized. I am currently undergoing a clinical trial using Gleevec.
mavill, how is the Gleevic working for you? I have been on it now for almost two years and my tumors have not returned. Will you keep taking it after the trial period is over. I would like to get off of it for a while and see what happens.
Hi! Glad to hear Gleevic has worked well for you and Mavill! Could you give me some details of this kind therapy? My uterine leiomyosarcoma has come back to my lungs. The oncologist suggests chemo. I am very scared and desperate. I will greatly appreciate your timely response.
hi, selena. my mom is dealing with leiomyosarcoma that also originated in her uterus. how are you doing now? also, how old were you when this all started? i'm so afraid that i'm going to lose my mom.
I was diagnosed with Leiomyosarcoma in Nov 2002. I had surgery to remove a large tumor attached to my uterus and a complete hysterectomy (I was almost 45 at the time). I did a course of six weeks of radiation therapy to the pelvis in Feb and Mar of 2003. In early Nov 2003 I again began experiencing the same symptoms as the year before (bloating, pain). A CT scan revealed a tumor nestled next to my small intestine. A week later, another surgery, same incision as before. Exploratory showed that the tumor was not attached to my small intestine (no resection required), but there were some suspicious spots in the omentum and a huge tumor wrapped around my appendix. The omentum and appendix were removed, as well as the tumor next to my intestine. I am about to begin chemo. We have not planned the specifics yet, but at nearly 46, I am otherwise very healthy and far from throwing in the towel. There is a lot of positive energy and fight in me.
Hello homeschoolmom...Hope you will see this post.We are the same age. I was diagnosed in November 2001 - one year earlier than your diagnosis. My Leiomyosarcoma has primarily attacked my digestive system. I just joined and would love to discuss things with you. I have had several types of chemo and surgeries and have just started a Phase I Trial.
Hello Greyhound---just saw your message. my wife was diagnosed oct 5th, 04 .with LM Sarcoma of the retroperitonial cavity at about 6.9cm. She was put on a protocal at MD Anderson with Dr. Benjamin--Chairman Sarcoma. She has had two rounds of massive doses of chemo including Isofex ? and Adriomyacin ? along with Nulasta and Aranesp,(could be spelling these all wrong). The plan was to exceed the normal doses mitigated by the beneficial effects of Nulasta and Aranesp, in hopes that it would deliver a staggering blow to the tumor. Alas, after two months of therapy we found out yesterday that the tumor has actually grown. Now the plan is to switch to Gemzar and Taxotere-to see if that works. Since you have had many chemos, just wondering how you are doing and if you have any experience with these regimens. We are at least happy to find her tumor is still the only one she has and no evidence of metastisis. Any comments would be appreciated. Hope you are doing well. ---GB Houston
My husband had a 16 cm LMS tumor that started at the IVC and extended into the retroperitoneal. He is on Gemstar /Taxotere presently for 6 cycles.
He couldn't have your treatment as his right kidney was removed during surgery; as your regimen is hard on the kidneys the doc was concerned with his having only one kidney.
G/T is suppose to be much less harsh. Joe has tolerated it pretty well. There is literature to indicate it is suppose to also be as effective as the A/I, etc regimen.
Was your wife's tumor attached to anything? Were the margins clean?
I was diagnosed with myxoid LMS in March, which resulted in a radical hysterectomy. I have just finished 30 radiation treatments to my pelvic area. My gyn oncologist said there is no chemo which works with this type of LMS and the radiation was done in hopes of preventing a recurrance. It looks like I'm starting out the same as homeschoolmom...I am 50. I just had my 4 month follow up visit and asked if there would be CT scans done and he said no, unless I have symtoms. Unless they can remove the cancer there is no treatment. Homeschoolmom, how was your chemo treatment? What kind of chemo was used?
I have also had swelling in my thighs from the removal of lymph nodes and fluid buildup. My gyn oncologist said this is not lymphadema and the problem was aggravated by the radiation. I am going to a therapist trained in manual lymph drainage, which does help temporarily with the aching in my thighs. Has anyone had problems with this? Any suggestions?
I thank God daily that I have a strong relationship with him. I have had complete peace throughout all of this and know this is all a part of His plan. I told someone at work I sure was glad I knew about Paul's thorns, so I would know how to respond!
hi, my name is mario and live in Australia.
My wife was diagnosed with Lms.in 2004 so far she has been treated with Dexo.and texo.Mary has alump on her liver 14cm.in diamiter Dexo. help reduce the size to 4cm but now it is back to 14cm.so far Mary has had 6 shots of texo.and will have a ct scan next week, hoping for a sign of improvnemt, so more treatment will be given. Well at least she has not expierienced no pain and doing much better than what the doctors predicted. when diagnosed Mary was given 3 months to live 5 years down the track she is still going strong.
I would like to ask .Does any one know of any other treatment beeing used
if so please tell me
Thanks for all your support
Keep praying it all helps
My brother in law was dx with Leiomyosarcoma 18 months ago. He has been to Germany for laser metastectomy and has increase in size and number of tumors in his left lung. We are currently investigating a trial of cytoxan and everolimus which works on stopping blood flow to the tumors(antiangiogenesis). We had his tumors profiled to see what they might be receptive to as far as treatment. There are two companies that do this treatment that I have experience with. One is TMD(targeted molecular diagnostics) and Clarient. We are utilizing this information to start therapies. Also, metronomic chemotherapy which is low dose chemo is another avenue.
I was dig, in july 2007 ulms after surgery n june 2007. I ran across this site while researching more.looking at the dates i wonderd if there would be ne recent inquires, How is ur brother? I have done well untill recently. I am on my way to duke onc to see if the cancer has reoccured. would love to chat with any one who is experiencing lms or has a loved one enduring this feel free to contact me via E mail firstname.lastname@example.org
place Hi i was diagnosed with ulms when i was 28 and i am now 30 it all started while i was pregnant they found something growing in me and no one figured out it was cancer until 6 months after the baby the drs did not do there follow ups like they were supposed to so when they did find it i was at stage4 and it mets to my lung i did do some chemo but never got to finish treatment and i did have a lung resection which they found that the chemo killed the cells after two rounds of chemo, it is now in my other lung and maybe in my spine!!! wheres the best hospitals to be at and is there any new treatments anyone experienceing ulms plz email me email@example.com
i would try md anderson in houston - they have a sarcoma center - suppose to be one of the best
I was diagnosed with leiomyosarcoma on November 19, 2008. I, too, heard Houston has an excellent sarcoma center. So does University of Michigan. I was treated for uterine leiomyosarcoma at Cleveland Clinic. I did go to UofM for a second opinion. They agreed with the chemo CC was doing but suggested radiation. CC did not think I needed radiation so I went to University Hospitals of Cleveland as my friend had recently had uterine cancer and had brachytherapy. So I had bracytherapy at UH. I was only able to complete half of the recommended six rounds of chemo and felt I needed to do something more.
My CC doctor consulted John Hopkins through the Internet a few times. I was surprised at that. Leiomyosarcome is rather rare and there are no studies or statistics on it.
May I suggest that you eliminate dairy from your diet as it encourages rapid cell growth. I am drinking Rice Dream organic rice milk. It isn't bad on cereal. Also, eat as little meat as possible and fill up on fruits, vegetables, whole grains, and legumes. I bought a book written by a doctor and nutritionist called "The Cancer Survivor's Guide." It explains why you should eat this way and has recipes. www.bookpubco.com or 800-695-2241. It's $19.95 plus shipping. CC has a great support program and I learned that they give this book out if you ask for it. It's worth a try to complement the recommended therapies.
My prayers and best wishes go out to you.
My doctor consulted Sloan Kettering on the web--not John Hopkins as I posted yesterday.
This page is very informative.
my girlfriend was diagnosed with uterine lms it has metast to her lungs and she has a mass on her pubic bone which it fractured it seems to be very advanced she also has a lot of bleeding they tell us surgery is not an option and chemo may buy us a bit more time is all we have changed her diet and if anyone has any helpful hints it would be greatly appreciated thank you and god bless
My wife is presently in the same situation. This all started in January of 2008 when her gyno doc told her that she had an enlarged uterus. He told her that surgery was optional. It got so bad by June of 2008 that they decided to do a complete hystorectomy. After surgery we were told that there was some dead tissue, however not to worry because they were 99.9% sure that it was fine. He told us 4 days later that she had ULMS.
They were going to start pelvic radiation when they discovered in a CT scan that it was in her lungs and lymph nodes in her pelvic area. They put her on Chemo (Gemzar and Taxotere) till april of 2009. They gave us the news that they were pulling her off because there were no more signs of it. She had several side effects from the chemo and gutted her way through it.
In July of 2009, she passed out at a wedding before the bride and groom came out. She was transported to the hospital with a diagnosis of (drank too much). Note: She was not even drinking! After 5 hours of fighting with doctors, they finally discovered through a CT scan that she had a brain tumor that started bleeding. It was in the cerebelum and about the size of an egg! They removed it and she spent 27 days in the hospital learning to read and write again. She made a miracle recovery and had good scans until yesterday.
She had to go back in because she had a lot of discomfort in her vulvar area. For weeks they were saying that it was very common symptomatic for post hystorectomy. Last week during examination, they felt a tumor under her skin in the vulvar area. The scans showed a massive growth growing under and around her pelvic bone.
She is presently going to have more scans of her brain and lungs to see if it is re-occuring in those areas. It does not sound like they can operate because of the location of the tumor. I am not sure what they will decide this week, however it is not good!
From my heart, I continue to pray, however I know this is not good! We will continue to live our lives today. She and I will get through our day together!
God Bless all of you that have to go through this horrible disease!
On Dec 1, 2009, during a hysterectomy due to uterine fibroids. they removed the uterus, ovaries, and fallopian tubes. The LMS had become so large that it infected the right ovary and fallopian tube. The fallopian tube had even become attached to the bowel. After surgery, the did a CT and coudl not find any other signs of LMS in any other organs. however, they are now recommending chemotherapy using a combination of gemzar and taxotere. I am trying to do some research, however, most of what I have found is pretty grim. Survival rate seems low and there does not seem to be much evidence of chemotherapy extending survival rate or lowering reoccurance. I noticed there had only been one posting in 2009. Is this sight still active? Those of you who posted in 2005 - what about your prognosis since 2005?
the other lms a few lines below this gruoping has lms info provided by sharon - a site to join etc - it has lots of info
see "sarcoma" survivors
mda in houston is a good sarcoma center
i am in my 6th round of gem + tax for lms dig 8/09
How are you doing with the treatment. What side affects did you incurr. I will be starting gem + tax next Week. I have mets to lungs and liver and few other spots. Trying to stay positive.
i have been lucky doing well w/the treatment. I have not been sick at all but they give me several anti nausea medicines before they start the chemo. i do get constipated - take stool softners at the start of the chemo then it goes away. I did have some swelling & weight gain from the steroids but that has gone away too. I am working a full week & tired at nite then about 48 hrs after the chemo i'm really tired for about 24 hrs so i get chemo on thursdays. my chemo is 90 min gem 1 week then 90 min gem & 60 min tax & a shot the next week then the next week i'm off so about a 2 week break. I have completed 6 rounds & start another one this week. I had a port put in to make it easier. how many minutes are you getting etc of this chemo?
cpritch227- I was diagnosed with Stage IV Leiomyosarcoma of the uterus. Prognosis at the time was a 20% chance to live another 3 weeks to 5 years. This May will be five years.
The first round of chemo was the gemzar/taxotere, as was the second. Right now I am on Doxil and the last scan was clean. So chemo does indeed help as well as the right surgeon.
When I first read everything I could get my hands on I also thought "Grim". It isn't. The quality of life may not be the same, but hope, love and faith will pull you through.
I'm so glad, it gives me hope. I too have leiomyosarcoma. I was diagnosed nov. 08, did chemo and radiation and the cancer is now back in my lungs. Will try chemo again.
Love, to hear from you since you are doing so well. Is Doxil a new chemo drug ?
Love to hear from you.
Hi my brother was diagnosed with leiomyosarcoma a very large tumour 20cms in diameter, he had surgery in May 2009, removal of the tumour, bladder and small part of bowel followed by 6 weeks of intense radiotheraphy.We thought things seemed clear but A few weeks after the treatment finished he became very ill, blockage of bowel, he began vomiting and dramatic weight loss over 3 months it took that long to decided what was going on!. 3 weeks ago he underwent surgery again to repair the blockage and callopse of bowel. Sadly since then he has been going backwards and not recovering well, still problems with eating keeping food down. They have now said that his intestines do not appear to working, they think due to damage from radiotheraphy. They hope if he regains strength and can get him eating again its possible this may improve.. anyone got any advice we can give to help? we also have the added problem of while he was in having tests small cells have now appeared on his lungs. I get the impression surgery or chemo is not going to be an option for him now. I just want to try and make it easier by relieveing any pain we can due to the radioation after effects. any advice? regards Lorrain
hey artiste01, not sure if Doxil is doxorubicin. If it is then it had been around for a while. That's the chemo I was on for Uterine LMS.
hi, I was reading about your Doxil treatment has it been effective? I was on Gem/tax for 5 months, then an experimental drug, now i'm back to the chemo. Hopefully this will have less side effects than taxotiere. I was diagnosed with LMS found in the uterous after a suprapubic hysterectomy during which the uterous is mulched up and vacumed out and we think cancerous tissue was sprayed into the pelvic cavity. As a result I had 11 sites of metastasis found with pet scan and removed during surgery. As of now there are two tumors growing but all other organs are clear. I am really hoping that Doxil is the drug that will put my cancer into remission. I have been fighting a lot of depression lately, went back to work part time but the uncertainty of my future makes me depressed even though I try to stay active etc. Any words of wisdom welcomed here.
hey Bella, Did you have hormone therapy? I was diagnosed in Nov 08, had six rounds of chemo ( doxorubicin and infosamide). Is now on femara?
hey mmzamm, I had uterine LMs, meta to liver. had a radio frequency ablation done to burn off the tumour in the liver. Perhaps your wife would like to consider that?
I just found out three days ago that I have leiomyosarcoma in my uterus. I am still trying to deal with all of the unknowns. I have a 7yr old son and I have no idea what to tell him at this point since my OB isn't able to tell me anything about the cancer. I have two oncologists lined up, appts have been made, now I am just waiting for next week to get here so I can get more info.
here in Canada we have a muted commercial on tv which illustrates the effect of a cancer diagnosis on family. A couple is seated in front of a doctor and we guess that he is announcing the diagnosis to the couple. The couple springs backwards in their seat as if solidly hit by a full-blown force. Then the couple in front of friends and family annouces the bad news and all the family falls backwards the same way. It is terrifyingly accurate even without words!
I have been diagnosed in May 2009 with Stage 1 LMS at age 36. I had a complete surgery with no traces left. I had adjuvant chemo even though studies doesn't show any conclusive advantage. The reason why i went on with it is simple. If I didn't do it, will I be satisfied that I did everything I could that I tried all options presented to me in order for that disgusting thing to go away and never come back? And what if it comes back? will I regret not taking chemo at the beginning? i didn't want to have to live with that burden.
I have a 5 year-old boy. I think that we worry too much about their resilience. I didn't want to tell him everything. I simply told him that mommy is sick but she will take medicine and try everything she can to get better. She may lose her hair but it will grow back. My only advice to you would be to dedramatize what cancer is.
Easier said then done you will tell me. You're right. But see this e-mail as a testimony of hope. After the diagnosis, I went from feeling incomprehension, bewilderment, sadness, anxiety, fury and finally a sign... You must think that I'm talking about a mystical sign... but no.. in fact I've tried for the first time in my life to look inside myself. I was a workholic(senior lawyer) and sometimes still am, trying like a bunch of you out there to be the perfect mom, perfect wife, perfect daughter...you get the picture! It sounds cliché but i never really stopped to see if my life had a meaning. I started reading excessively about LMS, then I tried to distance myself from the cancer itself by trying to understand life better and what I can do to enjoy it more. During my treatments last summer (I had 4 months of chemo)I read on buddhism, yoga, positive psychology and let me tell that it helped a lot. That was even more surprising to me since I never believed in the pop psycho mambo jumbo thing.
Looking behind, live your grief out, tire yourself by trying to understand LMS and why it touched you, surprise yourself by how tough you are and take all the love and the strength that your family and kids will give you...
good luck.. there is always hope..
Hi i had leomyosarcoma 2 and a half YRS ago. had a few times when we thought it had returned, but thank god so fare so good.
every day i thank the good lord up above . a nother day to wake up & see the sun shine, the little things in life we take for granted .
i am a nurse but when it comes to my self it all goes out the window fuuny that.
Hi, I am sorry to hear about your cancer. I too have sarcoma that has metasized from my uterurs to lungs and recently spine. I am wondering what to expect, ie. Pain??? Please share what to expect in the way of pain, treatments and their side effects. thank you, Adele Salamasina