Leiomyosarcoma

tennesseekidd

terrigaona222 said:

Caregiver

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.

leiomyosarcoma

I had this cancer in 1995 from neurofibromatosis and there wasn't any chemo then for this cancer. I hope she gets another opinion it sounds like the doctor doesn't know what he or she doesnt' know what thier doing.

dsmitty53

Leiomyosarcoma studies

Hello, In 2003 my mother died of leimyosarcoma. I have been having symptoms that she had. Has anyone learned more about this cancer and does it run in families? I do not have insurance, make too much money, but have a lot of debt and do not make enough to afford the biopsy to find out if I have this. I was told that I have a thickening area in my uterus but can not afford the procedure to find out. Does the American Cancer Society offer any services to help me see if I have this same type of cancer?

Oneinabillion

quarryhome said:

Prayers

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!

Really Quarryhome?  You think I had a leiomyosarcoma tumor removed along with a kidney and used a pediotrist that dabbles with sarcomas? :-)  That's just my sense of humor, don't take offense.  Actually I am being treated at MSKCC so I not only have a sarcoma specialist but I even have leiomyosarcoma speciialists on board.  Sorry I didn't respond earlier.  To be honest I forgot all about putting on this message. I came to the sight because I got some email about taking a survey.  Well the good news is the scans have been negative.  The end of this month will be a year and a half and since I don't have a CT scan scheduled this month I guess I'll make it.  Quarryhome, I hope I do change the odds more favorably for the next guy as you are the next guy :-)  I just had to call up the website again so I could read the other messages I wanted to address.  LEGALEAGLE, So what did you guys decide as far as the chemo/radiation.  I haven't heard anything about proton radiation yet.  Hope that thing on his lung turned out to be nothing.  SGPGAL, I would think by this time you have found a sarcoma treatment center.  I think listed as the 2 best are MD Anderson and MSKCC although Dana Farber and Columbia Presbitirian are up there as well.  There are also some other good ones I'm sure.  I would probably look one of the sarcoma centers listed on this website I believe that is nearest to you but one that has experience with leiomyosarcomas.  TERRIGAONA222, is she being treated at a sarcoma center?  DSMITTY53 I hope with the new health care system we have in this country you will be able to get the care that you need if you haven't been able to get it already.  NewJulsey mention a book to read as far as diet.  My "intergrated" doctor (never even heard of that before) suggested reading Anticancer A new way of life.  It's any interesting book giving lists of foods that are supposedly good for certain things and not good.  I was told to try to at least eat one of the anti cancer foods listed at each meal.  I have seen some sites that talk about foods that are good for different types of cancer (well preventing them). Unfortunetly the food that seems to general be the best is Brussel Sprouts YUCK. Haven't we been through enough already, but Brussel sprouts. :-)  The thing I don't like about this site is that you don't know how people are doing.  Good luck to all and my prayers are with you. 

Oneinabillion

dsmitty53 said:

Leiomyosarcoma studies

Hello, In 2003 my mother died of leimyosarcoma. I have been having symptoms that she had. Has anyone learned more about this cancer and does it run in families? I do not have insurance, make too much money, but have a lot of debt and do not make enough to afford the biopsy to find out if I have this. I was told that I have a thickening area in my uterus but can not afford the procedure to find out. Does the American Cancer Society offer any services to help me see if I have this same type of cancer?

Strange

FYI They put responses after the message you hit reply to instead of at the bottom so my response dated Dec 5 is up in the middle someplace.

suzanne611

Oneinabillion said:

Strange

FYI They put responses after the message you hit reply to instead of at the bottom so my response dated Dec 5 is up in the middle someplace.

sarcoma specialist is a must

I was diagnosed with LMS in april 2010 with stage 4 .primary a retroperitoneal mass with mets to liver, rt ureter and abdominal mass.  Little did I know my prognosis was 1 year.  4 rounds of chemo, radiation (includingcyberknife) and 7 surgeries later..i am still here.  I give total credit to Martee Hensley at Sloan Kettering. I use her sa a consultant because I live in Syracuse. 

The interesting thing is that when I was diagnosed the "internet" said no chemo was effective an surgery was the only option. then I met with Dr Hensley and was put on her research study and had resolution of the tumors. Reason I am saying this is that there ARE treatments available YOU have to be aggressive and do your homework. 

Now there are at least 4 treatment options along with new research studies being done which are new since 2010

I also was contacted regarding the survey

good luck and God bless

 

 

 

Oneinabillion

suzanne611 said:

sarcoma specialist is a must

I was diagnosed with LMS in april 2010 with stage 4 .primary a retroperitoneal mass with mets to liver, rt ureter and abdominal mass.  Little did I know my prognosis was 1 year.  4 rounds of chemo, radiation (includingcyberknife) and 7 surgeries later..i am still here.  I give total credit to Martee Hensley at Sloan Kettering. I use her sa a consultant because I live in Syracuse. 

The interesting thing is that when I was diagnosed the "internet" said no chemo was effective an surgery was the only option. then I met with Dr Hensley and was put on her research study and had resolution of the tumors. Reason I am saying this is that there ARE treatments available YOU have to be aggressive and do your homework. 

Now there are at least 4 treatment options along with new research studies being done which are new since 2010

I also was contacted regarding the survey

good luck and God bless

 

 

 

Wow

You go girl.  Thanks for sharing, I think that people will find that both useful and inspiring.  As Mr. Spock would say Live Long and Prosper.

 

share_hope

hi

I am new to this forum and been diagnosed with leiomyosarcoma in april 2011 and again in october 2013 in liver.I have had partial gastrectmy and nothing for liver mets yet.Its been a rollar coaster ride from last two months as doctors here in Australia still working out the best treatment.

share_hope

suzanne611 said:

sarcoma specialist is a must

I was diagnosed with LMS in april 2010 with stage 4 .primary a retroperitoneal mass with mets to liver, rt ureter and abdominal mass.  Little did I know my prognosis was 1 year.  4 rounds of chemo, radiation (includingcyberknife) and 7 surgeries later..i am still here.  I give total credit to Martee Hensley at Sloan Kettering. I use her sa a consultant because I live in Syracuse. 

The interesting thing is that when I was diagnosed the "internet" said no chemo was effective an surgery was the only option. then I met with Dr Hensley and was put on her research study and had resolution of the tumors. Reason I am saying this is that there ARE treatments available YOU have to be aggressive and do your homework. 

Now there are at least 4 treatment options along with new research studies being done which are new since 2010

I also was contacted regarding the survey

good luck and God bless

 

 

 

li-fraumeni

As this cancer is very common in people with Tp53 mutation (Li-fraumeni syndrome).The problem is not, many doctors understand this condition and are capable of diagnosing and treating this cancer.

It make a difference of life and death if you are treated with expert multidisplinary team of doctors specilised in sarcomas.

Oneinabillion

dsmitty53 said:

Leiomyosarcoma studies

Hello, In 2003 my mother died of leimyosarcoma. I have been having symptoms that she had. Has anyone learned more about this cancer and does it run in families? I do not have insurance, make too much money, but have a lot of debt and do not make enough to afford the biopsy to find out if I have this. I was told that I have a thickening area in my uterus but can not afford the procedure to find out. Does the American Cancer Society offer any services to help me see if I have this same type of cancer?

Hi dsmitty53,  I have never heard of leiomyosarcoma running in families, so not being a doctor, my guess would be that it is extremely unlikely that you have it.  That being said, of course you need to have it checked out as even if it's not that it could be something else.  Hopefully, being that you wrote this back in Sept., you have been able to get health insurance through the Affordable Care Act.  I look on the ACS website and they list their phone number as 1-800-227-2345 where they can give you more information.  You can also go to Healthcare.gov or call 1-800-318-2596.  I know this is kinda basic information, but I also know how overwhelming this can be and just want to make sure you have someplace to ask.  It sounds like they migh also be able to help you find other options for payment, and support programs in your area.  All I know is hopefully you have had this looked at already but if not don't waste time.  Do it as soon as you can.  Sorry I can't be of more help but good luck.

Oneinabillion

share_hope said:

hi

I am new to this forum and been diagnosed with leiomyosarcoma in april 2011 and again in october 2013 in liver.I have had partial gastrectmy and nothing for liver mets yet.Its been a rollar coaster ride from last two months as doctors here in Australia still working out the best treatment.

Hi share_hope,  I agree based on everything I have hear that getting to a hospital that has a sarcoma center is very important.  on the website http://sarcomaalliance.org/sarcoma-centers/ they list 2 sarcoma centers in Australia.  Just hit the link and it will take you there.  I hope you are going to one of these but if not I would try to get there if you want to stay in Australia and the sooner the better.  Good luck.

 

Oneinabillion

Oneinabillion said:

Hi share_hope,  I agree based on everything I have hear that getting to a hospital that has a sarcoma center is very important.  on the website http://sarcomaalliance.org/sarcoma-centers/ they list 2 sarcoma centers in Australia.  Just hit the link and it will take you there.  I hope you are going to one of these but if not I would try to get there if you want to stay in Australia and the sooner the better.  Good luck.

 

where is anybody

Hello, hello, hello is there anybody out there, can anybody hear me, is there any-bod-y home

 

woody1022

New patient

I was just diagnosed in December 2014.I felt a painful pea sized lump near my right knee & was told it was fatty tissue.After two & a half years I finally had it removed & was told it was a high grade leiomysarcoma tumor.Just had a second surgery one week ago to take out surrounding tissue that may have been contaminated.Still waiting on results.Dr. appointment on February 9 for follow up on surgery.Hope to hear results then.I am absolutely terrified & hoped posting & sharing would help.The tumor was 1 centimeter.Don't know if that is a good thing or not being small.I just want to be able to see my ten year old daughter & two year old grandson grow up.

PA GIRL

ultracyclist said:

Caregiver

I too am a caregiver. my wife has been fighting LMS since 1998. I wish I knew then what I know now. LMS does not nrespond well to chemo or radiation. There is now a new chemo that was just released, Votreint. She started taking it but had to stop due to a serious infection. You need to find Good oncologist who knows what they are doing. We are from the Philly area and are to Jefferson Hospital for her treatment. All LMS are rare cancers, with very few people having them, but hers is even more rare. It is atypical, only having a 3 - 5 % growth rate. That means that all the chemos she had only gave her the side-effects. After 5 oncologist, we found one who finally asked the unasked question, why are you still alive and proceeded to investigate. She is best. If you want the contact, I will get glad to forward it to you.

 

My prayers are with both of you

 

ultracyclist

JEFFERSON DOCTOR NAME PLEASE HELP!!!!!!!!!!!!!!!!!!!!!!!

Hi,

 

PLEASE tell me the name of the Jefferson doctor you mentioned.  My mom is being treated there and our doctor is not optimistic which is not helpful.  This is hard enough!!!

 

Greatly appreciated,

Ginny

CJ3680

woody1022 said:

New patient

I was just diagnosed in December 2014.I felt a painful pea sized lump near my right knee & was told it was fatty tissue.After two & a half years I finally had it removed & was told it was a high grade leiomysarcoma tumor.Just had a second surgery one week ago to take out surrounding tissue that may have been contaminated.Still waiting on results.Dr. appointment on February 9 for follow up on surgery.Hope to hear results then.I am absolutely terrified & hoped posting & sharing would help.The tumor was 1 centimeter.Don't know if that is a good thing or not being small.I just want to be able to see my ten year old daughter & two year old grandson grow up.

Hi woody , how did it all go

Hi woody , how did it all go ? . I hope they managed to contain the tumour and that you are doing well . 

woody1022

CJ3680

Thank you so much for asking.I'm hoping that I got my miracle.The surrounding tissue was 100% clear which shocked my doctor.Getting tests every 6 weeks to try to stay on top of it.So far, so good.Got another one next week.I'll keep praying.Hope the news is good for everyone else out there with this horrible disease.

morecoffeeplease

Sarcoma Centers and Leiomyosarcoma diagnosis

My husband is going through his second occurrence of LMS. The first tumor was found and removed from his small intestine, but not until after they thought it was everything from a bowel blockage to cardiac problems to scar tissue from a previous surgery. He was bleeding internally because the tumor had grown to 9 cm before they finally did an MRI an found the mass. The good news is that they were able to do a resection and get clear margins, and he was blessedly cancer-free for 18 months. But his last scan showed a small spot on his liver that turned out to be that old devil again. Our local oncologist recommended immediate surgery but this time we opted for a second opinion at Memorial Sloan Kettering since they are one of the few sarcoma centers in the country. This was the best decision we have ever made.

We saw Dr Yoon (surgical oncologist) and Dr DeAngelo (medical oncologist) and they both recommended a minimum of 2 and up to 4 rounds of Gemzar and Taxotere depending on hubby's ability to tolerate the chemo. Here's why: once LMS has metastasized they know that there are undetectable microscopic cancer cells that have moved from the primary site to the new location. The chemo is intended to kill these micro cells and ideally shrink the tumor prior to the planned surgery. As Dr Yoon said, it would not be good to have major surgery only to have the cancer show up somewhere else before you even have a chance to heal. My husband will get a scan after the end of round 2 (next week) and if the tumor has grown smaller, or even stays the same, we'll know the chemo is working. The odds are 1/3 shrinking tumor, 1/3 no change in size, 1/3 the tumor continues to grow (not what we want to hear). 

This is why you have to go to a sarcoma center for this cancer. Most oncologists have never seen LMS and the treatment is evolving. The docs at the sarcoma centers are at the forefront of research and aren't afraid to take aggressive action. We were ready to drain the retirement account and go to whereever we could get the best treatment, since our goal is to CURE my husband. We may not be successful but I would hate to regret not trying everything. Fortunately he can get his chemo and scans done locally and our oncologist is working with the MSK docs. But the surgery will be performed by Dr Yoon at MSK.

Here's another thing they told us at MSK: the survival statistics that you may read online are unreliable simply because this is such a rare disease there isn't sufficient data to have good statistics. Every patient is different and as long as the tumor is operable, survival is possible. LMS is a scary diagnosis but where there's life there's hope.

So good luck to all of you and say a little prayer for my husband.

Tcboehm

Indianapolis Dr Rushing

all i ha d a poor prognosis and Dr Rushing from IU saved my life.  Call and ask to be seen immediately!!

 

tracy

mother of two

317.331.2324

1estymammaw

Tcboehm said:

Indianapolis Dr Rushing

all i ha d a poor prognosis and Dr Rushing from IU saved my life.  Call and ask to be seen immediately!!

 

tracy

mother of two

317.331.2324

1st Time on a Board, Retroperitoneal Leiomyosarcoma here!

Hi, 65 1/2 yr old female with Retroperitoneal Leiomyosarcoma.  High Risk, High Grade, removed very large tumor, had 2 cycles Gemcitabine/Taxotere.  Had to quit, messed up my lungs.  anybody out there with My cancer?  thanks for responding

david54

1estymammaw said:

1st Time on a Board, Retroperitoneal Leiomyosarcoma here!

Hi, 65 1/2 yr old female with Retroperitoneal Leiomyosarcoma.  High Risk, High Grade, removed very large tumor, had 2 cycles Gemcitabine/Taxotere.  Had to quit, messed up my lungs.  anybody out there with My cancer?  thanks for responding

Hello!

How are you doing? My wife has just been diagnosed with LMS (A lot easier than trying to pronounce the whole thing). We are going to Stanford next week to see a specialist. Her cancer is "Everywhere" according to the PET scan, lungs, liver, GI tract. I used to be an oncology nurse, perhaps some can only imagne what is going on in my head.

You are in my prayers, please remember my wife in yours as well.

Thank You

JaniceB

Tcboehm said:

Indianapolis Dr Rushing

all i ha d a poor prognosis and Dr Rushing from IU saved my life.  Call and ask to be seen immediately!!

 

tracy

mother of two

317.331.2324

Dr Rushing is amazing

Hi Tracy,

We are currently seeing Dr Rushing, btw he is a special individual who explains everything at a level anyone can understand.  My husband has LMS.  I want to know how you're doing and what treatment you had.

Take care, Janice