Survival with leiomyosarcoma

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RE: Survival with leiomyosarcoma

by Sharon_in_San_Francisco on Wed Dec 02, 2009 03:00 AM

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For Leiomyosarcoma (LMS) help... please join our online support group for LMS... we have hundreds of families who have a lot of info to help you!

ACOR L-M-Sarcoma
http://listserv.acor.org/archives/l-m-sarcoma.html

Sharon Anderson, MSW
7 yr. stage IV, ULMS survivor,
Executive Director, LMSarcoma Direct Research Foundation  www.lmsdr.org
.... Working not Wishing ......

RE: Survival with leiomyosarcoma

by Anandp on Thu Mar 11, 2010 11:01 AM

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On Mar 22, 2007 12:00 AM Kbookcat8 wrote:

I was diagnosed last August with Stage IV Leiomyosarcoma.  I started chemotherapy last Sept. and my CT scans have been pretty positive. There has been a lot of tumor reduction as well as a great deal of necrosis (dead cancer cells).  However, my oncologist tells me that the longest anyone with this disease and stage has survived is three years.  Does anyone know of any instances of a longer survival with this.  Also, I am thinking of exploring other cancer centers that have more experience dealing with this rare type of cancer. Does anyone know personally of places that may offer more than gemzar/taxotere in treating this? Thank you!  Karen

Hi

 

My dad has got Pelvic Leomayosarcoma. In september, Doctor Performed a major surgery and did colostomya after removing rectom. The discease has reoccured now. Dr. has been giving affinitor for last two months. But he is not able to take affinitor for more the 3-4 days, as lots of side effects and he has to stop. Now we do not know what to do? Can anybody suggest me some kind of treatment possible ?

 

 

RE: Survival with leiomyosarcoma

by InsideTrip on Sat Mar 20, 2010 06:06 PM

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This is a general response to anyone reading this thread.  I was diagnosed at UCLA in Feb of 2003 with Stage IV Leiomyosarcoma of the IVC.  I have a long story to tell, but to sum it up, today is March 20, 2010, and I am alive and doing very well.  Much to the dismay of UCLA I declined all radiation and chemotherapy.  They pressed hard for these procedures, but I stood my ground.  I am living proof that survival is not only possible, but probable.  It's all about choices and being guided to make the right ones.  I am grateful for my experiences and I'm very willing to share my story, opinions, observations and insight to anyone who is, or knows someone who is, dealing with a similar disease.  Feel free to get in touch.  Peace.

RE: Survival with leiomyosarcoma

by Angie73 on Mon Mar 22, 2010 04:00 AM

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On Mar 20, 2010 6:06 PM InsideTrip wrote:

This is a general response to anyone reading this thread.  I was diagnosed at UCLA in Feb of 2003 with Stage IV Leiomyosarcoma of the IVC.  I have a long story to tell, but to sum it up, today is March 20, 2010, and I am alive and doing very well.  Much to the dismay of UCLA I declined all radiation and chemotherapy.  They pressed hard for these procedures, but I stood my ground.  I am living proof that survival is not only possible, but probable.  It's all about choices and being guided to make the right ones.  I am grateful for my experiences and I'm very willing to share my story, opinions, observations and insight to anyone who is, or knows someone who is, dealing with a similar disease.  Feel free to get in touch.  Peace.

Please I am very interested in hearing your story my sister has been battling stage IV Leiomyosarcoma that started as uteransarcoma, and now has metastisixed to the lower and upper abdominal area, she is only 39 and was diagnosed over a year ago. The doctors have given her two rounds of chemotherapy which they terminated in Sep/09, then in Nov/09 they tried 3 weeks of radiation, which they terminated necause it caused a fistula, and now they have given up and have told her to go home and die, they have neglected her for the past 4 months in Mount Sinai Hospital located in Toronto, Ontario. She currently is still in hospital, and we are trying to get her out of there asap, and look for alternative therapy, or something to prolong her life, here is my email address

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

. Please tell me what has kept you alive and well.  Angie

RE: Survival with leiomyosarcoma

by caseyk1978 on Wed Apr 07, 2010 07:13 AM

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Contact Dr. Kent, Dr. Gitelis, & Dr. Abrams at Rush University Medical Center.  I was in a lot of pain for over 2 years, & finally found out in September of '08 that I had a 12cm lms + osteo tumor in my pelvis & possible metastisis in my lungs.  I had 14 rounds of chemo + concurrent radiation & ressection of the tumor.  The chemo I did was Taxotere + Gemcitabine + Avastin and then later w/ the radiation I did Ifosfamide & Doxorubicin + more rounds of just the Ifos & Doxy post surgery.  I'm alive and doing well, and back to all the outdoor activities I used to enjoy.  The staff at Rush is amazing.

 

 

RE: Survival with leiomyosarcoma

by davis33 on Tue Apr 27, 2010 07:51 PM

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my wife has leiomyosarcoma, and has had one round of chemo.  what did you do that worked.

peace

RE: Survival with leiomyosarcoma

by collins on Thu May 06, 2010 05:45 AM

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Hi.  I am a 21 year survivor of LMS.  I am now 58 and was diagnosed at the age of 37. I had a uterine fibroid that was 15 cm removed in 1989 along with my uterus and ovaries.  (my mother had LMS and died when I was 26 - she was diagnosed at 45 and lived for 8 years with lots of chemo and cobalt - l970-1978)  I had two bone marrow transplants in 1989 @ MD Anderson and got 10 years cancer free, then 2 years, 4 years, 4 months, 2 years, 8 months, and had my last surgery in November 2009.  I have had one or two tumors in my pelvis/abdomen each time with the exception of my last surgery when I had five tumors in pelvis abdomen (one was in my spleen and had to have it removed)  I just had ct scan in March, 2010, and now I have four tumors, all in my pelvis and one that is 2.5 cm but the others are very small.  I will go back to MDAnderson in June to see if they have grown and decide what to do.  My surgeon is saying that maybe I need to look at chemo because I have had seven surgeries and maybe chemo would reduce the tumors but I want to have a shot at surgery again so we will discuss my options when I see if they have grown any in the last three months.  I usually go every 3-4 months for CT scans and have been doing that for 21 years. 

How many surgeries have you had and how many tumors have you had each time?  Mine is considered low grade also but in the beginning in 1989, it was high grade. 

Hope you are still doing well.  Please respond as I would love to hear from you.  Sharon

 

 

RE: Survival with leiomyosarcoma

by sarahalex12 on Wed May 26, 2010 07:31 PM

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On May 06, 2010 5:45 AM collins wrote:

Hi.  I am a 21 year survivor of LMS.  I am now 58 and was diagnosed at the age of 37. I had a uterine fibroid that was 15 cm removed in 1989 along with my uterus and ovaries.  (my mother had LMS and died when I was 26 - she was diagnosed at 45 and lived for 8 years with lots of chemo and cobalt - l970-1978)  I had two bone marrow transplants in 1989 @ MD Anderson and got 10 years cancer free, then 2 years, 4 years, 4 months, 2 years, 8 months, and had my last surgery in November 2009.  I have had one or two tumors in my pelvis/abdomen each time with the exception of my last surgery when I had five tumors in pelvis abdomen (one was in my spleen and had to have it removed)  I just had ct scan in March, 2010, and now I have four tumors, all in my pelvis and one that is 2.5 cm but the others are very small.  I will go back to MDAnderson in June to see if they have grown and decide what to do.  My surgeon is saying that maybe I need to look at chemo because I have had seven surgeries and maybe chemo would reduce the tumors but I want to have a shot at surgery again so we will discuss my options when I see if they have grown any in the last three months.  I usually go every 3-4 months for CT scans and have been doing that for 21 years. 

How many surgeries have you had and how many tumors have you had each time?  Mine is considered low grade also but in the beginning in 1989, it was high grade. 

Hope you are still doing well.  Please respond as I would love to hear from you.  Sharon

 

 

Wow you are a true inspiration ! I was curious though since both you and your late mother had LMS is it by any chance hereditary ?? Because as far as I know LMS is rare and no hereditary link has been found. And also did you both have it at the same site ? I would appreciate your reply.

RE: Survival with leiomyosarcoma

by Jeri_Ann on Tue Jun 15, 2010 12:04 AM

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 I am also struggling with Stage 4 leiomyosarcoma. I would be most GRATEFUL if you would share your story with me. I am a 40 year old female. I am trying alternative medicine but use cyberknife and surgery when possible. I just reached my two year mark. chemo, radiation, cyberknife, surgeries, RFA.  I rush into my decisions as I am so scarred of leaving my daughter not raised, etc--please share your story with me, either you can email me

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 or call me this is in Colorado.  Thank you. My name is Jeri

RE: Survival with leiomyosarcoma

by Jeri_Ann on Tue Jun 15, 2010 12:04 AM

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 I am also struggling with Stage 4 leiomyosarcoma. I would be most GRATEFUL if you would share your story with me. I am a 40 year old female. I am trying alternative medicine but use cyberknife and surgery when possible. I just reached my two year mark. chemo, radiation, cyberknife, surgeries, RFA.  I rush into my decisions as I am so scarred of leaving my daughter not raised, etc--please share your story with me, either you can email me tomjeriliz@msn.com or call me 719-269-9669 this is in Colorado.  Thank you. My name is Jeri

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