Leiomyosrcoma

selena · March 2001

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!

reneekarin1969 · May 2001

HELLO SELENA,
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
SIGNED, RENEE

plaidomatic · August 2001

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?

sandrajean · January 2002

reneekarin1969 said:
HELLO SELENA,
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
SIGNED, RENEE

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.

sandrajean · January 2002

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

mavill · April 2002

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.

saramarch4 · May 2002

reneekarin1969 said:
HELLO SELENA,
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
SIGNED, RENEE

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?

Sara

571er · March 2003

mavill said:
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.

joys · August 2003

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.

joys · August 2003

reneekarin1969 said:
HELLO SELENA,
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
SIGNED, RENEE

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.

sweetteddybear · February 2004

joys said:
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.
sincerely, Renee

homeschoolmom · February 2004

joys said:
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.

greyhound · April 2004

homeschoolmom said:
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.

zhamilton · May 2004

sandrajean said:
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.

Hi sandajean
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.

hopeforbest · August 2004

reneekarin1969 said:
HELLO SELENA,
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
SIGNED, RENEE

Dear Renee,
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

hopeforbest · August 2004

571er said:
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.

hopeforbest

hopeforbest · August 2004

sweetteddybear said:
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.
sincerely, Renee

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?

Hopeforthe best

gburns · December 2004

greyhound said:
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

zhavah123 · December 2004

reneekarin1969 said:
HELLO SELENA,
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
SIGNED, RENEE

Renee,

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.
Thanks! gloria

zhavah123 · December 2004

gburns said:
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

GB,

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?
Good luck
gloria

JanetBrown · July 2005

homeschoolmom said:
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.

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!

Leiomyosrcoma

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