Leiomyosarcoma chat

Dear Sandrajean,
I just came upon this board and your January message. I was orignally diagnosed
with leiomyosarcoma over 30 years ago. This may seem like a believe it or not message but this is
the honest truth. I have lived to raise my 2 sons and to see 4 grandsons. So I feel so very blessed. I assume you are working with a good oncologist and hope you are feelling
optimistic about your future. I will be hoping and praying for you so keep posting.
tbarbaraxx

tbarbaraxx said:

Dear shkay,
I am new to this board but not at all new to leoimyosarcoma. I have survived
for more than 30 years now. I wrote to a Sandra Jean who posted last
year also. I have had 5 different oncologists and none had had any experience with
leiomyosarcoma other than my case. However that neve r did prevent giving good care.
If you are still looking for someone to chat with, I am here.
Sincerely, tbarbaraxx

This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

Jan56 said:

This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

Jan,
Your message gives us so much hope!
My husband was also diagnosed with LMS and had his right kidney and part of ivc removed.

He is on Gemstar/Taxotere presently. The margins were not clean at the IVC

What did they do to your IVC. Did they ever reommend radiaton? Look forward to your reply and hope you are doing well,

hello there, my husband has diagnosed with leiomyosarcoma. he underwent surgery and 5 cycles of chemo. tell meabout your alternative therapy. my email id: shanthini_sabanayagam@yahoo.com

Jan56 said:

This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

I was diognosed with lms in
I was diognosed with lms in 2007. My primary was the inferior vena cava, right kidney vein and liver. I was started on gemzar and taxoter for 6 months. I had my surgery last July. They ramoved my vena cava and replaced it with a graft. My kidney was saved and had the tumor removed from my liver. No followup chemo. I now have a place in my liver growing. Now waiting to see the surgeon and inverentional radiologist for the next step. Did you recieve all of your treatment at MD Anderson? The closest sarcoma center from me is in Alanta, about 6 hours away. I feel my doctors are very knowlegable on this type of cancer, from what I have researched. But at times I feel I should be seen at the sarcoma center. How are you doing?

rachelle1 said:

I was diognosed with lms in
I was diognosed with lms in 2007. My primary was the inferior vena cava, right kidney vein and liver. I was started on gemzar and taxoter for 6 months. I had my surgery last July. They ramoved my vena cava and replaced it with a graft. My kidney was saved and had the tumor removed from my liver. No followup chemo. I now have a place in my liver growing. Now waiting to see the surgeon and inverentional radiologist for the next step. Did you recieve all of your treatment at MD Anderson? The closest sarcoma center from me is in Alanta, about 6 hours away. I feel my doctors are very knowlegable on this type of cancer, from what I have researched. But at times I feel I should be seen at the sarcoma center. How are you doing?

My Neice
Can anyone reccomend a specialist in Calif.? My neice has ULMS. Diagnosed in April 2009 stage IV. Her medical insurance is limited. And her DR's are pretty much saying get you life in order and prepare to die. Can anyone offer some direction?

ydlibra81 said:

Rachelle I'd love to chat
Rachelle I'd love to chat with you because my neice has stage IV ULMS diagnosed in April 2009, not long after you. She needs some kind of support from others with this disease. You can contact me @ yvonnemdaniels@yahoo.com

ULMS
I just noticed your post this morning and want to suggest (if you haven't already done so) that you join us on the Uterine Cancer board. There are many knowledgeable women there who are experienced in researching and fighting cancer. There are not many of us with leiomyosarcoma but many with other types of uterine cancers that can listen, support and share information with you and/or your neice.

Jan56 said:

This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

I know I posted a response
I know I posted a response prior to this...I would love for someone who has survived this rare cancer to please contact my aunt for some support, for she is losing all hope with her son, Tony, who has been diagnosed with LMS. Her son has lived in and out of the hospital since he was 2. He is now 20 yrs old. When he was 2, he began to lose his hair, which was due to the rare disease of AlapeciaTotalla (sorry if this is mis-spelled), an immune deficiency disorder. Thereafter, he was diagnosed w chrones and rheumatoid arthritis, which has heavily added to severe pain issues. 3 years ago, doctors were treating him for Pneumonia, which was misdiagnosed. He had congestive heart failure, which lead to a heart transplant weeks later. The catch is, that one yr prior to this transplant he had mono...which since then has laid dormant inside his body... Since he was on immune suppressants to prevent heart rejection, this mono inside had slowly attacked his cells, which now caused LMS...at least that is the shortened explaination. Since he was diagnosed with this they put him on Gleevek (however this is spelled), a pill-form of chemo treatment while they take him off his immune suppressants. He is at the Cleveland Clinic receiving treatment currently, and is anticipated to be there for a long time because of all the experiments they are trying.

Long story short, she is really losing her mind and I found this site so that maybe I could find someone in the world somewhere to give her some hopeful information that will keep her chin up during his struggles. The last thing he needs is to give up because someone else may be starting to...not that she will ever do so. BUt I am sure you all understand how difficult this all is, especially when the Doctors don't even know much about it.

Please someone contact myself about how to contact her if you would like to help. My mother's, her sister, email is karen.g@insureohio.com.

Thank you all...and good luck to everyone battling this. My prayers are with you all!

Chrissy

Leiomyosarcoma of the IVC

I was just diagnosed with leiomyosarcoma of the IVC. In 2014, after complaining of recurring abdominal pain, my Dr had me get an abdominal ultrasound which showed no abnormalities. Since then I continued to advise my primary Dr. during all subsequent visits that I kept having recurring pain in my abdomen that would usually subside after 1 - 3 days. In February 2017 I was finally sent for a CT scan, then MRI of abdomen and pelvic area. The tests indicated a retroperitoneal mass that invaded and compressed the IVC. There was no evidence of metastatic disease. On March 1, I had a CT Guided biopsy which resulted in failure to take tissue from the mass. The pathology report indicated mostly adrenal gland tissue, so I had to get another CT Guided biopsy. This time the pathology report says it is leiomyosarcoma of the IVC. I would appreciate hearing from anyone who has experience with this type of rare cancer. I have an appointment with the Oncologist on 4/11 to discuss the treatment plan. From what I read about this, open surgery is in my near future. I'm not clear about whether radiation and/or chemotherapy will also be used before or after surgery. I have Humana Gold Plus Medicare Advantage Plan in Palm Beach Co. FL. I am concerned about the copayments for all of the hospitalization and treatments I will need.  

Please reply with any information that you think might be helpful. Thanks!

Maria_50 said:

Leioymysarcoma information

Hi Pattie,

I have ulms leimoysarcoma. It's crucial to get as much information as possible. Here is a very helpful website to join. Go to lieomyosarcoma direct research fund. I joined and have learned so much about this disease through people who have been through the journey. Please check it out.

Best  wishes, and God bless..

Hi 

Hi 

What is the website?

Thanks