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Leiomyosarcoma chat

sandrajean
Posts: 3
Joined: Jan 2002

I am searching for survivors of leiomyosarcoma and would like to chat about treatments. Sandra from Alaska

shkay
Posts: 2
Joined: Apr 2002

I have a form of LMS, would also like someone to chat with about it. It is so rare that you hardly find anyone with it. The form I have is GIST. Hope you are doing well. I live in West Virginia and attend a cancer support group here, no one had ever heard of my cancer. Hope to hear from you, Sharon

tbarbaraxx
Posts: 3
Joined: Feb 2003

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

Jan56
Posts: 1
Joined: Mar 2003

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.

tbarbaraxx
Posts: 3
Joined: Feb 2003

I am hapy to be able to write to another 'long tem survivor'...long may we live!!! Though the treatments,
surgeries, medications may seem harsh they are turniing cancer into a disease instead of a threat
When I was first diagnosed I had two small boys and now I have 4 small grandsons....a rather
remarkable turn of events. when I look back on it. You seem to have confidence in your care takers
and that's so important. Keep me posted. Wishes and prayers, Barbara

zhavah123
Posts: 3
Joined: Dec 2004

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,

Shanthu
Posts: 2
Joined: Nov 2005

zhavah
hello. i am new to this group.
My husband was diagnosed with a leiomyosarcoma.
He too had undergone left nephretomy and chemo with adrimycin and iphosphamide 5 cycles.His posterior resection margins were not clear. I would like to know about the chemo that your husband had undergone
hope to hear from you.
love
shanthu

rachelle1
Posts: 1
Joined: Jul 2009

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?

suefromva
Posts: 2
Joined: Apr 2010

How are you doing now? My 52 yr old brother was diagnosed with LMS of the IVC last year after almost dying from strokes caused by the blood clots caused by the tumor on/in the ivc. He has had 5 cycles of gemzar/tax. protocol. A CT scan Monday to see what is happening. Prior CT showed tumor growth had stopped. Hope it is reversed now. Contacting surgeons about ivc tumor removal but also has mets to lungs. Looking at going to Germany to Dr Rolle for that. Currently being treated by U Denver Dr. Elias, but consulting with Sloan Kettering Dr Schwartz,

ydlibra81
Posts: 2
Joined: May 2010

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
Posts: 2
Joined: May 2010

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

faith316
Posts: 25
Joined: Mar 2010

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.

chrissygenovese
Posts: 5
Joined: May 2010

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

chewy
Posts: 1
Joined: Jun 2005

I am a leiomyoasarcoma survior. I'm 49 years old. I'd love to chat. my name is Shirley and e mail is asciutto@strato.net

chrissygenovese
Posts: 5
Joined: May 2010

I have a cousin who was just diagnosed w this rare cancer. He had a heart transplant almost 3 yrs ago in july...july 4th. He was on immune suppressants and developed epstein bar which they think is what caused this cancer...he has a tumor on his liver and in his brain. They have poked and done procedure after procedure day after day. He has been in the hospital for 2 months now and they aren't predicting he will be out any time soon. How are you Sharon...and when were you diagnosed with this? What do they know so far? and what is their prognosis? if any...

Chrissy

If you would like to write me at my personal email, please send to chrissygenovese@hotmail.com or karen.g@insureohio.com...I will get to it quicker than here.

tbarbaraxx
Posts: 3
Joined: Feb 2003

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

Shanthu
Posts: 2
Joined: Nov 2005

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

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