Survival with leiomyosarcoma

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RE: Survival with leiomyosarcoma

by gator56 on Mon Jan 24, 2011 01:47 AM

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I have a family member who had leiomyosarcoma   she was 40 years old just passe away 2 weeks ago she had it for 5 years.

 

RE: Survival with leiomyosarcoma

by FullyPresent on Sat Feb 05, 2011 03:11 AM

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I was diagnosed with ULMS in November of 2008. After a hysterectomy, I have pursued all natural methods of stimulating my immune system. I have had no evidence of disease for over two years. When I was first diagnosed, I looked on the internet for words of hope from a ULMS survivor. Since I couldn't find one, I created my own site where I share positive information regarding natural ways to build up your immune system, your spirit and your mind. Please come and visit:

http://uterine-leiomyosarcoma.blogspot.com/

RE: Survival with leiomyosarcoma

by carla543 on Sat Feb 12, 2011 02:47 PM

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Hi my name is carla

I have just read your message re; survival with leiomyosarcoma I would love to chat with you maybe you could help me, I was diognosed with ULMS end of july 2010, they offered me radiotherepy but I turned it down I was a stage 1c and grade 3 leiomyosarcoma my scans have been clear upto a few days ago, I was getting really bad pelvic pain and my doc did a water sample and said I had a UTI so i was anti biotics for a week but the pain didnt get any better seemed to get worse if anything on Monday eve i callapsed with the pain and ended up in A&E they did a ultra sound scan and found a 12x8x8cm tumor in my pelvis (midline). I cant get to see my oncologost till wednesday they have given me strong pain killers to ease the pain but im so nervous because I havnt got a clue what will happen on wednesday, have you ever heard of pelvic recurrance and could you give me any insight at all of what im facing id rather know then i can prepare myself.

your very brave and obviously you have made the right choices it lifts my spirits just reading your message thank you

Carla x

RE: Survival with leiomyosarcoma

by FullyPresent on Sun Feb 13, 2011 08:24 PM

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Dear Carla,

I will message you privately and begin to pray for you immediately.

RE: Survival with leiomyosarcoma

by Sarcoma138 on Mon May 16, 2011 02:39 PM

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According to what I have read, Leiomyosarcoma Stage I is curable. Get yourself to MD Anderson in Houston, Texas as fast as you can. They will help you.

My Stage is IV. There is no hope for me other than remission. I am currently at MD Anderson. I travelled from Boston, MA.

New diagnosis

by Puppysmomm on Fri Jun 03, 2011 02:47 AM

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I just found out yesterday that I have LMS.  All of this information is overwhelming!  I know to stay away from bad food but I don't know what to eat so I am hardly eating anything!

RE: Survival with leiomyosarcoma

by Puppysmomm on Sun Jun 05, 2011 08:44 PM

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On Feb 12, 2011 2:47 PM carla543 wrote:

Hi my name is carla

I have just read your message re; survival with leiomyosarcoma I would love to chat with you maybe you could help me, I was diognosed with ULMS end of july 2010, they offered me radiotherepy but I turned it down I was a stage 1c and grade 3 leiomyosarcoma my scans have been clear upto a few days ago, I was getting really bad pelvic pain and my doc did a water sample and said I had a UTI so i was anti biotics for a week but the pain didnt get any better seemed to get worse if anything on Monday eve i callapsed with the pain and ended up in A&E they did a ultra sound scan and found a 12x8x8cm tumor in my pelvis (midline). I cant get to see my oncologost till wednesday they have given me strong pain killers to ease the pain but im so nervous because I havnt got a clue what will happen on wednesday, have you ever heard of pelvic recurrance and could you give me any insight at all of what im facing id rather know then i can prepare myself.

your very brave and obviously you have made the right choices it lifts my spirits just reading your message thank you

Carla x

Hi Carla - Was just wondering how you are feeling.

RE: New diagnosis

by FullyPresent on Mon Jun 06, 2011 01:21 AM

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Hi,

I'm sorry to hear of your diagnosis. You mentioned that you didn't know what to eat. I have outlined the Recovery Diet which is used by Hallelujah Acres on my blog: http://uterine-leiomyosarcoma.blogspot.com/.  It is very similar to the Gerson diet and Optimum Health Institute's diet. Think of food as medicine, and eat things that have medicinal properties: organic raw vegetables and salad, lightly steamed cruciferous vegetables, juicing wheat grass, juicing carrots and cucumbers, and some organic high antioxidant berries is a good start.

RE: Survival with leiomyosarcoma

by jgishere on Sat Jun 18, 2011 10:12 AM

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I was diagnosed with LMS in 1985 at Sphon hospital...had a hysterectomy and that was the only treatment I was given. Now, in 2011, I was taking a CT for myesthina gravis and a small 1.5c was found on my rt lung.  They said it might be an old scar...I hope so.  I am headed for MD Anderson on the 22nd of June.  When I was first diagnosed, I could not find anything about it.  Today I just read that it can be caused by vinyl chloride exposure. My father was in the vinyl chloride unit at Celanese Chemical Plant.  I was a daddy's girl and was the first one to meet him at the door when he came home from work.  They didn't know to wash up and dispose of their clothes before picking up the babies back then....My brother is a pt at MD Anderson with stage 4 lymphoma...he also worked at the plant.  MD Anderson has him in remission in a study. He is doing great.  He is about the only one in his group from the plant that hasn't died of cancer.  There were so many. I would advize anyone who has cancer to get to MD Anderson ASAP.  People from all over the world go there. Sorry this is so long but just wanted to let all know that I was diagnosed many years ago...hope it helps.

RE: Survival with leiomyosarcoma

by Puppysmomm on Tue Jul 26, 2011 02:30 AM

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On Jun 18, 2011 10:12 AM jgishere wrote:

I was diagnosed with LMS in 1985 at Sphon hospital...had a hysterectomy and that was the only treatment I was given. Now, in 2011, I was taking a CT for myesthina gravis and a small 1.5c was found on my rt lung.  They said it might be an old scar...I hope so.  I am headed for MD Anderson on the 22nd of June.  When I was first diagnosed, I could not find anything about it.  Today I just read that it can be caused by vinyl chloride exposure. My father was in the vinyl chloride unit at Celanese Chemical Plant.  I was a daddy's girl and was the first one to meet him at the door when he came home from work.  They didn't know to wash up and dispose of their clothes before picking up the babies back then....My brother is a pt at MD Anderson with stage 4 lymphoma...he also worked at the plant.  MD Anderson has him in remission in a study. He is doing great.  He is about the only one in his group from the plant that hasn't died of cancer.  There were so many. I would advize anyone who has cancer to get to MD Anderson ASAP.  People from all over the world go there. Sorry this is so long but just wanted to let all know that I was diagnosed many years ago...hope it helps.

How are you doing?

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