Leiomyosarcoma

Leiomysarcoma
hi there just wondering hows every body its been a long time i haveent sine in will im still here god has me here for a reason i would like to meet some persons, thay told me thats there no cure from this cancer Leiomysarcoma i have it in both lungs i wish some wone out there will talk to me.

mb112660 said:

Hi Lupe.Im so happy to see a recent post from you. I am newly diagnosed with this disease so I cant offer much information as I am still researching myself. Dont lose hope.God is good and I have seen many comments on the boards of people that are survivng this cancer.How are you doing?What treatment plan are you following? I will be starting radiation treatments soon. Im nervous and scared,but Im sure thats normal. Ill be praying for you.

I too am happy to see Lupe's
I too am happy to see Lupe's post! It's very encouraging to see someone courageously fighting this awful disease. You are an inspiration to everyone! Thank you!

mb112660 said:

Thank you SOOOO much!

hello
hello mb,
Hope all is well. drop me a hello at ksodders@jlroerts.com i would like to talk to u.

Thanks

Ginge said:

Hi, Like the two of you we
Hi, Like the two of you we are trying to learn everything we can...we thought about diet changes and have made some, but the UCSF sarcoma specialist said that cancer takes whatever it needs from your body. If you cut out your sugar intake, it will take it from your body in other ways. Your body needs sugar, but the cancer will always take what it needs first. Also my husband lost 30+ lbs after surgery so they didn't want him restricting his diet at all. He was to eat whatever he felt like. He's gained 20 back and is good now. But I am curious what was Greta's tumor growing from, muscle, veins? If you'd prefer not to discuss it that's OK we understand. Mike actually came home from work on a Friday saying he felt like he'd eaten something "bad". He had alot of abdominal pain that radiated to his back. The next morning he got up and wanted to go to the ER. (Totally out of character for Mike!) So we went and they ran all kinds of tests and couldn't find anything wrong. They didn't do a CT just in case it was something he had eaten. But old us they would do it if we wanted it done. Mike decided to wait and see, promising to come back if it got worse. They gave him something for the pain. It didn't get better by Monday morning we were back in the ER and the same doctor was there so he immediately did the CT scan. Several hours later they told us he had a 4cm tumor on his adrenal gland. They are almost always benign (95%). Then it took 2weeks to get a biopsy done. The biopsy was "inconclusive" but showed spindle cells which are not in adreanl glands. At this point I think the doctors knew it was probably LMS but wouldn't say it. They all agreed the best course was for it to come out. So April 14th the surgery was done and we didn't get a final diagnosis until 2weeks later after pathology was done with the tumor. It was so hard because it went from this little benign tumor, to we think it's something else, now we think it might be malignant, and oh yea, you will loose your kidney too. He also never really had any kind of symptoms that something was wrong! It was January 27th when they first found the tumor so it was at least 3 months of not being sure what was going on. Mike's tumor was a grade 3, mostly it was already necrotic (dying. It was a little smaller than they thought too only 3.2 cm. When he got the radiation the doctor said this isn't going to change is survival rate it is just to manage the cancer. They don't want it coming back to this area. Mike looks really good, you wouldn't believe he he's been through all this. We seem good to others but it is so hard! We have a great family support and lots of good friends and most of all have a strong faith and know this has helped us through this ordeal. But it is still the most frightening thing we have had to deal with. We too have grandchildren, Caitlyn is 6, Jack is 4, and Peyton is 18 mths. Jack is very close to his grandpa I don't know what he would do without him. I know this is a strong incentive for Mike as well. Sometimes when I feel sad I just go see one of the kids!
Sorry if I've gone on too much, it just seems like we needed to find someone else who knows what we are thinking and feeling. Thanks

Cindy

New Dagnosis
Like all the others my husband is 4 out of a million. On Dec.2,2010 he had 18 cm.stage 3 grade 3 LMS tumor removed from his liver. With over half his liver resected and his gall bladder removed got the pathology report as LMS....not real sure it is the primary because liver lms is extremely rare. Only about 17 documented cases. The tumor touched too many organs to have radiation so we began a chemo regimin of Gemzar/ Taxatore today. This is protocol for uterine LMS. No known treatment for Liver LMS .We have been told it will most likely reoccur if it ever even goes away.Our world has been turned upside down and it is helpful to see so many others in the same position for support. Thanks. Kathy

kwilli6422 said:

New Dagnosis
Like all the others my husband is 4 out of a million. On Dec.2,2010 he had 18 cm.stage 3 grade 3 LMS tumor removed from his liver. With over half his liver resected and his gall bladder removed got the pathology report as LMS....not real sure it is the primary because liver lms is extremely rare. Only about 17 documented cases. The tumor touched too many organs to have radiation so we began a chemo regimin of Gemzar/ Taxatore today. This is protocol for uterine LMS. No known treatment for Liver LMS .We have been told it will most likely reoccur if it ever even goes away.Our world has been turned upside down and it is helpful to see so many others in the same position for support. Thanks. Kathy

My husband too
Dear Kwilli6422,
I am so sorry to hear about your husband. I hope he is feeling somewhat better now. My husband too was diagnosed with LMS his was on the renal vein coming out of the kidney. He had his kidney, most of his adrenal gland and alot of lymphnodes taken out. His stage is at this time 1bsomething I'm not sure. His tumor was small but it too was a grade 3. We are now doing CTs every 4 months watching a nodule in his lung. One thing I will let you know about, my husband has alot of pain at the incision area still, but we got a wrap type thing that he wears and it has really helped him. They sell them in sports stores too. I hope this is a tip that can help your husband's recovery. It's really hard dealing with such a rare disease that's a big part of what scares me the most. Do we ever know if we are doing the right thing or even just doing enough? Just hang in there, we are not alone! Lots of us out here fighting this ugly ugly ugly stuff! Let me know if you would like to contact me. Wish you and your husband some peace and a calm heart.

Ginge said:

Hi again, I was happy to
Hi again, I was happy to find the two of you as well. You feel like you are the only ones dealing with this awful stuff. My husband did really, really well with radiation. They said he might have loose stools, he didn't, not once. They said there was a possibility of skin irritation like a sun burn, didn't happen. He was tired, and he did have some nausea. Over all he did so well. He continued to work while getting his treatments, but this week because of fatigue, he went into work a couple of hours later. I hope this will help Greta going into the treatment! Who was the surgeon at UCSF? My husband's doctor was Chris Freise. He was fantastic! We too were very concerned about the CT after surgery. His was clear as well but the really good news was that the spot in his lung had not changed. The sarcoma specialist from UCSF said this was especially good because after a surgery your body sends out messages to the tissues to heal and grow. Cancer loves this too and you could easily have a lesion double in size in just a few months. He was very encouraged by there not being any change in size. Hopefully it is not a cancer! Congratulations on the clear CT!

I was wondering if Greta would mind telling me what type of work she does? Mike has worked at one of the Bay Area oil refineries for over 20 years. Apparently the type of chemicals he could be exposed to don't cause this type of cancer. Just curious, I guess we always wonder why and maybe there is no answer to that!

Cindy (Mike)

LMS
Hi, this is Greta here. I was wondering how you and and your husband are doing. I year goes by fast and I really have tried to the whole cancer thing. My 3 month ctscan is due the first of June, 1yr after my surgery. I hope all is good news for you and your family' Try to keep you updated. Greta (larry's wife) Did Larry ever tell you I worked in the food industry in my early years and for the past 10yrs, I've done office work.

bsunshine315 said:

I am one in a million too.
I am one in a million too. Just diagnosed w leiomyosarcoma in April. I had an emergency hysterectomy and when they did biopsy on the tumor they gave me the news. I am very scared and waiting results of my PET scan.

lung cancer Leiomysarcoma i
hi every body god still have me here im sorry i havent wrght to you i been takeing care of my grandkids takeing them to school i guess gods has me here still for a reson i go to get chick every 6 months so ill go on the 17 of this month aug,17-11 hope everything is ok will i hope every wone is doing ok just keep faith in god. aug,8-11

hope650 said:

I'm 1 in a million too.
I hope this finds all of you doing well.
I was just diagnoses with stage 1 ULMS. I had a complete hysterectomy on Jan. 6th & they found ULMS within a fibroid tumor. They think they "got it all". I've been to see an OB/GYN Oncologist who has order a CT scan of my chest & abdomen, but as of yet do not know if it has spread. They think I will have to have Taxotere/Gemzar chemo for 6 rounds. To say the least I am scared. I 'll be 54 on the 20th of February & to say the least this was not the birthday present I had in mind.
I've been reading a lot on the http//:blochcancer.org website. Very pro-patient & power of positive thinking & fighting with all you have.
If anyone is still out there posting, would love to hear from you.

My Fiancee has been diagnosed with Leiomysarcoma.......
Hello room. I am a 39-year old male that has been in a 5 year relationship with my girlfriend/fiancee. For years, my fiancee has been battling with her fibroids. They have been painful but the pain would eventually go away. Well last year, like in February, we noticed that she continually had discharges and we tried everything and nothing seemed to work. By August of 2011, I first noticed that her little belly was beginning to protrude. By September 2011, the bulge was getting bigger and then it was beginning to push on her bladder. The pain was worsening and she finally decided to have her fibroids removed. Her OBGYN doctor looked at her uterus and made the recommedation that she get her whole uterus removed because the fibroids she had were so big. She agreed. She had the surgery in January of this year and found out that the fibroid we thought was present, had actually degenerated to Leiomysarcoma. We sat in the Oncologist office and they just seemed soooo grim to me.

The Oncologist ordered an emergency CT Scan of her Pelvic, Stomach and Chest area, as well as all of her surrounding organs. To our surprise they found nothing. However, they want to treat this aggressively so she is now started her 1st leg of a 6-month chemotherapy treatment.

My question is this......what is the long term prognosis for this type of cancer? I am sooo devastated. I cry silently and this is soooo hard on me. I love my fiancee soooooo much and I cannot picture my life without her. Can someone help me with any advice on the o

mecca1961 said:

Just wanted to say hi. I have read that you would like to connect with someone who has had leiomosarcoma. Hope you are doing well. Please email me if you would like to hear from me. I have been cancer free for over a year now. I take it a day at a time and definitely appreciate each day and every moment.

My sister and LMS
My sister just underwent surgery to remove a large mass which seemed to originated on the right ovary. She had surgery Sept. 6th and is healing slowly but surely it was a major surgery.

Today she was told she has LMS but the thing is they left in her uterus and left ovary are there different type of LMS.

We go Friday to get her treatment plan and more details. She is only 30yrs not married and not children but has a VERY loving boyfriend that is standing my her side through all this.

I know we need more details yet but she is really scared. She has an awesome support system family and friends.

Thanks in advance for prayers and or any input you might have.