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Leiomyosarcoma

Melodyyy
Posts: 5
Joined: Mar 2006

I'm one in a million. That's the incidence of my sarcoma. Needless to say, I don't have anyone to share my cancer experience. There are 650 of us in the USA this year. How to make contact? At least people in this chat know what its like to have a rare cancer! Hello!

chrissygenovese
Posts: 5
Joined: May 2010

Anyone with LMS who have had a transplant in the past, please contact me at chrissygenovese@hotmail.com ... I ask that you contact me at this address because I am not able to log on here sometimes for a while. I will receive mail at my personal address much quicker than here.

My cousin, Anthony, is 20 yrs old and had a heart transplant 3 yrs ago on July 4th. He has just been diagnosed with this rare cancer (tumors both on his lung and on his liver). My aunt, his mother has been living at the hospital, Cleveland Clinic, where he is being tested to see what the prognosis is going to be, considering he is and has to be on immune suppressants. Difficult situation it is when you have to be on these drugs...the body cannot and doesn't have the ability to fight off anything it is presented with.

Anyhow, if anyone who has experienced this, please help by contacting me at the above email to let me know of your situation and where you stand with this whole thing. Any information that may help would be greatly appreciated, and any positive feedback would be a relief at this point, for our family is torn apart over this situation.

Thank you in advance for your help, and God bless! Hope to hear from someone soon!

Chrissy

chrissygenovese
Posts: 5
Joined: May 2010

Anyone with LMS who have had a transplant in the past, please contact me at chrissygenovese@hotmail.com ... I ask that you contact me at this address because I am not able to log on here sometimes for a while. I will receive mail at my personal address much quicker than here.

My cousin, Anthony, is 20 yrs old and had a heart transplant 3 yrs ago on July 4th. He has just been diagnosed with this rare cancer (tumors both on his lung and on his liver). My aunt, his mother has been living at the hospital, Cleveland Clinic, where he is being tested to see what the prognosis is going to be, considering he is and has to be on immune suppressants. Difficult situation it is when you have to be on these drugs...the body cannot and doesn't have the ability to fight off anything it is presented with.

Anyhow, if anyone who has experienced this, please help by contacting me at the above email to let me know of your situation and where you stand with this whole thing. Any information that may help would be greatly appreciated, and any positive feedback would be a relief at this point, for our family is torn apart over this situation.

Thank you in advance for your help, and God bless! Hope to hear from someone soon!

Chrissy

Brian_in_Cali
Posts: 1
Joined: Aug 2010

wow... im..uhhh... holy crap...

i had a little bump on my leg, regular dr. said "its a cyst" referred me to a general surgeon, she looked at it and said "its a cyst, lets cut it out next week"... had the surgery... went back to get the stitches removed, and she sat me down and told me "we need to operate again, and remove the surrounding tissue because.... drumroll...it wasnt a cyst.

im sitting here with a copy of the pathology report for my "cyst" - Leiomyosarcoma.

I feel like i just got kicked in the head and the gut at the same time...
I have a wife and an 8 year old girl, and a life i rather enjoy...

Dont even know what to say...

So, Ive got an appt. for monday to have the tissue around the original operation site removed and a vague impression im going to need to get some MRI's and some additional tests etc...

I have no idea if theres more, elsewhere, or if this was it...

wow.. freakin lost right now... I dont even know what to think... I mean, how do i know what stage?... what the hell metastats is?... jesus... havent been in a dr.s office in 20 years... and THIS?

If i am really reading these boards right, i have a form of cancer that is seriously one in a million?

WTF???

jesus... im sorry.. hope i dont sound like lunatic... im just floored at the moment... started looking this up and landed here and my god.. if i ever have needed to vent it was now...

filimu's picture
filimu
Posts: 74
Joined: Aug 2010

breast cancer survivor, but my best friends' sister was recently diagnosed with leiomyosarcoma, so I went looking for info on it, both for myself and my friend. This web site is very informative, written by doctors, but in clear "English".
My prayers and very best wishes to each and every one of you.

http://www.leiomyosarcoma.info/

gretalala
Posts: 4
Joined: Sep 2010

My wife Greta go this kind of sarcoma and had it removed from her abodomen. It touched the line between the bladder and kidney. She had the tumor removed June 4, 2010 and is doing chemo. It has been extremely life changing for both of us. She went to UCSF for the surgery. We went vegan after reading the China Study in that veggies don't feed cancer and animal protein does per the authors massive research at Columbia University. Also, saw the movie on Netflix about Sexy Cancer where the lady went into all of the alternative treatments along with the regular treatments.

Larry

Ginge
Posts: 7
Joined: Sep 2010

Hi, saw your post, my husband had a tumor on the renal vein coming out of his left kidney. They didn't know positively that it was leiomyosarcoma until they had the tumor out. His surgery was April 14, 2010 at UCSF. At the time his surgeon said he had been unable to find a case history of someone with this cancer in the same area! He just finished 5+ weeks of radiation. We were told that this would not affect his survival rate just managing the cancer trying to make sure it wouldn't come back to this same area. My husband is playing golf as I write, so he is doing well right now. He is still in alot of pain from the incision. I am scared every day worrying about it coming back. He actually has a spot in his lung but it is too small to do anything about. They can't even biopsy it. It may not be cancer. We saw a sarcoma specialist from UCSF that we paid for because our health insurance won't pay for us to see him as a patient. But it was on his advice that my husband had radiation. I hope your wife is doing well thanks for info you posted I am going to try to get that movie you mentioned.

gretalala
Posts: 4
Joined: Sep 2010

That was a shock to see a response so quick, especially since the situation is so similar. I am very hopeful for your husband. Greta and I are on a natural high tonight. She got a CT scan today. 4 months after the operation to remove the tumor, it is clear, and the tumor hasn't come back. I am glad to see you are interested in the movie. The lady who made it is still writing a blog on Utube. The China Study book is very interesting also, especially the chapter on the on/off switch for cancer. The author has some videos on Utube. I don't know if our going vegan helped but it sure didn't hurt. We prayed and went vegan and got chemo (gemcitibine and decetaxel) and then she wil go to radiation. I hoope the best for your husband and all of the others writing in. This is very difficult for all of us, but the movie takes a very entertaining and informative approach to this issue. Let's keep in touch. We are at gretaal@pacbell.net.

Larry and Greta

Ginge
Posts: 7
Joined: Sep 2010

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)

gretalala
Posts: 4
Joined: Sep 2010

Hi Cindy and Mike,

Her surgeon was Dr Nauracura, probably spelled wrong. The follow up Dr at UCSF seemed good too. I can't remember his name now and Greta is sleeping, so I didn't ask. Since she went on chemo she started working less and less and now is working slightly less than 20 hours per week. She works in accounting in the Mental Health dept of Mendocino County. Luckily they have allowed her to be flexible with the hours. We have also been wondering where the chemicals that caused the tumor were from. She has not worked around chemicals that we can think of. I have read several books about this since her diagnosis and get the impression that the modern world we live in has quite a few carncinogens. That is one reason we started getting bottled water and organic food and go vegetarian since the diagnosis. The Dr. at UCSJ said the tumor could have returned in 3 months. Also, they said that without treatment after surgery there was a 50/50 chance that it wouldn't return and then a 15% even better chance it would stay away with chemo and radiation. She was gung ho to be here to watch the grandkids grow up, so we are trying anything to improve the situation. Thank God so far so good. The follow Dr. at UCSF said that they didn't know the cause, it doesn't show up in geographic areas, it doesn't appear to be hereditary, so it is of origin unknown. It is a bit lonely out here, with such a rare cancer that no one real knows a whole lot about. I have searched the internet and have found a lot of info. It appeared that the chemo now is much better for leiomyosarcoma than what they used prior to about 2002. That is when they were starting the trials for the chemo that they use now for it.

Larry

Ginge
Posts: 7
Joined: Sep 2010

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

kwilli6422
Posts: 1
Joined: Jan 2011

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

Ginge
Posts: 7
Joined: Sep 2010

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.

gretaal
Posts: 3
Joined: Sep 2010

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.

Ginge
Posts: 7
Joined: Sep 2010

deleted

4girls4me
Posts: 4
Joined: Sep 2010

I felt the same way when at 41 (just 6 months ago) I had a small lump removed from the back of my hand only to find out it was LMS! Yup..same boat. I was immedialtely sent from our small town about 2 hours away to Mass General in Boston, MA where I meet my team of Sarcoma Specialists! They told me I was the only case they knew of that had LMS in a Small vein in the hand!

I underwent 5 weeks of radiation there and then surgery to remove wide margins and any cancer that was not removed. Good news! The cancer was gone. I spent the next 8 weeks recovering and undergoing hyperbaric oxygen treatment daily for a non healing incision on my hand from the surgery. I am currently undergoing OT to try to regain full use of my hand and tomorrow I return to work as a physical therapist after a long 5.5 months!

This week is my first 3 month scans and check up. I feel great otherwise. Yes, I am still scared. Scared of this stupid cancer coming back, but I have learned I can handle anything and I have a wonderful support system , including my husband and 4 little girls all of who need me here!

Just know you are not alone and having LMS is NOT a death sentence as I had first thought when I was diagnosed. My thoughts and prayers are with you as you begin your fight!

Marvusman's picture
Marvusman
Posts: 22
Joined: Sep 2010

I have been dealing with Leiomyosarcoma since 2009 when I was 27. I'm one of the youngest people to ever have a whipple surgery for cancer it is usually a surgery for Pancreatic Cancer. I had a recurrence recently and hadto have another surgery where they cut through my already healed scar. I am recovering now and awaiting the start of GLEEVEC most likely. The pathology has them beating their heads against the wall as I have a hybrid tumor which is a cross between Leiomyosarcoma and GIST tumor. It also has a small cholangiocarcinoma attached to it. So now I am battling 3 different cancers. My original tumor was 13 cm the size of a grapefruit! I was also high grade with a high mitotic index and was located deep within my abdomen the worst location. Everything was and is against me yet somehow I keep dodging bullets and also have been lucky enough to avoid metasteses. I'd like to chat with anyone who has either had an abdominal Leiomyosarcoma or a whipple surgery. It's nice to compare notes and see if what I am experiencing is accurate.

gretalala
Posts: 4
Joined: Sep 2010

Please see the comments above from gretalala. Much the same as Marvusman for my wife Greta. She had partoneal leiomyosarcoma, which is in the abdomen, but touched the tube that connects the kidney to the bladder. It was a tough surgery in the removal of the tumor to get margins, but they did it. It was removed June 4, 2010 and she chemo after that.

Tatt2tina
Posts: 1
Joined: Feb 2013

Brian,

I would really like to know how you are doing since your diagnosis a few years ago? I have experienced something very similar to you when I was diagnosed in 96 with cutaneous LMS on the calf of my rt leg. Surgical remission for 12 years. In Oct of 2008, diagnosed once again with cutaneous LMS on my right outer thigh. Once again, surgical remission. I would say I am one of the VERY lucky ones, but I'm no fool either and remain diligent and try to stay as healthy as possible. I've often wondered 'why me'? (as there is cancer history in my family but nothing like this)....I joined this site for part of that reason. I would give anything to find someone that has experienced this as I have. I know I have alot to talk about and to do yet. I feel just mostly alone.

I hope you have done well and your live has been given back to you and promises made have been kept.

I want to live and I want to connect.

angel18
Posts: 1
Joined: Nov 2010

diaganosed 6 years ago following a hysterectomy , removal of fibroids and tumor discovered. clean for 2 years and then metastasis to the lungs and subsequently now, to the liver, pancreas and spine...As we all know this rare disease has limited treatments.. In my case I have had 9 protocals, repeating gem/tax 2 x and Temodar 2x (off label drug for brain mets). My primary oncologist is Dr. Martee Hensley at Memorial Sloan Kettering in New York. Dr. Hensley had given me the names of the top specialists in leiomyosarcoma.

Dr. James Butrynski/ Dana Farber Cancer Center/ Boston
Dr. Scott Okuno/ The Mayo Clinic, Rochester Minnesota
also at MD anderson speicalist and Univ of Michigan

Generally, they use the drugs with most success for targeted area first and then when they do not work go to a drug with less success. there are also clinical trials and least course of effectiveness are phase one trials. There is also radiation and RFA ( radio frequency ablation)and surgical removal of tumors with clean margins It is important to do research and seek help wherever.

hope this information is of help

lupe
Posts: 6
Joined: Mar 2009

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
Posts: 8
Joined: Dec 2010

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.

Ginge
Posts: 7
Joined: Sep 2010

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
Posts: 8
Joined: Dec 2010

How are you? And how is your husband? If you dont mind me asking,how did he handle the radiation?Im going to be starting treatments in a couple of weeks and am a bit nervous.Will Mike be doing any chemo at all? Where are you located and is treatment being done at a sarcoma center? I wish Lupe would post again. Id like to know how she is doing.Will be praying for Mike and you.

After reading more of the discussions,some of your posts answered my questions already.

Ginge
Posts: 7
Joined: Sep 2010

Dear mb,
Sorry I didn't check the site until now, Mike did wonderfully well with radiation. He didn't miss a full day of work! The last week he went in late twice just from fatigue. He had a little bit of nausea no skin irritation. We are located in Northern California about 1 hr away from San Francisco. We saw a sarcoma specialist at UCSF once, but our health care provider isn't sending him back at this point. He is doing really good, and is getting CT scans every 4 months. He just had one last month. We are watching a "node" in the right lung but it hasn't changed at all since they found it last February. Everyone says that is a really good sign. I hope you are doing well. Where was your cancer? Are you going to a sarcoma center? Let me know how you are!!! I really want to find someone who has beat this stuff! Thanks for the prayers we all need them!

Teacherof3
Posts: 2
Joined: Jan 2011

Support for those diagnosed with Uterine Leiomyosarcoma can be found at
http://uterine-leiomyosarcoma.blogspot.com/

mb112660
Posts: 8
Joined: Dec 2010

Thank you SOOOO much!

dodot
Posts: 14
Joined: Dec 2010

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

Thanks

mb112660
Posts: 8
Joined: Dec 2010

I tried to email you at the address you provided and received a failure status notification. I copied and pasted the address from your post,is it correct? You can contact me at mb112660@hotmail.com if you would still like to talk to me.

bsunshine315
Posts: 1
Joined: May 2011

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.

lupe
Posts: 6
Joined: Mar 2009

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
Posts: 1
Joined: Feb 2012

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.

Mo64138
Posts: 1
Joined: Feb 2012

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

I miss Pat
Posts: 1
Joined: Jun 2012

my wife patricia was diagnosed with LMS in 1995 about 9 months after our wedding. It was the most devastating news we could have heard, as there is no cure for it and it is terminal. please Don't give up my friend, as a good attitude and positive thinking goes a long way with dealing with a disease such as this. At that place in time when there was no cure, but we tried chemo , radiation and many clinical trials so that maybe someday there would be a cure. with god close to our heart we were told we would not make our first anniversary which was only a couple months away because her cancer had metastisized throughout her body after a misdiagnosis. with god by our side we not only made our anniversary that year we made three more after that. she passed in july of 1998.

This was not meant to sadden you but inspire you to love her with all you have , there will be time to grieve later, live everyday to the fullest and treat her like the queen she is. Wake up everyday and tell her you love her and make that the last thing you say when you go to bed at night. I will pray for you.

Ken

jerimoore
Posts: 1
Joined: Feb 2013

I was diagnosed with stage IV leiomyosarcoma  4 1/2 years ago.  I am still here and doing well.  I first had the cancer removed then in 8 weeks it had matastesized in my abdomen and lung.  I have have been cancer free for almost 4 years .  Keep praying and listening to your oncologists.

 

cspalmer
Posts: 1
Joined: Apr 2013

hi, my name is chris i live in nc .i am 38 years old found out on monday i have leiomyosarcoma.my mind could not understand why and how.i had a mast removed from my leg,thought it was just a fatty tumor.turned out not to be.just getting in to this i do not know alot until the doc gets started with testing.i was blessed by god 2 years ago with a gift.my baby girl she is my life.my faith is with god but i am sarced to death.can you give me advice on what to expect as i start this. 

kayhope
Posts: 2
Joined: Apr 2013

Hello. I read your post and I am just hoping to get some advice and encouragement. My dad was recently diagnosed with stage IV leiomyosarcoma; the tumor started in his stomach. It is relatively small according to the doctors, but it has metastasized to his lung and a muscle in his leg. He will be beginning radiation consultation (U-M) this coming Friday. He seems to be afraid of getting chemotherapy. He is 79 years old, but believe it or not, he was never really seriously ill until this happened. I am wondering about certain drugs I've been reading about such as Votrient and Trabectatin (I may have spelled that wrong.)

We tried calling the Cancer Center Treatment Centers of America, but we didn't have any luck because of Dad's insurance - (Medicare is primary). Should we seek a third opinion? Any advice you can offer would be great. Thanks.

kayhope
Posts: 2
Joined: Apr 2013

This message is for JERIMOORE: Once again, I am seeking advice and encouragement. My dad was recently diagnosed with stage IV leiomyosarcoma; the tumor started in his stomach. It is relatively small according to the doctors, but it has metastasized to his lung and a muscle in his leg. He will be beginning radiation consultation (U-M) this coming Friday. He seems to be afraid of getting chemotherapy. He is 79 years old, but believe it or not, he was never really seriously ill until this happened. I am wondering about certain drugs I've been reading about such as Votrient and Trabectatin (I may have spelled that wrong.)

We tried calling the Cancer Center Treatment Centers of America, but we didn't have any luck because of Dad's insurance - (Medicare is primary). Should we seek a third opinion? Any advice you can offer would be great. Thanks.

optipro1's picture
optipro1
Posts: 2
Joined: Jan 2014

Jeri;

I have gastrointestinal leiomyosarcoma and in December celebrated 1-yr of stopping the cancer's growth. I am glad to see you still doing well because I now have a milestone beyond the few months originally given! I hope that other LMS survivors can get strength and encouragement. Stage IV LMS is not a death sentence!

Jott
Posts: 1
Joined: Nov 2012

I just joined and read your post. So how are you doing after 10 months? They say things are too far along for radiation or chemo and I will find out today about surgery options. I have made a list of things to see. Fortunately I have done most all of the things I wanted to do, but there are still a few things on my to see list. Of course I may have all kinds of time.
Anyway, let me know how things have gone for you.

N1894b
Posts: 1
Joined: Dec 2012

8 weeks ago, he had a 16 cm tumor removed from his stomach that had grown through the wall of the stomach, plus 6 inches of his colon and 7% of his liver. He was healthy as a horse, and had been walking 5 miles per day before surgery. The classification is stage 4. In JAnuary, he will begin chemo. There is no known evidence of cancer, but 5 nodules on the lungs are too small to biopsy. He has started antidepressants.

We have. Rough journey ahead.

Doug

MeChicago's picture
MeChicago
Posts: 4
Joined: Mar 2013

Hello Hope,

How are you doing?  How did you handle chemo?  How was your scan?

I had my Surgery 1/30/13 and tomorrow have my 2nd of my 4th round of chemo.  Receiving same chemo, except just Gem on week one as my 1st treatment left me at .500 of white cells.  They had to skip the 2nd treatment that round. I will have radiation after chemo and then should be able to return to my job which I miss!

I hope to hear from you.

wahine56's picture
wahine56
Posts: 3
Joined: Jan 2013

I was diagnosed Sep2011 after a hysterectomy for fibroids.  After a PET scan, I was told I was stage IV with mets in my lungs, liver, and back.  Have had radiation, chemo and am currently taking Votrient. Wish I had found this site a year ago.  My husband had a complete breakdown with my diagnosis, and committed suicide Jun2012.  He could not deal with the comments from the doctor saying I would be gone in months, there was no cure.  Stay away fromUCI. They are the worst oncologists in Calif.  It has been 17 months and I am still alive and doing fairly well.  The depression and fear get to be overwhelming sometimes, but what is there to do but keep fighting?  Have been encouraged reading this site. Thanks for all that have shared their stories.

Marissia
Posts: 1
Joined: Oct 2012

My daughter Marissia (49) was diagnosed with stage IV Leiomyosarcoma in September 2012 as the result of taking a drug to treat a kidney disease.  What a bummer!  Her kidneys are fine...but then the cancer.  Lesions are in her pelvic area and 2 masses are on her liver. However, her liver functions fine Praise the Lord.  She underwent 10 radiation treatments on her pelvic to address the lesions and to keep the pelvic from being compromised and breaking.  She is currently undergoing chemo treatments through Mayo Clinic.  The cancer activity level is 50% less than initially and a spot that was on her lung is now gone.  She monitors her diet very carefully, eating mostly organic, and minimal carbohydrates of any sort because her Oncologist stated that cancer feeds on carbohydrates. She misses the bread and pasta... She is also taking 8,000 mg. per day of Super Curcumin with Bioperine after reading about the success MD Anderson Cancer Hospital had with this natural treatment.  It does keep her immune systems up, as her readings are very high. It can be purchased from Physician Naturals. She also does some daily juicing of veggies, takes  Vit D and spends daily time in the sun, and takes an assortment of several other vitamins. She incorporates parts of the Budwig Diet, e.g. Cottage Cheese, blended with Flax Oil.  What a strange thing but a lady at our church has a sister who followed this diet when diagnosed with Breast Cancer and is cancer free, so what the heck she loves cottage cheese and the flax oil once blended is fine. You can find information on the Budwig Diet on the internet. Once she started chemo she experienced "radiation recall" which causes inflammation in her pelvic and resulting painful discomfort. They add Prednisone to her Chemo Cocktail and that helps control the radiation recall symptoms.  With all that she is doing both naturally, and Mayo's chemo treat protocol, the cancer at this time is not progressing and we are hopeful that the next CT PET Scan will continue to be promising. Initially the Doctors gave her 2 years to live, but we got a second opinion form MD Anderson in Houston, and they said if she is diligent, watches her diet and maintains a positive attitude they were very confident the cancer could be kept at bay for 10 years or more. We are Christians so prayer and our faith in the Lord plays a big part in keeping us strong.  We know he has a plan.  She lives each day to its fullest and is able to travel, shop and do all the things a normal person would do.   I hope I have given you some ideas of other things you might consider to fight this awful disease and keep it at bay.  Please share anything you are doing that may be helpful.

God Bless You and Be Encouraged,

 

Marissia' Mother  

lmsuk
Posts: 1
Joined: Sep 2013

I am from India. My mother was diagnosed with Stage IV Leiomyosarcoma in April 2013. It all started in the Jan 2012 when she started experiencing mild flank pain after every meal. Doctors could not tell the reason for the pain until the condition started getting severe. The intensity of pain increased and by July 2012 the pain was unbearable. Until then, the root cause was not diagnosed. The two ultrasound scans came out to be normal. In July 2012, she was taken to emergency room in the hospital due to excruciating pain and the CT scan there revealed an 8 cm adrenal mass above her right kidney. Doctors suspected cancer and a 4 hr surgery was performed in August 2012 where the mass was removed along with right 11th rib and the adrenal gland. The biopsy report showed Leiomyosarcoma of adrenal gland.

Post surgery, doctors recommended a 3 month follow up schedule of CT scans. The scan in Dec did not show signs of recurrence but in April, she started experiencing pain in the rib. The PET findings showed that the cancer had spread to pelvic regions and bones and the removed tumor had grown again now measuring 2.7cm.

Her chemotherapy then started in May 2013 (Gemcitabine + Docetere). After 3 cycles, the activity levels reduced by 50 %.                                                                                                        

Her 5th cycle is going on currently. I wanted to know if anyone has any alternative treatment to recommend because the chemotherapy is only palliative.

Thanks

davor14
Posts: 1
Joined: Nov 2013

Looks like I have made the LMS club as well.  I was diagnosed Nov 12 with LMS in lower right leg after 2 years thinking it was something else.  I had an amputation Jan 2013 below right knee.  Several nodules then were identified in my lungs but were too small to biopsy.  Finally had biopsy done in September and found out 1 month ago that LMS had spread to my lungs and lymphatic system, Stage IV.  My sarcoma specialist does not see any value in further scans and has discharged me back to my GP.  Chemo or radiation are not recommended at this time either.  The nodules are slow growing and have been minimal growth over the last year.  Seems to be that the Dr's are ready to write me off and send me home to die.  I don't think I should give up just yet.  My spouse has been fiercely supportive and my family has been stunned.  We are in Canada and am looking at heading back east to be close to family.  Spouse has identified a diet regime to help combat the cancer.  I feel somewhat healthy now, I know the disease cannot be cured, just hopefully managed.  I am thinking that with CT monitoring, maybe radiation, RFA, or surgical removal may provide some hope.  I do feel that all is not over from reading the posts here.  Many people (eg, exnavychief) have survived years with good quality of life.  Main thing I believe is to keep a positive attitude, which is extremely difficult right now.  Luckily I have my spouse and my faith.  My trust in doctors is somewhat stretched right now.  Has anybody had treatment of LMS which metastasized to the lungs ?  Any info or advice would be appreciated.

Regards,

Dave

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