Leiomyosarcoma
Comments
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My Sister and LMSmomoftrips said: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.
There are different types of primary tumors in LMS. It affects the smooth muscle tissue, so your sister's primary tumor could have been on the overy that was removed. For my mom, it was her uterus. Unfortunately for us, she was diagnosed at stage IV, and the cancer had already metastisized to her lungs. By the time she died, almost two years after her diagnosis, the cancer had spread to various organs in her abdomen.
Stay positive, and remember that your sister and your family are your best patient advocates.0 -
I just joined the 1 in a million clubhope650 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.
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.0 -
My Dad, age 76 has epitheliod LMSJott said:I just joined the 1 in a million club
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.
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.
Doug0 -
Leiomyosarcoma
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.
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stage IV Leiomyosarcoma doesn't mean the end is nearMo64138 said: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 oI 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.
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Brian,Brian_in_Cali said:Wtf? Seriously? - Just got back from Dr. office
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...
I would really like toBrian,
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.
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need a little help with thisjerimoore said:stage IV Leiomyosarcoma doesn't mean the end is near
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.
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.
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Lmshope650 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.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.
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Advicejerimoore said:stage IV Leiomyosarcoma doesn't mean the end is near
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.
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.
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jerimoore said:
stage IV Leiomyosarcoma doesn't mean the end is near
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.
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.
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Curcumin - MD Anderson Trialwahine56 said:Leiomyosarcoma
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.
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
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Stage IV LeiomyosarcomaMarissia said:Curcumin - MD Anderson Trial
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
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
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Similar diagnosisDJK said:LEIOMYOSARCOMA
I was diagnosed with LMS of the kidney in July 2010. Had kidney removed and they say they got it all no treatment for that. In Sept I went for a chest CT and they found about 20 spots between my 2 lungs, as of right now I don't have to do anything because the spots are too small to biopsy. I go back in April for another CT Boy the waiting is starting to get on my nerves. This is my second bout with cancer I had hodgkins lymphoma when I was 19. Now at 55 it's not as easy to go through it again. I hope you are doing well and you are in my prayers DarlaHi.
My name is Nikki and I too was dx with Hodgkins when I was 19.
On May 15, 2013 had surgery for an enlarged retroperitoneal lymphnode.
The result was a leiomyosarcoma from the radiation treatments I received at 19. I tried two cycles of Gemzar/Taxotere but after follow up scans showed mets to liver and original site of lymphnode the treatment changed.
I am now starting a regimen of Adromycin which you as well might have had at 19.
The treatments are kicking my butt, but I get back up again.
Good luck with your treatment.
All my best.
Nikki
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LMS
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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Stage IV Leiomyosarcoma is not a death sentence!jerimoore said:stage IV Leiomyosarcoma doesn't mean the end is near
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.
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!
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leiomyosarcomawahine56 said:Leiomyosarcoma
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.
I'm sorry to hear about your husband but I really need to know how you are doing. My husband was told in 2009
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