Leiomyosarcoma
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How's your husband?morecoffeeplease said:Sarcoma Centers and Leiomyosarcoma diagnosis
My husband is going through his second occurrence of LMS. The first tumor was found and removed from his small intestine, but not until after they thought it was everything from a bowel blockage to cardiac problems to scar tissue from a previous surgery. He was bleeding internally because the tumor had grown to 9 cm before they finally did an MRI an found the mass. The good news is that they were able to do a resection and get clear margins, and he was blessedly cancer-free for 18 months. But his last scan showed a small spot on his liver that turned out to be that old devil again. Our local oncologist recommended immediate surgery but this time we opted for a second opinion at Memorial Sloan Kettering since they are one of the few sarcoma centers in the country. This was the best decision we have ever made.
We saw Dr Yoon (surgical oncologist) and Dr DeAngelo (medical oncologist) and they both recommended a minimum of 2 and up to 4 rounds of Gemzar and Taxotere depending on hubby's ability to tolerate the chemo. Here's why: once LMS has metastasized they know that there are undetectable microscopic cancer cells that have moved from the primary site to the new location. The chemo is intended to kill these micro cells and ideally shrink the tumor prior to the planned surgery. As Dr Yoon said, it would not be good to have major surgery only to have the cancer show up somewhere else before you even have a chance to heal. My husband will get a scan after the end of round 2 (next week) and if the tumor has grown smaller, or even stays the same, we'll know the chemo is working. The odds are 1/3 shrinking tumor, 1/3 no change in size, 1/3 the tumor continues to grow (not what we want to hear).
This is why you have to go to a sarcoma center for this cancer. Most oncologists have never seen LMS and the treatment is evolving. The docs at the sarcoma centers are at the forefront of research and aren't afraid to take aggressive action. We were ready to drain the retirement account and go to whereever we could get the best treatment, since our goal is to CURE my husband. We may not be successful but I would hate to regret not trying everything. Fortunately he can get his chemo and scans done locally and our oncologist is working with the MSK docs. But the surgery will be performed by Dr Yoon at MSK.
Here's another thing they told us at MSK: the survival statistics that you may read online are unreliable simply because this is such a rare disease there isn't sufficient data to have good statistics. Every patient is different and as long as the tumor is operable, survival is possible. LMS is a scary diagnosis but where there's life there's hope.
So good luck to all of you and say a little prayer for my husband.
I found out that my hysterectomy had removed a leiomyosarcoma in my uterus In Sept 2015. My Dr. at MD Anderson said that he best thing I could do now is hormone therapy since they cannot detect any spreading & that they simply don't know if chemo would prevent recurrancE. I get scanned regularly. I agree with you about not reading too much about this rare cancer, and going to a sarcoma center. Prayers for you & husband. Becky
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Update on hubby's LMS journeyScubagirl608 said:How's your husband?
I found out that my hysterectomy had removed a leiomyosarcoma in my uterus In Sept 2015. My Dr. at MD Anderson said that he best thing I could do now is hormone therapy since they cannot detect any spreading & that they simply don't know if chemo would prevent recurrancE. I get scanned regularly. I agree with you about not reading too much about this rare cancer, and going to a sarcoma center. Prayers for you & husband. Becky
Update on Mr Morecoffeeplease: After 3 rounds of gem-tax chemo his liver tumor showed slight growth so in Sept 2015 Dr Yoon at MSKCC removed the 6 cm tumor surgically and said he got good clean margins. Unfortunately the chemo really wiped hubby out so it took somewhat longer for him to recover from surgery. Had follow up scan in Feb 2016 and they detected a 2 cm "something" on his abdominal wall. Dr Yoon was surprised since he said he wouldn't expect hubby's LMS to show up there, maybe its scar tissue?? , but scanned him again 6 weeks later and sure enough, it had grown. Thinking was that instead of a traditional "met" that this was a "leakage" from earlier liver surgery. We were told that although the tumor is small and operable, there was a randomized clinical trial underway testing new chemo combinations (doxirubicin and olaratunab) that hubby could join in lieu of surgery. Lots to consider. Called many of the wonderful experts we have encountered on this journey (especially Annie and Mitch Achee from the National LMS Foundation), got names of other oncologists for their opinions, and finally decided to go with the surgery instead of the trial. One of the experts we spoke with said that there are a lot of new treatments being tested and if hubby's LMS returns and is inoperable, there "will always be another clinical trial". Had surgery 3 weeks ago. Major organs were unaffected and since tumor was surrounded by sub-abdominal fat tissue they were able to get good clear margins without having to excise his colon or liver. This is the ONLY time being a bit overweight was a good thing!! Returning to MSKCC next week for follow up. Will continue to vigilantly scan every 3-4 months but so far so good. (First diagnosed in 2013, 9 cm tumor in small intesting; NED for 18 mos; 3 rounds of chemo followed by 2nd surgery to remove new liver met; 6 months later surgery to remove 4 cm tumor on abdominal wall.)
Everyone's journey is different. I am glad hubby is still here to share my life and everlastingly grateful to both the experts at MSKCC, and the advocates in the LMS community. The best thing I could recommend to anyone struggling with this diagnosis and wondering what to do is this: GO TO A SARCOMA CENTER IMMEDIATELY! and... REACH OUT TO THE LMS COMMUNITY FOR SUPPORT AND ADVICE. This is very rare disease. The docs at the sarcoma centers (we LOVE MSKCC) have experience and know what the latest treatments, protocols, and trials are. Oh yeah - one other thing. I constantly refer to this as being "our" diagnosis and "our" treatment. As so many of you know, the spouse/caregiver is as much a part of the process as the patient. Where there is life there is hope and we are not about to stop living.
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sarcomashare_hope said:hi
I am new to this forum and been diagnosed with leiomyosarcoma in april 2011 and again in october 2013 in liver.I have had partial gastrectmy and nothing for liver mets yet.Its been a rollar coaster ride from last two months as doctors here in Australia still working out the best treatment.
Hi hope, I to am in Australia nsw, I have the same sarcoma it was in my small bowel, so far I have had surgery, and they think they have the lot wont know till next petscan in 3 weeks, it spread to the liver one small , just hoping it hasnt spread anywhere else. I still dont understand it that well. This tuesday iam off to sydney to see if I should have chemo. Hope you are doing well. Rhonda
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Fourth time around
I am struggling with my husband's diagnosis of a fourth occurrence of his LMS. He was scheduled for a follow up scan at the end of September but had been feeling lousy and went to see his PCP. PCP ordered a scan thinking gallbladder problems. I wish. Got a call today saying spots on liver and lungs. Going back to MSKCC this Friday for another scan and visits with his specialists, but we are both sick with worry. I feel like I have been punched in the stomach. The nasty thing about this disease is that you just start to feel like maybe life will be back to normal - and then WHAM - it comes back. My family and friends are all telling me that I am so strong but this time I am not feeling very strong. I will keep a happy face for my hubby's sake but I am sick inside. We've been down this road so many times that I know what to expect, whether its chemo or surgery, but I am just so tired of it all. And I know he is too. Anyhow, thank you for letting me vent. For some reason it feels a little better just typing these words on the screen.
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Hi-my wife was diagnosed withmorecoffeeplease said:Fourth time around
I am struggling with my husband's diagnosis of a fourth occurrence of his LMS. He was scheduled for a follow up scan at the end of September but had been feeling lousy and went to see his PCP. PCP ordered a scan thinking gallbladder problems. I wish. Got a call today saying spots on liver and lungs. Going back to MSKCC this Friday for another scan and visits with his specialists, but we are both sick with worry. I feel like I have been punched in the stomach. The nasty thing about this disease is that you just start to feel like maybe life will be back to normal - and then WHAM - it comes back. My family and friends are all telling me that I am so strong but this time I am not feeling very strong. I will keep a happy face for my hubby's sake but I am sick inside. We've been down this road so many times that I know what to expect, whether its chemo or surgery, but I am just so tired of it all. And I know he is too. Anyhow, thank you for letting me vent. For some reason it feels a little better just typing these words on the screen.
Hi-my wife was diagnosed with leiomyosarcoma almost a year ago. I know what you mean about life starting to feel normal and then it comes back and kicks you in the head. Her biggest challenge is keeping food down because she has tumor in her stomach (She is stage 4, diagnosed one year ago and failed clinical trials and is now on hospice)
There are days when she is more alert and my hopes go up, and then like today, she sleeps the entire day and I feel totally alone.
This stinks.
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1estymammaw and everyone else
As Papillion said 'Hey you bas*&^ds, I'm still here" The bas8&*($ds being LMS. So far so good. It's been almost 5 years since my 10 cm Retroperitoneal Leiomyosarcoma. tumor was removed at MSKCC That's the thing about odds, there's always room to win once in a while. Of course I will be going for CT scans for the rest of my life but I made it this far so there is hope. i had some chemo but had an alergic reaction (go figure) so didn't get to much of it. My understanding is by definition they are all high risk, high grade and aggresive. Hopefully they will come up with some kind of drug to "cure' this. In the meantime, stay with a sarcoma Center that has seen these. My doctor saved my life while others said I was doomed. Good luck, remember day by day. Love to all
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New Therapy
Hi, I have been on a couple cycles of Doxi/Olaratumab for LMS, and I seem to be responding, based on improved symptoms. I had issues with "tumor fever" syndrome, where I would get fever of 102 or higher with no sign of any infections, plus pressure on the nerves of one leg caused mobility problems and pain. All of these symptoms have improved, so I am hoping the next CT scan shows good news. Previously I had been on Gemzar/Taxotere, which showed some response, but not as good as we hoped. Has anyone else tried this new regimen of combined chemo and immunotherapy? Other than fatigue and nausea, I'm not having any serious side effects. This cancer may be aggressive and stubborn, but so am I!
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LMS SURVIVOR
Hi to those diagnosed with LMS. I was diagnosed 2008, had surgergy to remove a lump at that time- what was thought to be a Barton's cysts, after many hours of surgery. I woke to be told LMS cancer present in my pelvic floor. Is very rare and that I require more surgery. I did have re accuring fibrouids excised twice prior. Completed chemoradiation every day for 5 weeks after which I recovered to have my second surgery. Margins were not clear so I needed to remove my anus. Resection with a colostomy bag, RS virginal ectomy performed and reconstruction surgery. I went through a lot of pain, hard times both physically and emotionally. Good news is to all those diagnosed with this dreadful disease is there is hope. I was told it is rare and survival rate poor. I'm still here 9 years on.
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Began this journey with uterine leiomyosarcoma and hysterectomy two years ago. I now have recurring leiomyosarcoma in hip and lung. Are using combination of doxorubicin and lartruvo, a new growth inhibitor. On round 4 and tumors have stopped growing. Worst side effect is chronic fatigue.
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leiomyosarcoma
Looking for people who have had good results from treatment and what those treatments have been. My sister has TP53 with large leiomyosarcoma originating in stomach 3 yrs ago. Surgery removed the tumor and then there was spread to liver and now uterus and stomach again. She has been resistant to many chemos tried. Embolization got the liver lesions under control, but now spread due to metastatic stage 4. She is being treated at very reputable cancer center but desperate for treatments that people have had success with. TIA
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I'm still alive you bstareds
Quoting from the movie Pappion seemed appropriate. I'm still here. If you look back I had LMS back in 2012 and it's 2021 now so just wanted to let people know that. I had a 10cm tumor in my perineal cavity that was removed along with one kidney. Although I did have a recorance in my chest area in 2018 it was small being that I get ct scans every year (just got off the semi annual plan) and they removed that. The bad news of course was Being that it came back it made it a lot more likely it will come back again but the not as bad news is being that it took 6 years to come back and was only about 1 cm means it's relatively slow growing and can hopefully be removed if and when it does come back again. Back to every 4 month scans. My heart goes out to those of you that haven't had as good of results as I had so far. We are all on a time schedule we just don't know what it is so all I can say is do your best to try to get some enjoyment with whatever time we are on this earth. Sorry for the pop psychology but what else is there reAlly. Love to all and as my father used to say when he was alive "I have to get well to be well"
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Need Contact details of your Sacroma Specialist. Thank Youultracyclist said:Caregiver
I too am a caregiver. my wife has been fighting LMS since 1998. I wish I knew then what I know now. LMS does not nrespond well to chemo or radiation. There is now a new chemo that was just released, Votreint. She started taking it but had to stop due to a serious infection. You need to find Good oncologist who knows what they are doing. We are from the Philly area and are to Jefferson Hospital for her treatment. All LMS are rare cancers, with very few people having them, but hers is even more rare. It is atypical, only having a 3 - 5 % growth rate. That means that all the chemos she had only gave her the side-effects. After 5 oncologist, we found one who finally asked the unasked question, why are you still alive and proceeded to investigate. She is best. If you want the contact, I will get glad to forward it to you.
My prayers are with both of you
ultracyclist
Top of the day. Many thanks for offering to share deatils of your sarcoma specialist with us. I recently had a total hysterectomy barely 3 weeks ago {BTW, my 3rd surgery in 2years after a laparoscopy and a myomectomy. Gynea-Oncologist who carried out the surgeryrecommended a Pathology test considering the size of the tumor and rate at which it grew after my prior 2 surgeries. Post-op I went for the Pathology test which came back with a Leiomyosarcoma diagnosis. Oncologist reffered me to a Sarcoma Specialist who proffered Chemo as treatement option even though he says he can't gaurantee the effectiveness of Chemo in treating LMS since this kind of sarcom is resistant and non-responsive to chemo. I would like to seek alternate option{s} from another Sarcoma Specialist to wegh my treatment options and would appreciate if you can please share details of the Oncologist who asked the unasked question. Many Thanks.
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Keep Up Hope: Thank You.woody1022 said:Keep up hope
Just a message to everyone with LMS.Don't lose hope & keep fighting.I was given less than 1 year, but I am now still cancer free at 2 yrs & 8 months & counting.It can be beaten,so good luck to all.
Thank you for the encourhaement. How have you been able to manage the diagnisis? Did you get Chemo, radiation or used holistic measure. Please advise. Many thanks.
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Family of new LMS patient
Hi all, I have been reading the forum for a few weeks now and wasn't sure if I should post as I am not a patient/survivor myself, but today I thought I might as well.
I am 36 and my Mum is 73, we live in Australia, and two months ago Mum's doctors found a 6cm tumour near her right kidney. It was entirely unexpected, she is quite healthy but luckily her GP is thorough and sent her for a CT after some abdominal pain. Since then we have seen our state's sarcoma service and they've done a biopsy and advised that it is very likely leiomyosarcoma of the right renal vein. They have been very good at explaining what Mum needs and sending us to all the different specialists as she prepares for surgery. Next week she is having surgery to remove the tumour and possibly a lot of other organs or parts of them. The PET scan showed no mets anywhere else but they know they will need to remove the right kidney as the tumour is squishing it, but hasn't invaded it. They also think it's likely they'll have to remove and replace a part of the inferior vena cava. The other possibilities are losing some of her small intestine, or stomach or large intestine, or pancreas. The surgery is going to be 8-12 hours long.
We really are very grateful for having such a great free health service, and specialists that were able to organise all this so quickly. Also grateful that our state has almost no Covid cases because of strict border control, so we've not had surgical procedures be postponed because of full hospitals and infection risks. But I am still really worried about her, because it's such a huge procedure, and there are a lot of things that could happen during surgery or in recovery. It doesn't help that her journey so far is unlike what most people think of cancer - she's not "sick", she just had a bit of abdominal pain, she's not having any medications, she's not losing her hair, and she's having massive surgery immediately. It's hard to explain all of it to anyone, and there's not really anyone we've ever met or heard of with a similar story. We have been told that chemotherapy is useless and they never use it for LMS, but that radiotherapy is sometimes used if the tumour recurs and they want to shrink it, but because of the location of her tumour they really don't like doing that because of all the other organs around it would be damaged. So this surgery is her only shot. We know they often come back, and every surgery has worse odds than the previous one. But we can't do anything about any of that.
Ok I was never good at being succinct with stories! But I just wanted to say hi and make a post before my Mum has surgery. Thank you everyone else that has posted, reading your stories has given me hope and just made me feel a bit less lonely. I wish you all well wherever you are in the world and on your journey.
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Well as Pappion said “Hey you bastards I’m still here” so as far as LMS it stuck up it’s ugly head again in 2018 I’m now living in Colorado so went to UCH which has a cancer center and a sarcoma area I just started going for yearly scans when they saw a little something in the fatty part of my chest it wasn’t until after they took it out and did a biopsy did they know it was LMS again it was an outpatient procedure and it went fine the problem is that being that it came back means it matastisized and so the changes of it coming back again went from around 15% to around 90-95% however it is now 2022 and so far so good My oncologist said he’s more worried about my weight than about the cancer I’m just getting over my first bout of Covid it wasn’t too bad Anyway how is your husband doing I hope he is doing well be well one in a billion
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A few months ago I had a CT Scan for kidney stones and a mass was found. So fast forward to Oct 10, 2022 and the surgeon was hoping to remove said mass. Unfortunately they had to remove my whole kidney. Upon testing it they found out I had renal vein Leiomyosarcoma. Not the news I was expecting. I was told that the good news was it was caught early and the whole kidney was removed. For now no chemo but CT scans every 3 months. First one is this Friday where I pray there are no other spots.
So I’m little nervous praying I have a clean scan but I would love to hear how people work through the nervousness..
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This sounds very similar to me my tumor was surrounding the kidney and the ureta and was in the renal vein they took out the kidney and cut the vein to as close to the aorta as they could that was 2012 that was 2012 and I’m still here
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As Pappion said “Hey you Bast@&$TD’s I’m still here”. Yup it’s 2023 and I’m still alive. Had LMS tumor and left kidney removed at MSKCC in 2012. Then in 2018 had a small recurrence taking out of fatty part of chest. Yesterday I just found out that 2 nodules in my lung that they have been following have definitely grown so welco e back LMS. HOPEFULLY they remove them at some point when they get a little bigger (don’t ask I have t figured that one out yet myself) the big question is do they stop at 2? If so I think I should be good. If a bunch start showing up then not so much. As far as radiation or chemo well hopefully it never comes to that Good luck to all
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Hi, would you mind sharing her email. if possible? My recent pelvic MRI shows suspicious feature for uterine leiomyosarcoma. I m scheduled for total hysterectomy next week but now everyone says the importance of a sarcoma specialist which makes me want to make an appointment with her for seond opinion. Please share if you can. Many thanks.
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