leiomyoma sarcoma stage 4

Sar

I have been diagnosed with stage 4 leiomyoma sarcoma. It is just outside the stomach and has spread to the liver. I have just completed chemotherapy and a recent scan shows it is stable. I have looked at complementary treatments in particular dietary changes (eg no red meat and dairy). I was wondering if there is anyone out there in a simlar position to myself who has either achieved stablity or shrinkage of their sarcoma using alternative treatments.
I weould be very grateful for any feedback.

sally36

I am sorry to hear of your
I am sorry to hear of your cancer. My mom also has stage four leiomyosarcoma. It is in her leg,stomach,lungs, and liver. She is getting her 3rd chemo treatment this week and hopefully the pet scan will show it shrinking. The last one showed no change. I can't believe she had no symptoms and is already stage 4. They cannot opperate on hers and I don't think she is being honest with me to protect me or something, but I can't stand not knowing if she can survive this. I am trying to be positive but with it being so rare I am having a hard time even finding other people with this. I would love to here from you with how your making out. Hope everything is fine and I hope it helps to know that there is someone going through the same thing. Take care, Sally

modrnmrcle

sally36 said:

I am sorry to hear of your
I am sorry to hear of your cancer. My mom also has stage four leiomyosarcoma. It is in her leg,stomach,lungs, and liver. She is getting her 3rd chemo treatment this week and hopefully the pet scan will show it shrinking. The last one showed no change. I can't believe she had no symptoms and is already stage 4. They cannot opperate on hers and I don't think she is being honest with me to protect me or something, but I can't stand not knowing if she can survive this. I am trying to be positive but with it being so rare I am having a hard time even finding other people with this. I would love to here from you with how your making out. Hope everything is fine and I hope it helps to know that there is someone going through the same thing. Take care, Sally

I have had leiomyo for 7 years
Hi I have had leiomyosarcoma for seven years. it started as retro peritoneal and was surgically removed. That was in 2003. It metastasized to my lungs in 2007 was removed and they found it in the hip bones. Chemo was the next step and I have had adriamyicin, ifosfomide,and gemzar, taxiter regimes over the last 3 and a half years. last march it moved to my femur and the second treatments of gemzar taxiter shrunk it in the femur. i am still battling with the one in my hip and have several spots in various places in the sub cutaneous muscle. Basically I have had spots come and go, either surgically, or due to chemo,or just plain healing from the grace of God. The fact is I am still here and living. I understand what it is like to feel frustrated and tired by the fight and just when you think you are feeling better, the doctors, who are wonderful, tell you the next round of chemo is coming. One side of my mind says why do I have to go through something that is going to make me feel worse than I do when I am not on it? However the other side of me reminds me that I have two great kids, a husband and a family I am not ready or willing to give up on right now. I also have a strong belief that God is using my illness to show people not to give up hope. I have been blessed with seeing some of these outcomes. So, no matter how bad I am feeling I have accepted the fact that treatment is part of my routine and the more "normal" I can stay with work, family activities and hobbies, the less the disease has won. I have already passed the five year mark as even though I am going through recurrence, I am still here living. That is my secret. i keep going and do not believe anyone can tell me how long I will have. Only God can do that and it might not be the cancer that takes me when the time comes. Keep the hope, and enjoy life and the people in it.

modrnmrcle

sally36 said:

I am sorry to hear of your
I am sorry to hear of your cancer. My mom also has stage four leiomyosarcoma. It is in her leg,stomach,lungs, and liver. She is getting her 3rd chemo treatment this week and hopefully the pet scan will show it shrinking. The last one showed no change. I can't believe she had no symptoms and is already stage 4. They cannot opperate on hers and I don't think she is being honest with me to protect me or something, but I can't stand not knowing if she can survive this. I am trying to be positive but with it being so rare I am having a hard time even finding other people with this. I would love to here from you with how your making out. Hope everything is fine and I hope it helps to know that there is someone going through the same thing. Take care, Sally

alternative treatments
I have heard some people have had luck with visualization. As crazy as this may sound I did try it with the spot on my femur, In January it was a 6 inch neoplasm, by march they could only see marrow on the pet scan. I stopped the visualization technique and in may it was 1 centimeter.I was on chemo at the time, but maybe it didn't hurt either. I will admit I am not big on changing my diet as the carbs I do eat tend to help me not get sick, but i also cut out sugar for the most part, and now that the chemo is on a break, I am able to reduce my portions so I can lose weight (not easy when on chemo and steroids and without being able to excercise.)
I have also heard that drinking alkaline water may have some redeeming qualities, although you can only get it at certain health food stores. Also I've had other patients in the chemo room at the clinic I go to have success story's with some chinese herb cleanses and such. You can research them on the net but be careful that it is a reliable site.

sally36

modrnmrcle said:

I have had leiomyo for 7 years
Hi I have had leiomyosarcoma for seven years. it started as retro peritoneal and was surgically removed. That was in 2003. It metastasized to my lungs in 2007 was removed and they found it in the hip bones. Chemo was the next step and I have had adriamyicin, ifosfomide,and gemzar, taxiter regimes over the last 3 and a half years. last march it moved to my femur and the second treatments of gemzar taxiter shrunk it in the femur. i am still battling with the one in my hip and have several spots in various places in the sub cutaneous muscle. Basically I have had spots come and go, either surgically, or due to chemo,or just plain healing from the grace of God. The fact is I am still here and living. I understand what it is like to feel frustrated and tired by the fight and just when you think you are feeling better, the doctors, who are wonderful, tell you the next round of chemo is coming. One side of my mind says why do I have to go through something that is going to make me feel worse than I do when I am not on it? However the other side of me reminds me that I have two great kids, a husband and a family I am not ready or willing to give up on right now. I also have a strong belief that God is using my illness to show people not to give up hope. I have been blessed with seeing some of these outcomes. So, no matter how bad I am feeling I have accepted the fact that treatment is part of my routine and the more "normal" I can stay with work, family activities and hobbies, the less the disease has won. I have already passed the five year mark as even though I am going through recurrence, I am still here living. That is my secret. i keep going and do not believe anyone can tell me how long I will have. Only God can do that and it might not be the cancer that takes me when the time comes. Keep the hope, and enjoy life and the people in it.

I am so glad you are doing
I am so glad you are doing as well as you can. My mom is stage 4 and cannot be opperated on, so this scares the hell out of me. I can't help but wonder how far and how long she can go. She has it in her one leg, abdomin, lung and liver. Can chemo really give her a few years? I can only pray but it is taking a toll on me as well. Let me know how you make out, it helps knowing someone else is going thru this and we are not alone.

okchockeynut

sally36 said:

I am so glad you are doing
I am so glad you are doing as well as you can. My mom is stage 4 and cannot be opperated on, so this scares the hell out of me. I can't help but wonder how far and how long she can go. She has it in her one leg, abdomin, lung and liver. Can chemo really give her a few years? I can only pray but it is taking a toll on me as well. Let me know how you make out, it helps knowing someone else is going thru this and we are not alone.

My husband also has leiomyosarcoma
It began as a small lump in his foot in January 2003. It went to his liver 1 1/2 later. He has had since 1 more liver operation and 2 lung operations. A year ago we found out it had spread multiple places in the lung, liver, one adrenal gland and pancreas. He is on his 3rd type of chemo. Started with Gemzar/Taxotere, Temodor, and now AIM. He is going to have his 5th cycle in a week and a half and then they will do a CT. Did a CT after 2 rounds and it stabilized most of the tumors but his liver has enlarged, I was told this was due to the chemo, not the cancer.
He also had a BK amputation but gets around very good. He is week and has to watch what he eats but his main symptom now is weakness.
We are praying it will keep his cancer stable till another type of chemo is discovered that will whup this rare and mean type of cancer.
I don't know how old your mother is, but help her keep fighting. Some people have received shrunken and destroyed tumors from chemotherapy.

Sandy C.

sally36 said:

I am so glad you are doing
I am so glad you are doing as well as you can. My mom is stage 4 and cannot be opperated on, so this scares the hell out of me. I can't help but wonder how far and how long she can go. She has it in her one leg, abdomin, lung and liver. Can chemo really give her a few years? I can only pray but it is taking a toll on me as well. Let me know how you make out, it helps knowing someone else is going thru this and we are not alone.

KEEP THE FAITH
I am stage 4 also and pretty much have it in the same places as your mom. Mine also can't be operated on. Your mom needs you to be strong for her. Just think if it scares you what it does to her. When she is having a bad day just let her know2 you are there. Some times just a back rub does alot for us.

4girls4me

okchockeynut said:

My husband also has leiomyosarcoma
It began as a small lump in his foot in January 2003. It went to his liver 1 1/2 later. He has had since 1 more liver operation and 2 lung operations. A year ago we found out it had spread multiple places in the lung, liver, one adrenal gland and pancreas. He is on his 3rd type of chemo. Started with Gemzar/Taxotere, Temodor, and now AIM. He is going to have his 5th cycle in a week and a half and then they will do a CT. Did a CT after 2 rounds and it stabilized most of the tumors but his liver has enlarged, I was told this was due to the chemo, not the cancer.
He also had a BK amputation but gets around very good. He is week and has to watch what he eats but his main symptom now is weakness.
We are praying it will keep his cancer stable till another type of chemo is discovered that will whup this rare and mean type of cancer.
I don't know how old your mother is, but help her keep fighting. Some people have received shrunken and destroyed tumors from chemotherapy.

I am wondering if your
I am wondering if your husbands inital lump was in a vein in his foot? Mine began in a vein in my hand. I am going for my first 3 month set of scans tomorrow and I am so afraid...I just finished recovering from radiaiton/surgery and a nonhealing surgical wound last week! They did see a small spot on my liver at last CT and reported that it appeared to be "statistically benign"..HELLO...Have they not heard how uncommomonly statistically LMS is?
Please let your husband know we are thinking of him.

Marvusman

modrnmrcle said:

alternative treatments
I have heard some people have had luck with visualization. As crazy as this may sound I did try it with the spot on my femur, In January it was a 6 inch neoplasm, by march they could only see marrow on the pet scan. I stopped the visualization technique and in may it was 1 centimeter.I was on chemo at the time, but maybe it didn't hurt either. I will admit I am not big on changing my diet as the carbs I do eat tend to help me not get sick, but i also cut out sugar for the most part, and now that the chemo is on a break, I am able to reduce my portions so I can lose weight (not easy when on chemo and steroids and without being able to excercise.)
I have also heard that drinking alkaline water may have some redeeming qualities, although you can only get it at certain health food stores. Also I've had other patients in the chemo room at the clinic I go to have success story's with some chinese herb cleanses and such. You can research them on the net but be careful that it is a reliable site.

I had Leiomyosarcoma stage
I had Leiomyosarcoma stage 3. My tumor was high grade, high mitotic index and was close to 15 cm in size. I had everything going against me but somehow it had not spread and was able to be surgically resected with clear margins. I did not do adjuvent therapy as it is ineffective with LMS. 15 months later it came back and I had another surgery to remove it from my liver. Once again thank god it did not spread. I keep dodging bullets but fear eventually my luck must run out and it's going to get me. They need to work hard to find a cure for this super rare sarcoma but unfortunately next to no funding comes it's way because it's so rare.

diana_1424

modrnmrcle said:

I have had leiomyo for 7 years
Hi I have had leiomyosarcoma for seven years. it started as retro peritoneal and was surgically removed. That was in 2003. It metastasized to my lungs in 2007 was removed and they found it in the hip bones. Chemo was the next step and I have had adriamyicin, ifosfomide,and gemzar, taxiter regimes over the last 3 and a half years. last march it moved to my femur and the second treatments of gemzar taxiter shrunk it in the femur. i am still battling with the one in my hip and have several spots in various places in the sub cutaneous muscle. Basically I have had spots come and go, either surgically, or due to chemo,or just plain healing from the grace of God. The fact is I am still here and living. I understand what it is like to feel frustrated and tired by the fight and just when you think you are feeling better, the doctors, who are wonderful, tell you the next round of chemo is coming. One side of my mind says why do I have to go through something that is going to make me feel worse than I do when I am not on it? However the other side of me reminds me that I have two great kids, a husband and a family I am not ready or willing to give up on right now. I also have a strong belief that God is using my illness to show people not to give up hope. I have been blessed with seeing some of these outcomes. So, no matter how bad I am feeling I have accepted the fact that treatment is part of my routine and the more "normal" I can stay with work, family activities and hobbies, the less the disease has won. I have already passed the five year mark as even though I am going through recurrence, I am still here living. That is my secret. i keep going and do not believe anyone can tell me how long I will have. Only God can do that and it might not be the cancer that takes me when the time comes. Keep the hope, and enjoy life and the people in it.

Coping and survival
Dear Modrnmrcle,
I joined this site recently looking for others who are also afflicted with this rare curse - leiomyosarcoma. I also had a retroperitoneal 2 years ago, and now it is in my lung and breast. I never had chemo before, but will begin the gemzar/taxotere combo. next week.
This has been very hard, and although I have been in good health for 2 years, I fear the side effects of the chemo, and the possibility of new tumors. I had surgery for a port yesterday, so the reality has hit home, so to speak...
It is hard to be "normal" and cheerful, but I was encouraged and inspired by your words. I have loving and supportive friends, family, and co-workers, but I think only those of us who are dealing with this can really understand. Thank you for your positive outlook, and best of luck to you.
Diana

gretaal

Marvusman said:

I had Leiomyosarcoma stage
I had Leiomyosarcoma stage 3. My tumor was high grade, high mitotic index and was close to 15 cm in size. I had everything going against me but somehow it had not spread and was able to be surgically resected with clear margins. I did not do adjuvent therapy as it is ineffective with LMS. 15 months later it came back and I had another surgery to remove it from my liver. Once again thank god it did not spread. I keep dodging bullets but fear eventually my luck must run out and it's going to get me. They need to work hard to find a cure for this super rare sarcoma but unfortunately next to no funding comes it's way because it's so rare.

You are the first i can
You are the first i can identify with. Hope I can dodge as many bullets as you have. Grade 3 tumor >10 metosis removed June 7th of this year. Gem/tax chemo, Sept scan clear,but scan I took for radiation purposes "looks suspicious". I will be going for a diagnostic cscan this morning. I pray its nothing and then I pray they can remove whatever it is. I agree we need a cure for LMS!

DJK

Marvusman said:

I had Leiomyosarcoma stage
I had Leiomyosarcoma stage 3. My tumor was high grade, high mitotic index and was close to 15 cm in size. I had everything going against me but somehow it had not spread and was able to be surgically resected with clear margins. I did not do adjuvent therapy as it is ineffective with LMS. 15 months later it came back and I had another surgery to remove it from my liver. Once again thank god it did not spread. I keep dodging bullets but fear eventually my luck must run out and it's going to get me. They need to work hard to find a cure for this super rare sarcoma but unfortunately next to no funding comes it's way because it's so rare.

LEIOMYOSARCOMA STAGE 4
I also have LMS stage 4. My tumor was found in my kidney by accident in July 2010. It is also high grade and was 7 cm in size. They removed the kidney with clear margins. I did not have to go thriugh any treatments. August 2010 I went for a chest CT and they found about 20 spots on lungs. At this point they really don't know if they are cancer and or/ if it is LMS. Spots not large enough to biopsy. This is my second bout with canver. In november 1794 I was diagnosed with Hodgkins Lymphoma. I went through chemo and radiation along with major surgery to remove spleem. appendix, tonsils and a lot of cancer nodules in chest area. They say the LMS could be a result of the radiation I had them. And I agree we need to get this type of cancer known so we can get the funding we need for more research...

DaveGiz

Leimyosarcoma

Hello I recently lost my wife to stage 4 Leimyosarcoma or rather lost her to Kidney failure caused by the Heart Failure caused by the second type of chemo they tried on her.  It was her positive attitude that helped her to survive for a year.  Never lose hope.  Her cancer was in both lungs, near her kidney going up into a major artery and in her liver.

mluebbert67

https://csn.cancer.org/discussion/comment/865533#Comment_865533

Wow! The stories that I just read make me proud and also scare me. I was diagnosed with Leiomyosarcoma on January 15, 2018.

My boyfriend at the time I sober for eight years. On December 10 he decided to drink, got drunk, and beat me up. I went to the hospital they did x-rays and that’s how I found my cancer. It had metastasized to my lungs more importantly, the left lung couldn’t be saved. I had no symptoms. They took my lung on January 31, 2018. They moved quick on me because even though leiomyosarcoma is very rare, my oncologist also knows it’s very aggressive and between my oncology surgeons, my oncology radiologist, and my oncologist they worked quick fast and efficiently. Today’s date is June 28, 2023 I’ve gone through cryo- ablation’s and surgeries.

We all know that chemotherapy and radiation have their own consequences. Mine were avascular necrosis in my left femur, my bones easily break now and my right lung is slowly being taken over although I know what it’s gonna be like in the end, I haven’t crawled under a rock.

I treat every day as an adventure and try to be a better person than i was the day before.

My question is: with all the people that have posted on this topic, i.e. dates of June 2010.

How many are still fighting? How many are still the pioneer warriors?

i see that I’m in good Company.

I would like to hear more about your journey not just about the sarcoma. I want to hear about what you’ve done and where you’ve been and all the adjectives and details that enhance those stories.

kashanimn

https://csn.cancer.org/discussion/comment/912862#Comment_912862

I was diagnosed with Leiomyosarcoma stage 3 a year ago. I spent a year trying to exercise and lose weight but I kept getting more and more bloated. Finally I asked my doctor for a ct scan which revealed a large mass in my stomach. It was successfully removed surgically. However it wrapped around my utterer and I lost my left kidney. I also got an infection in one of my incisions and had surgery to remove that. I was left with an open wound and a wound vac for almost 2 months. The hospital stay and recovery was the worst. Thank to God I was able to go without any chemo or radiation. I have had clean scans so far. My surgeon is amazingly skilled at removing any areas the cancer was near. I do live with the fear of it coming back. I’m going on 55 years young and have two beautiful daughters that are just starting their lives. It’s so nice to hear from someone like me. Thank you for sharing.