Myxoid liposarcoma in right thigh

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META

lebtuckygal said:

Rhonda. This is the first time I've used this site but I connected with your story as my husband was a healthy 31 yr old and was diagnosed with myxoid liposarcoma in his groin area. He underwent two surgeries in 1994. Had a reoccurence in his abdomen in 1997 and again in 2003, 2004 and this past Friday we have been told of yet another new tumor in the lymph nodes of his left leg. Unfortunately, if you read through info on sarcoma it is a "monster". He has undergone radiation a couple of times,but as you can see it has not helped. We too have been told chemo is not effective and we too have been told all we can do is "buy time". We live in Indiana and are on our way to MD Anderson in Texas for his upcoming surgery. Our doctors here in Indinapolis have all but given up on trying to contain it. My husband is strong willed and has a wonderful outlook, he just keeps on going. I try to keep a stiff upper lip and stay positive. We have battled this for 11 out of our 14 years of marriage. Stay strong, Love Him, Live Everyday to it's fullest, and PRAY! If you need to talk or have questions I understand. I'll keep your family in my prayers. Anita

mYXOID LIPOSARCOMA
HELLO MY NAME IS META AND I FOUND OUT AFTER GIVING BIRTH TO MY NEW BORN BABY BOY THAT I HAVE IT IN MY LEFT THIGH.... I AM SCARED I HAVE ALSO 2 BEAUTIFUL CHILDREN .. WE MOVED ROM VIRGINIA TO INDIANA. I HAVE TO SEE THE ORTHOINDY IN INDIANAPOLIS TOMORROW ACTUALLY TODAY. I DONT KNOW WHAT TO EXPACT... BESIDES I AM VERY SCARED DONT KNOW WHAT TO THINK... I WAS READING HERE SO MANY THINGS WHICH SCARED ME TO DEATH... I WASNT INFORMED HOW DANGEROUS IT IS.

CAN YOU TELL ME WHICH DOCTORS YOU HAVE SEEN? IN INDIANAPOLIS AND WHY DID HE HAD TO GO TO TEXAS? WHY COULDNT THEY HELP HIM IN INDIANAPOLIS. I AM SO SCARED I AM ABOUT TO PASS OUT.


CAN ANYBODY HELP ME OR TELL ME WHAT I SHOULD KNOW ...

Emilyfimily

META said:

mYXOID LIPOSARCOMA
HELLO MY NAME IS META AND I FOUND OUT AFTER GIVING BIRTH TO MY NEW BORN BABY BOY THAT I HAVE IT IN MY LEFT THIGH.... I AM SCARED I HAVE ALSO 2 BEAUTIFUL CHILDREN .. WE MOVED ROM VIRGINIA TO INDIANA. I HAVE TO SEE THE ORTHOINDY IN INDIANAPOLIS TOMORROW ACTUALLY TODAY. I DONT KNOW WHAT TO EXPACT... BESIDES I AM VERY SCARED DONT KNOW WHAT TO THINK... I WAS READING HERE SO MANY THINGS WHICH SCARED ME TO DEATH... I WASNT INFORMED HOW DANGEROUS IT IS.

CAN YOU TELL ME WHICH DOCTORS YOU HAVE SEEN? IN INDIANAPOLIS AND WHY DID HE HAD TO GO TO TEXAS? WHY COULDNT THEY HELP HIM IN INDIANAPOLIS. I AM SO SCARED I AM ABOUT TO PASS OUT.


CAN ANYBODY HELP ME OR TELL ME WHAT I SHOULD KNOW ...

MD Anderson is in Texas -
MD Anderson is in Texas - they're one of the best of the best for sarcomas. I didn't go there, but if I get another recurrence I'm planning on going there next time.
I'm doing treatment right now for a mixoid liposarcoma that was in the side of my calf. It's no fun, but totally do-able. Try not to get too scared. Any cancer can be dangerous, but I like to remember the fact that liposarcomas are in a "spot". You can have surgery and get rid of that "spot". Other cancers, like leukemia, metastacized stuff, things in your belly, etc aren't as easy to remove. Comparatively, liposarcomas aren't that horrible really, IMO. Don't be too scared, you can do this.

jordan386

Hi Rhonda, I'm Jordan and I
Hi Rhonda, I'm Jordan and I was diagnosed with myxoid liposarcoma when I was seventeen. Mine was actually in my left ankle, and was roughly the size of a softball. It was wrapped around my achilles heel, and all of my other nerves and tendons, which made it tricky to get out without cutting through it all. When I went to see an oncologist, she recommended not to do the chemo, as it can cause other kinds of cancers down the road. I went through five weeks of radiation, which was a pain, because I had to drive from my home to Salt Lake, which is an eight hour drive all together, not including the doctor's visits. I was only a stage one, but I am still recieving MRI's and catscans every three months for the next two years.
My cancer appeared when I got pregnant at 16, because the pregnancy makes everything grow, tumors included. My son literally saved my life. I was told I'd had the cancer for a few years most likely, but liposarcoma in the limbs tends to be slow growing. I know if liposarcoma does spread, it goes to the lungs or the lymph nodes generally, because I get checked everytime I go. I have only been in remission for six months, but I am more grateful for the six months than you can imagine. So far, there has been no sign of it returning.
My doctor tried to be very optomistic and kind to me, and if you don't feel you are getting the same treatment I recommend going to another doctor. Your life is in their hands, so to speak, and you want to trust them.
I wish you and your husband the best of luck, as well as your children.

Lady_Mac

jordan386 said:

Hi Rhonda, I'm Jordan and I
Hi Rhonda, I'm Jordan and I was diagnosed with myxoid liposarcoma when I was seventeen. Mine was actually in my left ankle, and was roughly the size of a softball. It was wrapped around my achilles heel, and all of my other nerves and tendons, which made it tricky to get out without cutting through it all. When I went to see an oncologist, she recommended not to do the chemo, as it can cause other kinds of cancers down the road. I went through five weeks of radiation, which was a pain, because I had to drive from my home to Salt Lake, which is an eight hour drive all together, not including the doctor's visits. I was only a stage one, but I am still recieving MRI's and catscans every three months for the next two years.
My cancer appeared when I got pregnant at 16, because the pregnancy makes everything grow, tumors included. My son literally saved my life. I was told I'd had the cancer for a few years most likely, but liposarcoma in the limbs tends to be slow growing. I know if liposarcoma does spread, it goes to the lungs or the lymph nodes generally, because I get checked everytime I go. I have only been in remission for six months, but I am more grateful for the six months than you can imagine. So far, there has been no sign of it returning.
My doctor tried to be very optomistic and kind to me, and if you don't feel you are getting the same treatment I recommend going to another doctor. Your life is in their hands, so to speak, and you want to trust them.
I wish you and your husband the best of luck, as well as your children.

Hi Everyone,
We just found
Hi Everyone,

We just found out yesterday that my husband has myxoid lipomasarcoma. What a way to start the weekend! We won't be able to see the oncologist until Tuesday and I am crying every two hours and my kids wonder what is wrong with me. What I've read so far from other sites make it seen so terminal. We won't have any information until his check up and I'm going crazy.

Jordan- My husband had his tumor above his right ankle kinda like you, but his doctor removed it before doing any tests or scans because he thought it was another type of growth that was common. "A strange looking thing" he tells me after removing the tumor from my husband's leg on Monday. Not what I wanted to hear. They also said that they would let us know the results of the biopsy the following day, but we didn't get the news until yesterday. I'm so mad. I'm glad to know that you are recovering well. I wish you positive thoughts.

I want to know if any one tried alternative medicines to complement the radiation/chemotherapy? Did you change your diet and how. Is there a book or two that anyone can recommend?

I'm going crazy and want to help my husband beat this any way possible. I've bought flax seeds, flax oil, oxygen drops, blue green algea, green foods, calcium supplements, vitamin D, and switching our cooking oils and diet to help balance his body's ph level to be more alkaline. If anyone has tried alternative therapy or any information about it please let me know.

Thank you all for letting me share this with you, I don't know who to talk to. When you talk to people who have not experienced this they can only say that the are sorry to hear it. I myself had a ovarian tumor removed before having my first child and have been lucky that it was benign.

michael1helen

myxoid liposarcoma
I was diagnosed with myxoid liposarcoma in 1972 and am still here...will write more if you wish; just became a member of this site after doing more research on long-term diagnoses of this illness...am willing to talk...

michael1helen

META said:

mYXOID LIPOSARCOMA
HELLO MY NAME IS META AND I FOUND OUT AFTER GIVING BIRTH TO MY NEW BORN BABY BOY THAT I HAVE IT IN MY LEFT THIGH.... I AM SCARED I HAVE ALSO 2 BEAUTIFUL CHILDREN .. WE MOVED ROM VIRGINIA TO INDIANA. I HAVE TO SEE THE ORTHOINDY IN INDIANAPOLIS TOMORROW ACTUALLY TODAY. I DONT KNOW WHAT TO EXPACT... BESIDES I AM VERY SCARED DONT KNOW WHAT TO THINK... I WAS READING HERE SO MANY THINGS WHICH SCARED ME TO DEATH... I WASNT INFORMED HOW DANGEROUS IT IS.

CAN YOU TELL ME WHICH DOCTORS YOU HAVE SEEN? IN INDIANAPOLIS AND WHY DID HE HAD TO GO TO TEXAS? WHY COULDNT THEY HELP HIM IN INDIANAPOLIS. I AM SO SCARED I AM ABOUT TO PASS OUT.


CAN ANYBODY HELP ME OR TELL ME WHAT I SHOULD KNOW ...

i can help...
Hi Meeta...I was diagnosed with a myxoid liposarcoma in 1972 right after the birth of my first child...i was scared to death! But I am still here...it was a tumor on my right thigh encased in a shell...three pounds of tissue and muscle were removed along with the cancer....and i still have my leg and my life and at that time...my doctor didn't really know what to do...my obstetrican told me to leave the lump; that it was jsut a fatty tumor and i would have a scar. I didn't listen...went to a surgeon. He put me in the hospital; operated on a Saturday! and then operated again...and then sent me home to my new baby. I ams till here. Actually I had no chemo and no radiation...if you want to talk more let me know...you will be ok...

trish2

michael1helen said:

myxoid liposarcoma
I was diagnosed with myxoid liposarcoma in 1972 and am still here...will write more if you wish; just became a member of this site after doing more research on long-term diagnoses of this illness...am willing to talk...

myxoid liposarcoma in left thigh
I was diagnosed with myxoid liposarcoma in april, 2010. The doctors want to do 3 rounds of chemo and 2 of radiation before the surgery to remove it. I have been reading all of these posts as well as other articles and see that they all say chemo has no effect on these tumors. The doctors are telling me that it is because micro cells could escape from tumor and travel to other parts of the body, such as the lungs. I am scheduled for chemo on the 17th of may. Really scared and questioning this again. Any info would be greatly appreciated.

gregpa

trish2 said:

myxoid liposarcoma in left thigh
I was diagnosed with myxoid liposarcoma in april, 2010. The doctors want to do 3 rounds of chemo and 2 of radiation before the surgery to remove it. I have been reading all of these posts as well as other articles and see that they all say chemo has no effect on these tumors. The doctors are telling me that it is because micro cells could escape from tumor and travel to other parts of the body, such as the lungs. I am scheduled for chemo on the 17th of may. Really scared and questioning this again. Any info would be greatly appreciated.

myxoid liposarcoma
A little over two years ago my wife was diagnosed with myxoid liposarcoma in her right thigh. At the time it was a stage II tumor, 7 X 5 X 3 cm, <5% round cell, negative for necrosis, few mitotic figures, somewhat encapsulated. Even though it's a stage II tumor it is considered to be of a low grade. We were first diagnosed locally (we live in South Central Pa) but due to some of the treatment plans proposed, we sought a second opinion at Sloan Kettering in New York. Let me mention this, at the time my wife was diagnosed she was 18 weeks pregnant. The treatment plan presented to us locally had my wife aborting our baby and having some heavy duty radiation treatment immediately. Anyway, the Docs at Kettering made it very clear that termination of pregnancy and radiation was a "GROSS" overtreatment for this type of tumor and the only necessary treatment was another surgery providing a wide margin. Needless to say, we were in New York again three weeks later (actually our cancer free aniversary was May 5, two years) and my wife had the surgery, baby on board. The surgeon removed a 17 X 10 X 5 portion of her right thigh but she was home in 3 days (5 months later our daughter was born, healty and beautiful). She is cancer free and has very few residual problems with her leg with the only thing being a bit of numbness on her knee and a slight propensity for that ankle/calf to swell.

My advice to you is get to an experienced Sarcoma surgeon. Had we not sought out a second opinion just think of the consequences. These types of tumors are rare and not many surgeons or oncologist know how to treat them properly. If it doesn't feel right by all means go somewhere else! A good support network is important as is a positive outlook. Stay strong! God bless!!

Greg

ChuckR

trish2 said:

myxoid liposarcoma in left thigh
I was diagnosed with myxoid liposarcoma in april, 2010. The doctors want to do 3 rounds of chemo and 2 of radiation before the surgery to remove it. I have been reading all of these posts as well as other articles and see that they all say chemo has no effect on these tumors. The doctors are telling me that it is because micro cells could escape from tumor and travel to other parts of the body, such as the lungs. I am scheduled for chemo on the 17th of may. Really scared and questioning this again. Any info would be greatly appreciated.

Hi Trish2,I had a myoxide
Hi Trish2,

I had a myoxide liposarcoma removed from my left calf in 2000 along with the entire soleus muscle. It was well defined, encapsulated, and about a 5cm ball. Both the oncologist and leg Dr agreed the chemo will not work. They suggested radiation to get the cells that might escape. They were back in forth between doing radiation before _really to shrink the tumor) or after the surgery. They decided after so the wound would heal better as radiated skin would not heal as fast if done before the surgery. After the surgery I decided against radiation as now they had to cover the entire incesion which was from knee to ankle. Their only reasoning was that it was standard procedure. But in my case it was small and low grade so I opted out to prevent further knee and ankle issues. I went throught 8 yearly exams of cat scans of the abdomen to chest and MRI on the lower leg. Still clean.... Not the same situation maybe but just letting know my experience and circumstances.

Best Regards,
Chuck

naomipoe

META said:

mYXOID LIPOSARCOMA
HELLO MY NAME IS META AND I FOUND OUT AFTER GIVING BIRTH TO MY NEW BORN BABY BOY THAT I HAVE IT IN MY LEFT THIGH.... I AM SCARED I HAVE ALSO 2 BEAUTIFUL CHILDREN .. WE MOVED ROM VIRGINIA TO INDIANA. I HAVE TO SEE THE ORTHOINDY IN INDIANAPOLIS TOMORROW ACTUALLY TODAY. I DONT KNOW WHAT TO EXPACT... BESIDES I AM VERY SCARED DONT KNOW WHAT TO THINK... I WAS READING HERE SO MANY THINGS WHICH SCARED ME TO DEATH... I WASNT INFORMED HOW DANGEROUS IT IS.

CAN YOU TELL ME WHICH DOCTORS YOU HAVE SEEN? IN INDIANAPOLIS AND WHY DID HE HAD TO GO TO TEXAS? WHY COULDNT THEY HELP HIM IN INDIANAPOLIS. I AM SO SCARED I AM ABOUT TO PASS OUT.


CAN ANYBODY HELP ME OR TELL ME WHAT I SHOULD KNOW ...

I've lived your life!
I found out I had a mixoid liposarcoma in my RIGHT THIGH (!!!) right after I gave birth to my beautiful baby boy. The initial excision - the doctor's initially insisted that it 'must' be a lipoma and that i was a vain woman or a hypocondriac (!) - had been cut open and the encapsulation had been opened, and as a result it went into my bloodstream. When I was informed of my diagnosis, the prognosis was grim. My doctor literally said he was sorry but he was afraid (with the initial surgery being screwed up) that he had - and I quote - "signed (my)death warrant"..... that was over 7 years ago!!!!

Here's what you REALLY need to know:

1) Yes this cancer is extremely dangerous once it spreads, but it is a very non-agressive, slow moving cancer, so the chances are that if it's been caught early it will be easily contained and treated and that you will live for a very, very long time at a very, very high quality of life, even if they're unable to get it all.

2) Surgery is your BEST option. According to my Oncologist, who was one of only THREE doctors in the US who specialize in this type of cancer.... chemo 'feeds' this cancer, and radiation isn't really effective. Allow your doctor to do everything possible to get all the cancer in a wide excision - they'll tell you you may need an amputation. My doctor (YAW) performed a new surgery (I believe I was the first) that allowed for the leg to be saved. Essentially it's cutting the incision the opposite way they normally do. Seven years later, I'm still walking with my real leg... without a limp! Tell them to look it up! It's in the medical journals from 2002-2003 or somewhere around there.

Push through the pain of rehab therapy. Learn to walk right. You'll have a shark bite in the end, but if you use your leg correctly there's a good chance that will 'fill in' over the years - mine has.

3) This cancer is slow moving - did I say that already? Hear it again.

4) Because chemo and radiation are of limited or negative value, you really need to throw your full weight into prayer/medidation, diet, excercise, and supplements. I did. I'm supposed to be dead, remember (all through the bloodstream). I'm cancer free.
- prayer/meditation helps. Numerous studies at Harvard and John's Hopkins attest to statistically improved outcomes in double blind studies regardless of the faith of the prayers or the prayees. Whether you believe in anything or nothing, have someone do this for you.

- Go on an anti-cancer, limited carbohydrate, high fiber diet. Sugar feeds cancer. Meat based protein encourages cancer to grow, too. I went on a vegetarian, low glycemic diet with lots and lots and LOTS of veggies and low glycemic fruits (berries). I did a lot of juicing, salads, etc. We're talking more than 10 servings a day of each! The brighter the color, the higher the antioxidant and anticancer value of the nutrition.

- Excercise - do what you can as intensly as you can. You'll be in recovery for 6-10 weeks. It will take a LOT of time and effort to learn to walk, and then to learn to walk correctly. Don't forget to strengthen your core and arms. They'll atrophy or get close with all the bedrest. Studies have shown that the increase in body temperature and the raised metabolism of excercise slows or stops active cancer and helps prevent recurrences i nsome cases.

- I hate pills. But I took supplements anyway. reishi mushroom supplement was the best. Take the supplements for at least a year or two after being declared cancer free.

I'm including Dr. Sear's Protocol for you from his site... this, plus the reishi mushroom, selenium, and others..... really did make me feel a TON better.

1. Reduce stress.
2. Stay lean.
3. Increase exercise.
4. Limit dietary fat to 20 percent of total calories, with less than 10 percent of total calories as saturated fats. Eliminate hydrogenated fats.
5. Increase fiber to between 25 and 35 grams a day.
6. Eat lots of fresh fruits and vegetables.
7. Eat foods high in the antioxidants beta carotene, vitamin C and vitamin E.
8. Switch from red meat to seafood and soy products.
9. Eat foods high in calcium.
10. Consider daily supplements of the following:

* Vitamin C, 500 mg.
* Calcium, 500 mg.
* Flaxseed meal (ground flaxseed), 30 grams
* Acidophilus powder, 1 teaspoon
* Vitamin E, 200 IU
* Selenium, 100 mcg.



META, I'm here for you. Whatever you need. Call me!

naomipoe

answers
It is so easy to find the grief turn into anger when the doctor tells you the bad news... that if it spreads you're out of luck. The doctor is telling you the truth.... this is a truth you need to hear. And then to act on. Don't get mad, get active. That's what I did! Here's what you need to know:



1) Yes this cancer is extremely dangerous once it spreads, but it is a very non-agressive, slow moving cancer, so the chances are that if it's been caught early it will be easily contained and treated and that you will live for a very, very long time at a very, very high quality of life, even if they're unable to get it all. My doctor - an expert in this kind of cancer - said said that even in the worst case of metastizing cancer, I'd have 20 to 30 years of 'perfect health' on the experiential level before the cancer created illness enough to really do a number on me. Think of that. At 25 (when I was dealing with this, with young kids) that meant that even at worst case, this wouldn't really even start to ruin my quality of life until I was 45-55. Time enough to see my kids grow...

2) Surgery is your BEST option. According to my Oncologist, who was one of only THREE doctors in the US who specialize in this type of cancer.... chemo 'feeds' this cancer, and radiation isn't really effective. Honestly, I'd opt against radiation. The risk of developing a radiation-induced cancer later in life outweighs the 'benefits' of the radiation on the cancer. In the thigh, this should be treatable with surgery alone. I had it through the bloodstream due to a surgical error in the initial incision, and over 7 years later, I am CANCER FREE.


3) Because chemo and radiation are of limited or negative value, you really need to throw your full weight into prayer/medidation, diet, excercise, and supplements. I did. I'm supposed to be dead, remember (all through the bloodstream). I'm cancer free.
- prayer/meditation helps. Numerous studies at Harvard and John's Hopkins attest to statistically improved outcomes in double blind studies regardless of the faith of the prayers or the prayees. Whether you believe in anything or nothing, have someone do this for you.

- Go on an anti-cancer, limited carbohydrate, high fiber diet. Sugar feeds cancer. Meat based protein encourages cancer to grow, too. I went on a vegetarian, low glycemic diet with lots and lots and LOTS of veggies and low glycemic fruits (berries). I did a lot of juicing, salads, etc. We're talking more than 10 servings a day of each! The brighter the color, the higher the antioxidant and anticancer value of the nutrition.

- Excercise - do what you can as intensly as you can. You'll be in recovery for 6-10 weeks. It will take a LOT of time and effort to learn to walk, and then to learn to walk correctly. Don't forget to strengthen your core and arms. They'll atrophy or get close with all the bedrest. Studies have shown that the increase in body temperature and the raised metabolism of excercise slows or stops active cancer and helps prevent recurrences i nsome cases.

- I hate pills. But I took supplements anyway. reishi mushroom supplement was the best. Take the supplements for at least a year or two after being declared cancer free.

I'm including Dr. Sear's Protocol for you from his site... this, plus the reishi mushroom, selenium, and others..... really did make me feel a TON better.

1. Reduce stress.
2. Stay lean.
3. Increase exercise.
4. Limit dietary fat to 20 percent of total calories, with less than 10 percent of total calories as saturated fats. Eliminate hydrogenated fats.
5. Increase fiber to between 25 and 35 grams a day.
6. Eat lots of fresh fruits and vegetables.
7. Eat foods high in the antioxidants beta carotene, vitamin C and vitamin E.
8. Switch from red meat to seafood and soy products.
9. Eat foods high in calcium.
10. Consider daily supplements of the following:

* Vitamin C, 500 mg.
* Calcium, 500 mg.
* Flaxseed meal (ground flaxseed), 30 grams
* Acidophilus powder, 1 teaspoon
* Vitamin E, 200 IU
* Selenium, 100 mcg.

I'm here for you. Whatever you need. Call me!

naomipoe

trish2 said:

myxoid liposarcoma in left thigh
I was diagnosed with myxoid liposarcoma in april, 2010. The doctors want to do 3 rounds of chemo and 2 of radiation before the surgery to remove it. I have been reading all of these posts as well as other articles and see that they all say chemo has no effect on these tumors. The doctors are telling me that it is because micro cells could escape from tumor and travel to other parts of the body, such as the lungs. I am scheduled for chemo on the 17th of may. Really scared and questioning this again. Any info would be greatly appreciated.

go for surgery, not chemo! and frankly not radiation
Here's what you REALLY need to know:

1) Yes this cancer is extremely dangerous once it spreads, but it is a very non-agressive, slow moving cancer, so the chances are that if it's been caught early it will be easily contained and treated and that you will live for a very, very long time at a very, very high quality of life, even if they're unable to get it all.

2) Surgery is your BEST option. According to my Oncologist, who was one of only THREE doctors in the US who specialize in this type of cancer.... chemo 'feeds' this cancer, and radiation isn't really effective. Allow your doctor to do everything possible to get all the cancer in a wide excision - they'll tell you you may need an amputation. My doctor (YAW) performed a new surgery (I believe I was the first) that allowed for the leg to be saved. Essentially it's cutting the incision the opposite way they normally do. Seven years later, I'm still walking with my real leg... without a limp! Tell them to look it up! It's in the medical journals from 2002-2003 or somewhere around there.

Push through the pain of rehab therapy. Learn to walk right. You'll have a shark bite in the end, but if you use your leg correctly there's a good chance that will 'fill in' over the years - mine has.

3) This cancer is slow moving - did I say that already? Hear it again.

4) Because chemo and radiation are of limited or negative value, you really need to throw your full weight into prayer/medidation, diet, excercise, and supplements. I did. I'm supposed to be dead, remember (all through the bloodstream). I'm cancer free.
- prayer/meditation helps. Numerous studies at Harvard and John's Hopkins attest to statistically improved outcomes in double blind studies regardless of the faith of the prayers or the prayees. Whether you believe in anything or nothing, have someone do this for you.

- Go on an anti-cancer, limited carbohydrate, high fiber diet. Sugar feeds cancer. Meat based protein encourages cancer to grow, too. I went on a vegetarian, low glycemic diet with lots and lots and LOTS of veggies and low glycemic fruits (berries). I did a lot of juicing, salads, etc. We're talking more than 10 servings a day of each! The brighter the color, the higher the antioxidant and anticancer value of the nutrition.

- Excercise - do what you can as intensly as you can. You'll be in recovery for 6-10 weeks. It will take a LOT of time and effort to learn to walk, and then to learn to walk correctly. Don't forget to strengthen your core and arms. They'll atrophy or get close with all the bedrest. Studies have shown that the increase in body temperature and the raised metabolism of excercise slows or stops active cancer and helps prevent recurrences i nsome cases.

- I hate pills. But I took supplements anyway. reishi mushroom supplement was the best. Take the supplements for at least a year or two after being declared cancer free.

I'm including Dr. Sear's Protocol for you from his site... this, plus the reishi mushroom, selenium, and others..... really did make me feel a TON better.

1. Reduce stress.
2. Stay lean.
3. Increase exercise.
4. Limit dietary fat to 20 percent of total calories, with less than 10 percent of total calories as saturated fats. Eliminate hydrogenated fats.
5. Increase fiber to between 25 and 35 grams a day.
6. Eat lots of fresh fruits and vegetables.
7. Eat foods high in the antioxidants beta carotene, vitamin C and vitamin E.
8. Switch from red meat to seafood and soy products.
9. Eat foods high in calcium.
10. Consider daily supplements of the following:

* Vitamin C, 500 mg.
* Calcium, 500 mg.
* Flaxseed meal (ground flaxseed), 30 grams
* Acidophilus powder, 1 teaspoon
* Vitamin E, 200 IU
* Selenium, 100 mcg.

I'm here for you. Whatever you need. Call me!

naomipoe

Lady_Mac said:

Hi Everyone,
We just found
Hi Everyone,

We just found out yesterday that my husband has myxoid lipomasarcoma. What a way to start the weekend! We won't be able to see the oncologist until Tuesday and I am crying every two hours and my kids wonder what is wrong with me. What I've read so far from other sites make it seen so terminal. We won't have any information until his check up and I'm going crazy.

Jordan- My husband had his tumor above his right ankle kinda like you, but his doctor removed it before doing any tests or scans because he thought it was another type of growth that was common. "A strange looking thing" he tells me after removing the tumor from my husband's leg on Monday. Not what I wanted to hear. They also said that they would let us know the results of the biopsy the following day, but we didn't get the news until yesterday. I'm so mad. I'm glad to know that you are recovering well. I wish you positive thoughts.

I want to know if any one tried alternative medicines to complement the radiation/chemotherapy? Did you change your diet and how. Is there a book or two that anyone can recommend?

I'm going crazy and want to help my husband beat this any way possible. I've bought flax seeds, flax oil, oxygen drops, blue green algea, green foods, calcium supplements, vitamin D, and switching our cooking oils and diet to help balance his body's ph level to be more alkaline. If anyone has tried alternative therapy or any information about it please let me know.

Thank you all for letting me share this with you, I don't know who to talk to. When you talk to people who have not experienced this they can only say that the are sorry to hear it. I myself had a ovarian tumor removed before having my first child and have been lucky that it was benign.

i totally went this way, and i feel it made a difference
Lady Mac, read below for my experience with this. I went the alternative route because surgery is really the only truly effective option for the cancer of this type. A drastically changed my lifestyle and eating habits, and it was a world of good for me. Feel free to call me at any time.

cpat

Myxoid Round Cell Liposarcoma
I was just diagnosed this past week Septemember 1. 2010. went for CAT amd MRI's yesterday
It is located in my upper right thigh I have not had any symptoms had surgery biopsy on the 28th of August and path report said above dx. I am so very scared and hope I am doing the right things for this cancer. I have been referred to a Surgeon experienced in Soft tissue sarcoma and am getting mapped for radiation before surgery as the tumor is so close to my femure artery. the tumor is over 9 cm.
Please some one can you offer me advise and maybe a little peace? I am 52 female.

jgett

cpat said:

Myxoid Round Cell Liposarcoma
I was just diagnosed this past week Septemember 1. 2010. went for CAT amd MRI's yesterday
It is located in my upper right thigh I have not had any symptoms had surgery biopsy on the 28th of August and path report said above dx. I am so very scared and hope I am doing the right things for this cancer. I have been referred to a Surgeon experienced in Soft tissue sarcoma and am getting mapped for radiation before surgery as the tumor is so close to my femure artery. the tumor is over 9 cm.
Please some one can you offer me advise and maybe a little peace? I am 52 female.

just diagnosed
cpat, I just found out yesterday that I have myxoid liposarcoma in my left thigh. I have been referred to the University of Michigan Multidisciplinary Sarcoma Clinic (I live in Ann Arbor, MI). I'm also very scared. I don't feel like there is anything wrong with me so I'm really in shock and denial that I can possibly have cancer. I take comfort in knowing that I live in the best time in history, in terms of medical science, for something like this to happen to me. It's thoughts like this that keep me from crying non-stop all day. I hope your treatment goes well.

Jim

rootie2t

naomipoe said:

answers
It is so easy to find the grief turn into anger when the doctor tells you the bad news... that if it spreads you're out of luck. The doctor is telling you the truth.... this is a truth you need to hear. And then to act on. Don't get mad, get active. That's what I did! Here's what you need to know:



1) Yes this cancer is extremely dangerous once it spreads, but it is a very non-agressive, slow moving cancer, so the chances are that if it's been caught early it will be easily contained and treated and that you will live for a very, very long time at a very, very high quality of life, even if they're unable to get it all. My doctor - an expert in this kind of cancer - said said that even in the worst case of metastizing cancer, I'd have 20 to 30 years of 'perfect health' on the experiential level before the cancer created illness enough to really do a number on me. Think of that. At 25 (when I was dealing with this, with young kids) that meant that even at worst case, this wouldn't really even start to ruin my quality of life until I was 45-55. Time enough to see my kids grow...

2) Surgery is your BEST option. According to my Oncologist, who was one of only THREE doctors in the US who specialize in this type of cancer.... chemo 'feeds' this cancer, and radiation isn't really effective. Honestly, I'd opt against radiation. The risk of developing a radiation-induced cancer later in life outweighs the 'benefits' of the radiation on the cancer. In the thigh, this should be treatable with surgery alone. I had it through the bloodstream due to a surgical error in the initial incision, and over 7 years later, I am CANCER FREE.


3) Because chemo and radiation are of limited or negative value, you really need to throw your full weight into prayer/medidation, diet, excercise, and supplements. I did. I'm supposed to be dead, remember (all through the bloodstream). I'm cancer free.
- prayer/meditation helps. Numerous studies at Harvard and John's Hopkins attest to statistically improved outcomes in double blind studies regardless of the faith of the prayers or the prayees. Whether you believe in anything or nothing, have someone do this for you.

- Go on an anti-cancer, limited carbohydrate, high fiber diet. Sugar feeds cancer. Meat based protein encourages cancer to grow, too. I went on a vegetarian, low glycemic diet with lots and lots and LOTS of veggies and low glycemic fruits (berries). I did a lot of juicing, salads, etc. We're talking more than 10 servings a day of each! The brighter the color, the higher the antioxidant and anticancer value of the nutrition.

- Excercise - do what you can as intensly as you can. You'll be in recovery for 6-10 weeks. It will take a LOT of time and effort to learn to walk, and then to learn to walk correctly. Don't forget to strengthen your core and arms. They'll atrophy or get close with all the bedrest. Studies have shown that the increase in body temperature and the raised metabolism of excercise slows or stops active cancer and helps prevent recurrences i nsome cases.

- I hate pills. But I took supplements anyway. reishi mushroom supplement was the best. Take the supplements for at least a year or two after being declared cancer free.

I'm including Dr. Sear's Protocol for you from his site... this, plus the reishi mushroom, selenium, and others..... really did make me feel a TON better.

1. Reduce stress.
2. Stay lean.
3. Increase exercise.
4. Limit dietary fat to 20 percent of total calories, with less than 10 percent of total calories as saturated fats. Eliminate hydrogenated fats.
5. Increase fiber to between 25 and 35 grams a day.
6. Eat lots of fresh fruits and vegetables.
7. Eat foods high in the antioxidants beta carotene, vitamin C and vitamin E.
8. Switch from red meat to seafood and soy products.
9. Eat foods high in calcium.
10. Consider daily supplements of the following:

* Vitamin C, 500 mg.
* Calcium, 500 mg.
* Flaxseed meal (ground flaxseed), 30 grams
* Acidophilus powder, 1 teaspoon
* Vitamin E, 200 IU
* Selenium, 100 mcg.

I'm here for you. Whatever you need. Call me!

I too had a myxoid
I too had a myxoid liposarcoma 6 lbs tumor (took my bum and thigh muscles too) removed January 2010...I was diagnosed last september and couldnt believe I had cancer.
I think the comment Naomi made about "shark bite" is hilarious because that's what me and my husband call my left leg...it looks ugly but I have my own leg that I can walk on - I need a cane for stability when I'm out and about.... I'm still in the phase of being xrayed and scanned every 3 months but so far so good. I did have pre-op 25 radiation treatments to make sure they killed every bit of this cancer - I have incision healing problems but they are better than being dead from cancer....keep strong everyone...you can fight it and so can I

AMW

jgett said:

just diagnosed
cpat, I just found out yesterday that I have myxoid liposarcoma in my left thigh. I have been referred to the University of Michigan Multidisciplinary Sarcoma Clinic (I live in Ann Arbor, MI). I'm also very scared. I don't feel like there is anything wrong with me so I'm really in shock and denial that I can possibly have cancer. I take comfort in knowing that I live in the best time in history, in terms of medical science, for something like this to happen to me. It's thoughts like this that keep me from crying non-stop all day. I hope your treatment goes well.

Jim

Myxoid liposarcoma--diagnosed 1 week ago
I just found out 1 week ago that I have a myxoid liposarcoma in my right thigh. ( 48 yr old female) It's fairly small, thankfully , but like you , Jim, I'm totally in shock that I now have cancer. I have this huge anxiety and fear of the unknown ;what to expect with radiation and surgery ( the thought terrifies me) , and how it will impact my future health. I'm really grateful for sites like this that I feel I can connect and hear about how other people are dealing with this. Good luck to you all!


Ann

bellasbell

cpat said:

Myxoid Round Cell Liposarcoma
I was just diagnosed this past week Septemember 1. 2010. went for CAT amd MRI's yesterday
It is located in my upper right thigh I have not had any symptoms had surgery biopsy on the 28th of August and path report said above dx. I am so very scared and hope I am doing the right things for this cancer. I have been referred to a Surgeon experienced in Soft tissue sarcoma and am getting mapped for radiation before surgery as the tumor is so close to my femure artery. the tumor is over 9 cm.
Please some one can you offer me advise and maybe a little peace? I am 52 female.

Liposarcoma
I wanted to let you and the other recent post know that you be just fine after having sarcoma. About 2 1/2 yrs ago I was diagnosed with a tumor a bit over 9cm pretty big in my right thigh. I too was in shock, got bloodwork all the time and nothing showed. I started having a raised thigh(looked swollen) and alot of pain. Prior, I had numbness in my feet a bit and hard to get up off the floor. I kept telling my dr(she said nothing was wrong). If I wasnt persistent in taking matters into my own hands I wouldnt be here. I did chemo, then surgery, and two months of radiation(and went every day after work). Turns out Im having more issues now then back then due to scar tissue. But...Im in remission get tested every 3 months for the first 2 yrs now I can start going every 6 months. Depending on the size of the tumor, you can live a long life(Id check into all your options and make sure to get a dr. that knows about sarcoma) Luckily I live in Tampa and Moffit Hospital has a sarcoma clinic. There are only a few in the entire country-MD Anderson/in New York and I forgot the other one. Please try not to worry and keep us posted on your recovery.

jenmessley

jgett said:

just diagnosed
cpat, I just found out yesterday that I have myxoid liposarcoma in my left thigh. I have been referred to the University of Michigan Multidisciplinary Sarcoma Clinic (I live in Ann Arbor, MI). I'm also very scared. I don't feel like there is anything wrong with me so I'm really in shock and denial that I can possibly have cancer. I take comfort in knowing that I live in the best time in history, in terms of medical science, for something like this to happen to me. It's thoughts like this that keep me from crying non-stop all day. I hope your treatment goes well.

Jim

liposarcoma of thigh
I had a liposarcoma on my lower inner right thigh when I was 35-I will be 68 next month have use of my leg after surgery and radiation eliminated the cancer. have the shark bite,radiation burnt skin and painful leg swelling but no other troubles with it.