Myxoid liposarcoma in right thigh

13

Comments

  • nancyk
    nancyk Member Posts: 1

    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.

    This helps
    My husband has a ten-centimeter lesion that they think is a myxoid sarcoma. He got a biopsy this morning. The results should be known by the end of the week. He's too young for this to be happening, and our babies are too young for this to be happening, and I'm so scared. But reading this helps.
  • davlow06
    davlow06 Member Posts: 2
    nancyk said:

    This helps
    My husband has a ten-centimeter lesion that they think is a myxoid sarcoma. He got a biopsy this morning. The results should be known by the end of the week. He's too young for this to be happening, and our babies are too young for this to be happening, and I'm so scared. But reading this helps.

    Our story
    I constantly search for information regarding this type of cancer, and just came across this site today. If anyone is interested, I would like to share the facebook site I created to keep friends and family updated on her condition, and to help spread awareness of sarcoma cancer. It is: http://www.facebook.com/home.php?#!/pages/Barbaras-Battle/160604370625831

    Barbara passed away Monday, October 25, 2010, just over a month ago. We battled this cancer for exactly four years from the month she was diagnosed with it. I want to be able to let others know what she went through, and what WE went through, over the past four years. I would love to have more people join the facebook page that I plan to keep posting on to help spread awareness, and keep in touch with all of the people that supported us.

    I wrote a very long letter and posted it, but it didn't post for some reason and I didn't save it anywhere. I'm not going to re-write it now, but if anyone wants any information, you can get in touch with me through the facebook page. I have a lot of information on what she went through, and what our family went through during this four year battle.
  • jgett
    jgett Member Posts: 2

    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.

    good to hear
    That's very encouraging. I've now made it through surgery and radiation and they say everything looks good.
  • kellyken45
    kellyken45 Member Posts: 1
    jgett said:

    good to hear
    That's very encouraging. I've now made it through surgery and radiation and they say everything looks good.

    myxoid/round cell liposarcoma thigh
    Hi,
    I'm glad to hear you made it through surgery. Your case sounds very familiar to my own.
    I was diagnosed at age 45 with a myxoid/round cell liposarcoma of the left thigh in Dec of 2009.

    I had a radical resection done on Dec 22, 2009. My tumor measured 4 x 4 cm.
    It was superficial (actually located in the fat, external to my thigh muscle).
    The pathology said it was 20% round cell in a myxoid background. My doctors say that I have a very good chance of long term survival, some say about 70-80%, others have told me about 85% (they never seem to be consistent).

    Once my wound was healed I underwent 30 rounds of radiation therapy, everyday for 6 weeks. Atfer Rad TX I started Chemo at Moffitt Cancer Center in Tampa, FL.I had 5 rounds of MAI Chemo. (Doxorubicin, Ifosfamide and Mesna.) This type of chemo is given as a inpatient and takes 4 or 5 days.

    My doctors said that this particular type of sarcoma (myxoid/round cell) usually responds very well to chemotherapy. They said that the round cells were more susceptible to the effects of chemo than many other kinds of Sarcoma. At least that was some good news!
    I have read that a combination of Doxorubicin and Ifosfamide have shown to be the most effective chemo regimen for this kind of liposarcoma.

    So, now it's Feb 22, 2011 and I have had another round of scans (CT chest-abd-pelvis and the MRI on my left thigh)and all is negative for any new disease.

    I guess that makes me a survivor, 14 months NED!!
    I am still very nervous about this coming back. It's been just over one year since surgery and I feel fine now, it's the anxiety and fear of the unkown future that haunts me, just like everyone else.

    How are things going for you?? Did your docs recommend Chemo? I'm assuming they will be running the same Ct & MRI scans on you just like me, every 3 months.

    Kelly
  • scintillator
    scintillator Member Posts: 2
    davlow06 said:

    Our story
    I constantly search for information regarding this type of cancer, and just came across this site today. If anyone is interested, I would like to share the facebook site I created to keep friends and family updated on her condition, and to help spread awareness of sarcoma cancer. It is: http://www.facebook.com/home.php?#!/pages/Barbaras-Battle/160604370625831

    Barbara passed away Monday, October 25, 2010, just over a month ago. We battled this cancer for exactly four years from the month she was diagnosed with it. I want to be able to let others know what she went through, and what WE went through, over the past four years. I would love to have more people join the facebook page that I plan to keep posting on to help spread awareness, and keep in touch with all of the people that supported us.

    I wrote a very long letter and posted it, but it didn't post for some reason and I didn't save it anywhere. I'm not going to re-write it now, but if anyone wants any information, you can get in touch with me through the facebook page. I have a lot of information on what she went through, and what our family went through during this four year battle.

    Myxoid Liposarcoma - not the end of the world
    I just wanted to reassure people newly diagnosed with myxoid liposarcoma that the statistics are definitely on your side. In about 80% of cases it never comes back! Furthermore, even if it does metastasize there can still be a reasonable chance of a complete cure with surgery and first-line chemo, and even if incurable there is a good chance it will progress indolently. Finally, even when all else has failed trabectedin (Yondelis) has produced astoundingly good results in holding refractive metastatic myxoid liposarcoma at bay. So there's much more than just hope here - there's expectation.
  • angel55
    angel55 Member Posts: 2
    naomipoe said:

    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!

    I like to contact you
    Dear Naomipoe
    I like to talk to you regarding the liposarcoma. I was recently diagnosed with a liposarcoma low grade of the right thigh, and the more I read the more I believe I can treat this with ,yes the surgery and what your doctor recommended.
    I hope you can answer me.
    Evangelina

    [email protected]
  • angel55
    angel55 Member Posts: 2

    Myxoid Liposarcoma - not the end of the world
    I just wanted to reassure people newly diagnosed with myxoid liposarcoma that the statistics are definitely on your side. In about 80% of cases it never comes back! Furthermore, even if it does metastasize there can still be a reasonable chance of a complete cure with surgery and first-line chemo, and even if incurable there is a good chance it will progress indolently. Finally, even when all else has failed trabectedin (Yondelis) has produced astoundingly good results in holding refractive metastatic myxoid liposarcoma at bay. So there's much more than just hope here - there's expectation.

    myxoid liposarcoma on my right thigh
    Hi..
    I just read your post, and wonder if you can talk more about it, I was just recently diagnosed, had a surgery for a lipoma but then pathology report showed it was a liposarcoma with less than 10% of cells,

    I am being treated at Mayo clinic, and they offer radiation and surgery, althougth right now we dont know as this is very low grade and is unknown from the first surgery what is left.. the scans MRI PET and CT scans are all negative for tumors, or spreading of cancer cells of any kind.
    what else did you do as far as alternative and other medicine?
    how are you doing?
    I have chosen not to do radiation, and will stick to surgery with wider margins and then macrobiotics diet, meditation, yoga, less stress and turning my whole life around..

    please contact me

    Angelina
  • Doc123
    Doc123 Member Posts: 2
    Liposarcoma
    I found a small lump in my upper thigh groin area in October 2010 , I was studying for a Board exam so I waited 2 weeks to have a surgeon look at this after getting myself a CT scan which showed a solid mass. I am a 49 y.o practicing physician and was shocked to learn when my hospital pathologist called me while I was seeing patients, to tell me that he felt this was a myxiod lipo sarcoma. Like all of you my heart dropped into my stomach. My wife and I were devastated with this out of the blue diagnosis as I have always been very healthy, athletic and never smoked. I sought consultation at Sloan Kettering in NYC. I was seen by Dr. Samuel Singer who felt , I should have a wide excision only , as scans MRI and chest CT was negative. He did not recommend radiation therapy. Yes I had a shark bite wide excision all margins were clean. Dr. Singer stated that my tumor was 2.5 cm , with clean margins and negative distant ot local spread work up that chance for cure was 90 percent. Now it,s May 2011 I have recently started to have some pain in my groin near the surgical site . I am worried about this and contacted Dr. Singer. I am scheduled for MRI this week and praying this has not come back this fast. I have small kids and treat patients with cancer everyday . I am hoping that this works out, it tough being a physician and patient at the same time. Reading about the survivors has helped and inspired me to stay positive. I hope this post helps someone.
  • Doc123
    Doc123 Member Posts: 2
    Doc123 said:

    Liposarcoma
    I found a small lump in my upper thigh groin area in October 2010 , I was studying for a Board exam so I waited 2 weeks to have a surgeon look at this after getting myself a CT scan which showed a solid mass. I am a 49 y.o practicing physician and was shocked to learn when my hospital pathologist called me while I was seeing patients, to tell me that he felt this was a myxiod lipo sarcoma. Like all of you my heart dropped into my stomach. My wife and I were devastated with this out of the blue diagnosis as I have always been very healthy, athletic and never smoked. I sought consultation at Sloan Kettering in NYC. I was seen by Dr. Samuel Singer who felt , I should have a wide excision only , as scans MRI and chest CT was negative. He did not recommend radiation therapy. Yes I had a shark bite wide excision all margins were clean. Dr. Singer stated that my tumor was 2.5 cm , with clean margins and negative distant ot local spread work up that chance for cure was 90 percent. Now it,s May 2011 I have recently started to have some pain in my groin near the surgical site . I am worried about this and contacted Dr. Singer. I am scheduled for MRI this week and praying this has not come back this fast. I have small kids and treat patients with cancer everyday . I am hoping that this works out, it tough being a physician and patient at the same time. Reading about the survivors has helped and inspired me to stay positive. I hope this post helps someone.

    Follow up
    Thankfully my MRI came back negative as well as my CXR ..my discomfort has been attributed to my increased activity with my kids as the summer months are upon us. My wound also is contracting a bit , my physician states this is causing the lumpy area around the surgical site.
    Hopefully the next six months will be uneventful.
  • forgetmenot
    forgetmenot Member Posts: 4
    2 years and counting. i am 48.5years old female.
    2009 orthopedic oncologist took out my biceps femois shorthead muscle of right thigh. lump size of 11.5cm x 5.5.

    started out with a lump and ignored it for a while until my lower leg started to numb. mentioned to my gynocologist one day during routine girl checkup. she agreed that it might just be a fat lump but refered me to the chief surgeon. looked from the surface he also thought and said it is a simple office procedure to remove the lump but did agree with me that we should do some testing. he phoned on the day ct result(or was it mri i can't remember which) came back and said he won't be able to help but refered me to an orthopedic doctor. from his tone we kinds knew this is more than just a fat lump.

    an office biopsy was done on a friday and comments were "looked clear and not so bad". we got called in the following monday when the lab results came back and he said that the chances are good that all will be removed except one side where its touching the bone. with the lump he took out with large margin on all sides and scrapped the bone as clean as possible. general anethetic with a blocker to the leg. came home after 2 days with cruthes and bracing. i quit taking the painkiller after 2 days because it made me way too lethargic. pushed myself into the pool 2 weeks thereafter.

    my orthopedic oncologist said the chemo will not increase my chances. and we also consulted with an radiology oncologist and he mentioned that it will only increase my chance by 1% from 15% to 16%, so we elect no radiation.

    have not yet gone hiking but my walk appears normal with exception that my foot flairs out alittle and my left shoe wears out faster. the leg is holding more liquid and feeling weird and with shooting pain once in a while but surely these are all a given.

    my cut looks like a pantyhose line running down the back of my leg.
    now monitoring with: mri of the leg, ct of chest and abdomen, x-ray of chest. started out every 3months and now stretched out to 6months. from the ct reading they found that my thyroid is abnormal but thats a seperate story all together.

    my medical premium went from 340per month to 670 of the past 2 years, and starting july will be 900. so the insurance company must think that i will live on forever.

    yes, this has changed my mental state about life in general. and i prioritize my life and schedule it differenly now.
    yes, life is a crapshoot. all my life, i eat healthy, no smoking nor drinking..etc. ..friends comment that i should pick up few bad habbits and maybe i will live to 100...ha !

    hope the comment helps answer few questions. and feel free to write me at [email protected]
  • garv45
    garv45 Member Posts: 1

    myxoid/round cell liposarcoma thigh
    Hi,
    I'm glad to hear you made it through surgery. Your case sounds very familiar to my own.
    I was diagnosed at age 45 with a myxoid/round cell liposarcoma of the left thigh in Dec of 2009.

    I had a radical resection done on Dec 22, 2009. My tumor measured 4 x 4 cm.
    It was superficial (actually located in the fat, external to my thigh muscle).
    The pathology said it was 20% round cell in a myxoid background. My doctors say that I have a very good chance of long term survival, some say about 70-80%, others have told me about 85% (they never seem to be consistent).

    Once my wound was healed I underwent 30 rounds of radiation therapy, everyday for 6 weeks. Atfer Rad TX I started Chemo at Moffitt Cancer Center in Tampa, FL.I had 5 rounds of MAI Chemo. (Doxorubicin, Ifosfamide and Mesna.) This type of chemo is given as a inpatient and takes 4 or 5 days.

    My doctors said that this particular type of sarcoma (myxoid/round cell) usually responds very well to chemotherapy. They said that the round cells were more susceptible to the effects of chemo than many other kinds of Sarcoma. At least that was some good news!
    I have read that a combination of Doxorubicin and Ifosfamide have shown to be the most effective chemo regimen for this kind of liposarcoma.

    So, now it's Feb 22, 2011 and I have had another round of scans (CT chest-abd-pelvis and the MRI on my left thigh)and all is negative for any new disease.

    I guess that makes me a survivor, 14 months NED!!
    I am still very nervous about this coming back. It's been just over one year since surgery and I feel fine now, it's the anxiety and fear of the unkown future that haunts me, just like everyone else.

    How are things going for you?? Did your docs recommend Chemo? I'm assuming they will be running the same Ct & MRI scans on you just like me, every 3 months.

    Kelly

    Tx?
    Kelly your situation sounds alot like my husbands....he is 45 and had surgery last week and recovering well he is being treated at ucla the doc wants to do radiation and chemo Do you mind me asking where you had your treatments done and with what doctor? Thanks Debbie
  • SmedCon
    SmedCon Member Posts: 9
    angel55 said:

    myxoid liposarcoma on my right thigh
    Hi..
    I just read your post, and wonder if you can talk more about it, I was just recently diagnosed, had a surgery for a lipoma but then pathology report showed it was a liposarcoma with less than 10% of cells,

    I am being treated at Mayo clinic, and they offer radiation and surgery, althougth right now we dont know as this is very low grade and is unknown from the first surgery what is left.. the scans MRI PET and CT scans are all negative for tumors, or spreading of cancer cells of any kind.
    what else did you do as far as alternative and other medicine?
    how are you doing?
    I have chosen not to do radiation, and will stick to surgery with wider margins and then macrobiotics diet, meditation, yoga, less stress and turning my whole life around..

    please contact me

    Angelina

    Liposarcoma Treatment
    Angelina:

    I had the same situation to occur. Diagnosis = Lipoma and biopsy = liposarcoma. I have a second surgery with massively side margins and all looked good. I am three years out and found out a few weeks ago that is is back. They are wanting to amputate but I said, "Not so fast"! I am considering all options. I am told that Chemo is of no use but now they are suggesting radiation after surgery if I refuse amputation. Is there any body out there that has gone through limb amputation?

    David
  • ZiegenSauger
    ZiegenSauger Member Posts: 4

    2 years and counting. i am 48.5years old female.
    2009 orthopedic oncologist took out my biceps femois shorthead muscle of right thigh. lump size of 11.5cm x 5.5.

    started out with a lump and ignored it for a while until my lower leg started to numb. mentioned to my gynocologist one day during routine girl checkup. she agreed that it might just be a fat lump but refered me to the chief surgeon. looked from the surface he also thought and said it is a simple office procedure to remove the lump but did agree with me that we should do some testing. he phoned on the day ct result(or was it mri i can't remember which) came back and said he won't be able to help but refered me to an orthopedic doctor. from his tone we kinds knew this is more than just a fat lump.

    an office biopsy was done on a friday and comments were "looked clear and not so bad". we got called in the following monday when the lab results came back and he said that the chances are good that all will be removed except one side where its touching the bone. with the lump he took out with large margin on all sides and scrapped the bone as clean as possible. general anethetic with a blocker to the leg. came home after 2 days with cruthes and bracing. i quit taking the painkiller after 2 days because it made me way too lethargic. pushed myself into the pool 2 weeks thereafter.

    my orthopedic oncologist said the chemo will not increase my chances. and we also consulted with an radiology oncologist and he mentioned that it will only increase my chance by 1% from 15% to 16%, so we elect no radiation.

    have not yet gone hiking but my walk appears normal with exception that my foot flairs out alittle and my left shoe wears out faster. the leg is holding more liquid and feeling weird and with shooting pain once in a while but surely these are all a given.

    my cut looks like a pantyhose line running down the back of my leg.
    now monitoring with: mri of the leg, ct of chest and abdomen, x-ray of chest. started out every 3months and now stretched out to 6months. from the ct reading they found that my thyroid is abnormal but thats a seperate story all together.

    my medical premium went from 340per month to 670 of the past 2 years, and starting july will be 900. so the insurance company must think that i will live on forever.

    yes, this has changed my mental state about life in general. and i prioritize my life and schedule it differenly now.
    yes, life is a crapshoot. all my life, i eat healthy, no smoking nor drinking..etc. ..friends comment that i should pick up few bad habbits and maybe i will live to 100...ha !

    hope the comment helps answer few questions. and feel free to write me at [email protected]

    I had mine in the left thigh
    It was very large and very advanced.

    However we have the best doctors, several serious treatments and absolute chances for success.

    All cases are curable, all treatments are successful.

    Just go for it and stand for the fight.

    Paul from Florida
  • jeannie m
    jeannie m Member Posts: 1
    2police said:

    Thanks so much for your reply!
    I do have a couple of questions if you don't mind sharing. What location was your sarcoma in? was it diagnosed as a myxoid liposarcoma? Was it a large tumor/deep? My husbands tumor measured 7.7 x 6.5 x 2.2cm. They said it was superficial, and graded it at 1-2 of 3 or 2 of 4, not sure what all this means. It has been very overwhelming with all the decisions we have to make. This whole chemo thing is really scary. The Oncologist said they would put him on MAID?? this is the only one they would recommend for this type of sarcoma. But once again, there are no gurantees that this will even work. It seems like so much to go through when the studies done, have not even shown if it works. It think they gave a percent of 20% out of 100 people will be cured. Did you have any radiation for this? if so, how many treatments did they recommend? My husband has been told it would be 7 weeks M-F. What state were you treated in? did you see a specialist who dealt only with sarcomas? My husband is currently being seen at John's Hopkin's Hospital (we reside in Northern Virginia, and drive 2 hours to each appointment). Sorry for all the questions :-) I appreciate any info you can provide.
    Rhonda

    HELP!

    I'm not even sure if you will get this, but i need help. My little brother (37 at the time) had a tumor on his right thigh 2 years ago (5 pounder). He underwent radiation and they surgicaly removed it June 2011. The cancer is back, in his lungs and chest. There are 7 tumors that were discovered 3 weeks ago. (Sorry if I'm babbling, but I'm just lost) He has no health or life insurance. He lives in Montana and gets treatment at the Huntzman Center in Salt Lake City, while I live in Maryland. He's been single for years, and our parents have passed, so basicaly I'm it! I saw the words Metastatic Myxoid Liposarcoma for the first time today (I knew it was cancer, first time it had a name). He is getting his pick line inserted Monday. the chemo they have chosen is Ifosamide and Adriamyacin. I feel like the most useless helpless "sissie" on the planet. I've read more about this than i care to admit. i am flying out for his chemo and also to sign his POA, etc. What am i doing? What do i need to know? i don't even know what to ask you, other than can you help me get through this? Thank you more than words. Jeannie

  • Danelia
    Danelia Member Posts: 1
    cazzy said:

    Hi Mary,
    I am also a patient of Prof Choong with stage 4 metastatic myxoid liposarcoma 1st diagnosed in July 2005. My case is similar to your husbands. I am most interested to hear how your husband is going having started Dox chemo. I have not yet started but will probably mid next year.
    Thanks
    Caz.

    Myxoid liposarcoma in left thigh

    My son 3 years ago was diagnosed with a malignant tumor to left thigh.  My son had it excised and it was a size of an orange per his doctor.  My son never had chemo or radiation just had to go every 3 months for 2 years for MRI then the 3rd year every 3 months with MRI alternating with CT scans.  His was very low grade.  He is now 18 and has been cancer free for 3 years.  He is now every 6 months with CT scans.  He was able to finish strong playing football and basketball his senior year.  I am hearing all these stories online on chemo and my heart goes out to everyone and their families.  

    I wish everyone the best of luck.  My son still has 2 more years to reach his new milestone of 5 years.  God Bless and take care. 

    D

     

  • dianasoler
    dianasoler Member Posts: 1
    Myxoid Liposarcoma

    My mom was diagnosed with a stage 4 but encapsulated Myxoid Liposarcoma on her left leg, behind her knee. It grew so that it became circumferential surrounding the bone. Here in Puerto Rico they wanted to amputate, said it didn't respond to chemo or radiation (this without even being sure of what type of cancer it was). Thank god we went for a second opinion to MD Anderson Cancer Center in Houston. After chemo and radiation to reduce it Dr. Valerae Lewis removed the tumor and the bone, replaced it with a titanium implant and it's five years now that my mom is cancer free and walking with her two legs. There is hope friends. Get a second opinion.

  • annie43
    annie43 Member Posts: 1

    Myxoid Liposarcoma

    My mom was diagnosed with a stage 4 but encapsulated Myxoid Liposarcoma on her left leg, behind her knee. It grew so that it became circumferential surrounding the bone. Here in Puerto Rico they wanted to amputate, said it didn't respond to chemo or radiation (this without even being sure of what type of cancer it was). Thank god we went for a second opinion to MD Anderson Cancer Center in Houston. After chemo and radiation to reduce it Dr. Valerae Lewis removed the tumor and the bone, replaced it with a titanium implant and it's five years now that my mom is cancer free and walking with her two legs. There is hope friends. Get a second opinion.

    Myxoid Liposarcoma

    Hi dianasoler,

    Your story both scares and encourages me. Our son, 46 also lives in Puerto Rico and was diagnosed with a large myxoid liposarcoma on his right thigh in September, 2015. This is roughly 7 inches long and is encapsulated with no metasties detected. He has thus far undergone 6 rounds of chemo, which did not reduce the size.  Radiation was begun today.  He has requested use of Yondelis, (tribectadin) which the FDA authorized for use in the in USA in Oct. 2015 only for liposarcoma and leiomyosarcoma. His oncologist, Dr. Jorge Lugo Rodriguez Lugo, who practices at Torre Med San Lucas in Ponce, is in agreement to this, but our son's insurance (First Medical) has declined to cover it.  Dr. Lugo has referred a request to a foundation to cover it, but we haven't heard the decision yet. Our son does have a cancer rider, Aflac, but I am not sure how that works in this case.  Dr. Lugo sent our son to see a surgeon in San Juan, Dr. Juan Bibiloni, who wants to get this tumor reduced prior to surgery in order to save the leg. My husband and I live in New York State and have researched this beast of a disease. Have hope for Yondelis doing the job.  Also NanoKnife which I understand is not offered in PR.  It is here in the US and in NY at Rochester University Hospital.  Just joined this site today.  Wondering specifically who your mothers providers were, if you wish to share that, and what you did about insurance in the states? Has anyone on this site been treated with Yondelis or known of someone?  My research indicates it is effective particularly in this type of cancer. Any info very appreciated. Thanks.

  • jeannie m said:

    HELP!

    I'm not even sure if you will get this, but i need help. My little brother (37 at the time) had a tumor on his right thigh 2 years ago (5 pounder). He underwent radiation and they surgicaly removed it June 2011. The cancer is back, in his lungs and chest. There are 7 tumors that were discovered 3 weeks ago. (Sorry if I'm babbling, but I'm just lost) He has no health or life insurance. He lives in Montana and gets treatment at the Huntzman Center in Salt Lake City, while I live in Maryland. He's been single for years, and our parents have passed, so basicaly I'm it! I saw the words Metastatic Myxoid Liposarcoma for the first time today (I knew it was cancer, first time it had a name). He is getting his pick line inserted Monday. the chemo they have chosen is Ifosamide and Adriamyacin. I feel like the most useless helpless "sissie" on the planet. I've read more about this than i care to admit. i am flying out for his chemo and also to sign his POA, etc. What am i doing? What do i need to know? i don't even know what to ask you, other than can you help me get through this? Thank you more than words. Jeannie

    Sarcoma support

    Hi Jeannie, I am sorry that no one has responded to you until now. I do hope that your brother is still with us, fighting the good fight. I had a similar diagnosis in 2007 when I was 23, and also had multiple recurrences that had metasized to my lungs. I was also treated with Ifosfamide with Mesna, and for the most recent reccurence I had gemcitabine and taxotere and doxil.I've had my lung removed, but thank god am now 4 years in remission. Please let me know if you want to connect or if you just need to talk with someone.

  • naomipoe said:

    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!

    Chemo and Complimentary methods

    Dear naomipoe,

    I admire your enthusiasm and breadth of knowledge on alternative remedies, but I don't think it's wise to advise people to avoid chemotherapy and/or radiation. Yes, both are incredibly toxic, but that is why they are a last resort not complimentary. I was 23 when I was diagnosed with a high-grade undifferentiated pleomorphic sarcoma (also called Malignant Fibrous Histiocytoma), which presented as a 7cm mass embedded in my right thigh. At the time, I was a vegetarian, living a healthy lifestyle in San Diego and studying for a Master's Degree in Chinese Medicine (acupuncture and herbology). So I know all the benefits of alternative medicine.

    The problem with sarcomas in particular, is that we don't know much about them...there isn't the same investment in research and development of new therapies in sarcoma as compared to breast cancer or leukemia, so we aren't often presented with a "sarcoma-specific" chemo drug, but one that was perhaps designed for ovarian cancer for example. After my first diagnosis, I underwent radical resection surgery at Memorial Sloan Kettering by one of the best surgical oncologists in the country. The surgeon got clean margins, all looked good. So when I was given the choice as to whether to get radiation or not, I opted out, thinking about the damage it would do to my femur and ovaries. That "opting out" was what possibly contributed to a devasting recurrence and metastasis to my lungs. When my oncologist presented me with the options, even though I knew that Ifosfamide with mesna at the doses they were suggesting might just kill me, or bring me close to death, I took that risk. Because that's what we have to do.

    The key is trusting completely in your oncologist, and of course having faith that God will see you through. After multiple blood transfusions, infections, weight loss, etc etc and all the horros of chemo, I vowed I would never allow chemo to enter my system again. But it did kill the cancer cells in my lungs. And I lived almost another 2 years without cancer in my life. When it came back a third time, my oncologist essentially told me to make arrangements, say goodbye, and prepare for death. Because in 1 month, a tumor the size of a lemon developed in my lungs in the space where they had previously done a wedge resection. My doctor said he would like to try a regiment of gemcitabine and taxotere. It was tempting to just say no, but then I thought of all the suffering that people have undergone before me when all the odds were against them. I thought about my family, and the sacrifices they had made to give me a second, third chance. I thought about the pain that they would endure if I gave up and just tried to live "cleanly", adhering to special diets and supplements while the cancer continued to ravage my body. So I had faith in my doctor and in the process, and gave my body over to medicine and ultimately to god. And it worked. It might not be the same for others, but in my case the "shot in the dark" chemo worked and completely killed the tumor. After having a full lobectomy and completing the gem/tax regiment, it's been 4 years with clean scans. Of course I have ongoing issues as a result of the chemo and radiation, I lost the ability to have children, I have constant gastrointestinal problems, I have weakness and fatigue, and so it goes on...but I am alive. My purpose now is to make the most of this life, ailments and all. 

    Just like my decision to go all in with harsh chemo treatments worked for me, your choice to go the "natural" route worked for you. I admire you for the faith in that path and your courage to take that risk, but caution against your suggesting others to follow you. Your recommendations are common sense ones to anyone wanting to live a clean, healthy life and shouldn't be viewed as an alternative to medical treatments, but as complimentary to give your body and mind the best possible fighting chance it has against this disease. 

  • sweettalk224
    sweettalk224 Member Posts: 1
    edited March 2019 #61
    Myxoid Lyposarcoma

    I had this cancer removed from my left thigh 6 years ago. Five years is the first milestone. I had surgery then radiation. I chose not to do the chemo because the odds are low and in my case, they'd have to hospitalize for 5 days and put a stent in my chest, No thanks. I first I got MRIs every 3 months, then every 6 months now I do the MRIs 1 time a year. This includes an MRI of my thigh and of my spine and a pt scan of my lungs--since these are the areas it likes to metastasize to. A positive attitude and self-care help.