high grade, stage 4 sarcoma

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  • Ceasarrincon93
    Ceasarrincon93 Member Posts: 1
    #42
    Stage four synovial sarcoma

    my sarcoma started out I’m my knee it took them a year to diagnose me and when they did i had got set up for surgery but before they were giving me scans an they kept coming back clean and the day before my surgery they found a spot in my lung it was a bummer I had did radiation and it shrunk a little theN I did the surgery and after I did 6 rounds of chemo Diox and and another one. After I finished the module in my leftl was stable then started to grow over months it grew to 6mm then they did another surgery and took it out of my lung the surg said I could survive it but havnt talked to my oncologist yet does anyone know or is in the same situation as me ? I worry every day I have kids I’m 24 years old and it’s been a week sinc surgery has anyone survived this before or lived a long time after the surgery?

  • gabbycat18
    gabbycat18 Member Posts: 1
    #43
    sublignagirl said:

    brother has it as well
    My brother was diagnosed in May with undifferentiated high grade pleomorphic liposarcoma....

    I am looking for other surviving patients...anybody out there????

    with undifferentiated high grade pleomorphic -does laser help

    My son, 43 dianosed with matatstatic undiferentiated high grade pleomorphic, and would like to know if anyone has had laser treatement to lung, and other areas his has gone, like spinal, leg bones, pelvis and in the retro pereneal that has spread to lung, spine, leg bones and pelcis.  Looking for help or information. Thank you

     

     

     

     

     

  • Jake Eliason
    Jake Eliason Member Posts: 1
    #44
    Stage 4 Lyposarcoma

    My wife 42 years old has been just recently diagnosed with Lyposarcoma.

    MRI found a 22cm by 10cm tumor on her hip. Up until a month ago it was dismissed as Bursitis and just treated with physical therapy. She is a healthy active working mom of two teenagers. We are currently undergoing first round of Chemo, Doxi and ifos. We are at Rochester Mayo Clinic. Orthopedic surgeon doesnt recommend surgery since it wont change the course of the disease. She has multiple nodes in her lungs. If chemo doesntt work why cantg they remove the original tunor?? We have asked and all we get is it won't change the course of the disease. We need help! We are open to amputation whatever it takes. Anyone with similar situation please give us some insight. 

     

  • Sadierose91
    Sadierose91 Member Posts: 1
    edited June 2018 #45
    stevelamont said:

    Hi,

    My wife is recovering from extensive soft tissue sarcoma. She had 15 or more tumours and was also offered Ifosfamide and Doxorubicin in combination as a last resort. She had to stop the Ifos after one round and continued with Dox for 5 more rounds. This was easy compared with combination. She also did supplements to help with nourishment and side effects e.g. flax oil, hydrazine sulfate,co-q-10 to protect heart.

    She is now clear for last 6 mths.

    I can give you lots more information if you want.

    Steve Lamont
    steve.lamont@pyinna.co.uk

    hello

    Hello, 

     

    I am very happy to hear such amazing news. I was wondering if the tumors were located in her lungs as well? My boyfriend was diagnosed with Stage 4 sarcoma in the lungs qith plerual effusion. They said it was pushing on his windpipe. With a healthy diet and chemotherapy and supplements would help him? Could you give you more information.

  • ccp
    ccp Member Posts: 2
    #46
    stevelamont said:

    Hi,

    My wife is recovering from extensive soft tissue sarcoma. She had 15 or more tumours and was also offered Ifosfamide and Doxorubicin in combination as a last resort. She had to stop the Ifos after one round and continued with Dox for 5 more rounds. This was easy compared with combination. She also did supplements to help with nourishment and side effects e.g. flax oil, hydrazine sulfate,co-q-10 to protect heart.

    She is now clear for last 6 mths.

    I can give you lots more information if you want.

    Steve Lamont
    steve.lamont@pyinna.co.uk

    Epithileoid Sarcoma

    Hi Steve,

     

    Reading your post about your wife, my borther just got diagnoised with epithelioid angiosarcoma. How is your wife doing now? Anything you learned through this process? Natural supplements or any advice would be greatly appreciated. How is your wife doing now?

  • sgallag54
    sgallag54 Member Posts: 1
    #47
    stevelamont said:

    Hi,

    My wife is recovering from extensive soft tissue sarcoma. She had 15 or more tumours and was also offered Ifosfamide and Doxorubicin in combination as a last resort. She had to stop the Ifos after one round and continued with Dox for 5 more rounds. This was easy compared with combination. She also did supplements to help with nourishment and side effects e.g. flax oil, hydrazine sulfate,co-q-10 to protect heart.

    She is now clear for last 6 mths.

    I can give you lots more information if you want.

    Steve Lamont
    steve.lamont@pyinna.co.uk

    ex-husband sarcoma

    My ex-husband was recently diagnosed with Stage 4, high grade soft tissue sarcoma on Valentine's Day 2019.  He broke his femur in November which triggered a series of events leading up to his diagnosis.  He also has cirrhosis from drinkng over the years.  He has been extremely ill with this cancer for the past couple of months.  His ascites needs constant draining of the lymphatic fluid that continues to build rapidly.  His oncologist did not recommend any treatment as he was afraid it would kill him.  Instead, he put him on hospice.  I'm wondering if it's worth a second opinion considering how rapidly he is declining.  He really hasn't even had a chance to fight.

    He has over 20 tumors in his liver and stomach, along with the cirrhosis and ascites.  

  • godisgoodallthetime
    godisgoodallthetime Member Posts: 2
    #48
    stevelamont said:

    Hi,

    My wife is recovering from extensive soft tissue sarcoma. She had 15 or more tumours and was also offered Ifosfamide and Doxorubicin in combination as a last resort. She had to stop the Ifos after one round and continued with Dox for 5 more rounds. This was easy compared with combination. She also did supplements to help with nourishment and side effects e.g. flax oil, hydrazine sulfate,co-q-10 to protect heart.

    She is now clear for last 6 mths.

    I can give you lots more information if you want.

    Steve Lamont
    steve.lamont@pyinna.co.uk

    sarcoma

    Can you tell me about her experience with chemotherapy?  How bad were her side effects?

  • godisgoodallthetime
    godisgoodallthetime Member Posts: 2
    #49
    high grade sarcoma

    i had a sarcoma in my leg that was removed, then radiation.  Now i am scanned in lungs and leg every 3 months for signs that it is back.  If it comes back, chemo is the option.  Anyone experience this chemo want to talk to me about it?

  • _gsld
    _gsld Member Posts: 1
    edited June 2019 #50
    Stage 4 clear cell sarcoma

    My sister, 27, was very recently diagnosed with stage 4 clear cell sarcoma. She is now this week starting her 3rd cycle of chemo and scheduled for imaging study after this cycle. Along with the chemo, she is scheduled radiation everyday as well. Hopefully some big difference from when she was first diagnosed. Primary tumor is in her lumbar spine and has mets to lungs appearing as small modules in each lobule and also on right and left hip bone. Anyone else diagnosed with this or know someone and how are they doing? My sister prior to chemo was barely able to walk a few feet without excruciating pain because of the tumor compressing her spine. After just the first cycle of chemo, she started to tolerate walking and felt less pain.

     

    Thank you

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