high grade, stage 4 sarcoma

antsueann
antsueann Member Posts: 1
edited March 2014 in Sarcoma #1
My sister (59 yrs. old) had emergency surgery about 4mos ago for a tumor on her intestines. She had a cholostomy and they thought they got it all. Original dx as GIST. Six weeks ago she had another emergency surgery. They found and took out another tumor around the original site and found another mass on the pelvic floor which they cannot remove because it is attatched to blood vessels. Now they say it is not gist, but undifferentiated sarcoma, high grade, stage IV. As soon as she is over an infection from the surgery she is to start chemo, hopefully next week. She is to receive ifosfamide (37% chance of shrinking the tumor) Usually they give ifosfamide and another chemo drug together and the chance is increased to 70%, but they don't think she can tolerate it.

I can't believe that this has happened so fast. If there is anybody out there with this diagnosis or cancer that grows this fast please respond as soon as possible. I have not been able to find any info on this anywhere.
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Comments

  • stevelamont
    stevelamont Member Posts: 3
    #2
    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
  • nash
    nash Member Posts: 1
    #3
    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

    please send me more information , my husband is in similar position, other than sarcom has been in excellent health, all his life, any advice support would be of great help
  • Koosa44
    Koosa44 Member Posts: 3
    #4
    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

    My brother has been diagnosed with aggressive spindle cell sarcoma. He survived an aortic aenurysm on Dec 6 after having excruciating pain in back, diagnosed by a catscan. After 3 weeks the pain was back. Dr. diagnosed a hematoma where the surgery was. 2 weeks later he has another catscan...and now they see something near his kidney. 3 weeks before it is a pinhole and now a lima bean. Biopsy show a malignancy and there is also a spot on his back. Going for 2nd opinion and bone biopsy...he is admitted to hospital with severe pain to stomach. Now there is something in intestines and the one by the kidney is a peach pit. Diagnoses: Spindel cell and only way to stop is chemo. 3 full days of chemo with Adriamycin (Doxorubicin), Cytoxan, Vincristine.
    We will do a blood test next week. Then a catscan to see if this is stopping it. Looking for a prognosis here. Any info you can give me would be appreciated. We are working around the clock on info...which there doesn't seem to be alot of. Any other drugs maybe?? Thanks!
  • cassilly
    cassilly Member Posts: 9
    #5
    I was dx'd 14 yrs ago with the same staging. There are now several sarcoma centers around the country, including MD Anderson, Sloan Kettering, Johns Hopkins. The drugs selected, depends on the
    pathology. I took those drugs, among others, and it was an intense regimen, lots of side effects. Sarcomas grow at different rates, I had tumor recur in that short of a time period. I would recommend gathering info regarding treatment options and utilize the major centers to get a 2nd opinion. Her MD can help you. There are sarcoma alliances and the NCI has sarcoma info as well. You can get some on the internet. Hope this is helpful.
  • cosby01
    cosby01 Member Posts: 1
    #6
    i had a stage three sarcoma and it happend so fast they had to amputate my leg to save my life i have to be checked out every three months or so to make sure that it has not spread to the lungs my orthopedic surgen thinks that they got it all but as you well know it can pop up anytime i hope the best for you and hope that everything will work out for your sister and god be with you
  • kellyradeke
    kellyradeke Member Posts: 5
    #7
    I am 36 yrs old and a mother of 3. I have a pleomorphic liposarcoma (high grade) I am between a 3 and a 4. I have not started treatment as of yet due to my just finding out about it 2 weeks ago. This thing is fast growing and very rare.I live in Alaska and they are sending me to seattle to see a specialist because they have not seen this enough to know how to treat it correctly. ITs pretty darn scarey....and I have yet to find someone who has what I have ....let me know if you find info relating to our similar situation??
  • sublignagirl
    sublignagirl Member Posts: 1
    #8
    cassilly said:

    I was dx'd 14 yrs ago with the same staging. There are now several sarcoma centers around the country, including MD Anderson, Sloan Kettering, Johns Hopkins. The drugs selected, depends on the
    pathology. I took those drugs, among others, and it was an intense regimen, lots of side effects. Sarcomas grow at different rates, I had tumor recur in that short of a time period. I would recommend gathering info regarding treatment options and utilize the major centers to get a 2nd opinion. Her MD can help you. There are sarcoma alliances and the NCI has sarcoma info as well. You can get some on the internet. Hope this is helpful.

    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????
  • mrmcd
    mrmcd Member Posts: 1
    #9
    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

    Please give me more
    Please give me more information. I have tumors in my abodomen, liver, spleen rib, etc. I am waiting to see what type of soft tissue sarcoma and then go to M.D. Anderson.
    Thanks
    mrmcd4206@sbcglobal.net
  • melissasweeney
    melissasweeney Member Posts: 1
    #10
    cosby01 said:

    i had a stage three sarcoma and it happend so fast they had to amputate my leg to save my life i have to be checked out every three months or so to make sure that it has not spread to the lungs my orthopedic surgen thinks that they got it all but as you well know it can pop up anytime i hope the best for you and hope that everything will work out for your sister and god be with you

    checking in
    Hello,

    I was just wondering how you are doing? My sister is in the same boat but choose to keep her leg. Since it has spread to her lungs and now her liver. She was told to seek a specialist in Spindle Cell Sarcoma.
  • jonnheather
    jonnheather Member Posts: 1
    #11
    cosby01 said:

    i had a stage three sarcoma and it happend so fast they had to amputate my leg to save my life i have to be checked out every three months or so to make sure that it has not spread to the lungs my orthopedic surgen thinks that they got it all but as you well know it can pop up anytime i hope the best for you and hope that everything will work out for your sister and god be with you

    how are you today. My mom
    how are you today. My mom had her leg amputated and not it is in the lungs.
    Just checking to see what if it reoccured in you.
  • Phil22
    Phil22 Member Posts: 7
    #12
    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

    Rhabdomyosarcoma
    My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt
  • Phil22
    Phil22 Member Posts: 7
    #13
    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

    Rhabdomyosarcoma
    My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt
  • Phil22
    Phil22 Member Posts: 7
    #14
    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

    Rhabdomyosarcoma
    My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt
  • Phil22
    Phil22 Member Posts: 7
    #15
    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

    Rhabdomyosarcoma
    My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt
  • stefanie_whaley
    stefanie_whaley Member Posts: 1
    #16
    kellyradeke said:

    I am 36 yrs old and a mother of 3. I have a pleomorphic liposarcoma (high grade) I am between a 3 and a 4. I have not started treatment as of yet due to my just finding out about it 2 weeks ago. This thing is fast growing and very rare.I live in Alaska and they are sending me to seattle to see a specialist because they have not seen this enough to know how to treat it correctly. ITs pretty darn scarey....and I have yet to find someone who has what I have ....let me know if you find info relating to our similar situation??

    My little sister was 24 when she found out she had stage 4 sarcoma cancer. within 2 weeks they had her at Barns hospital doing a massive surgery on her. The basically had to reconstruct her from the bellybutton to her thighs after the surgery. She was put on a high dose of chemo and medications, and had around 7 surgerys within 4 months. They told us that she had less than a year to live. she was rushed to the E.R. one night due to breathing problems and they rushed her to Barns hospital. There they put her on life support. After speaking with her doctor we had found out that he had been with holding information from us about where the cancer had spread to. We found out that it had spread to her kidneys 2 month prior and the doctor had not told us. I would have gave my sister 1 of my kidneys but the doctor said that she wouldn't make it through abother surgery. If he had told us when he found out in the 2 months prior I could have gave her 1 of my kidneys then and she would have made it through the surgery. But at the hospital while she is on life support they tell us that her kidneys are shutting down. We had a decision to make, we could leave her on life support while the cancer took over her body and all of her organs shut down or we could take her off of life support. I was crying and histarical. I wasn't ready to say bye to my little sister. I was getting ready to call me dad to tell his that he needed to come to the hospital and I saw on my phone that I had a text message. The message had to have been there for a couple of days and with everything going on I must have over looked it. I opened the text message to see what it said, and it was from my little sister. It said " I know either way I'm going to be okay. I wanna stay here on earth for along time but if I end up in heaven I'll be another angel with Jessie, Grandma, Grandpa, Carly and all them." She passed away that night. I sooooo miss her but she is always with me. From the time we found out she had cancer till the end was only 6 months.
  • Selina Meyer
    Selina Meyer Member Posts: 3
    #17
    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

    Any info would be appreciated

    Hi,

     

    My husband has been diagnosed with stage 4 sarcoma,  I would appreciate any information you could give me on the supplements that helpd your wife.

    My email is 1soonerfan13@gmail.com

    Thank you Selina 

  • Selina Meyer
    Selina Meyer Member Posts: 3
    #18
    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

    Any info would be appreciated

    Hi,

     

    My husband has been diagnosed with stage 4 sarcoma,  I would appreciate any information you could give me on the supplements that helpd your wife.

    My email is 1soonerfan13@gmail.com

    Thank you Selina 

  • kart2
    kart2 Member Posts: 1
    #19
    Pleomorphic high grade with bone mets

    Hi,

    I was diagnosed with Pleomorphic liposarcoma on march 2013. The tumor site was unusal and it was in my scrotum. Though i visited my urologist several times, he was very confident that it is not cancerous. So i took little time to remove it and it came back as sarcoma which shattered all my dreams. I am just 29 years old male. It is in stage 4 with bone mets.

    Trying to get help from doctor Richard from Duke for my condition.

  • t123
    t123 Member Posts: 24 Member
    #20
    kart2 said:

    Pleomorphic high grade with bone mets

    Hi,

    I was diagnosed with Pleomorphic liposarcoma on march 2013. The tumor site was unusal and it was in my scrotum. Though i visited my urologist several times, he was very confident that it is not cancerous. So i took little time to remove it and it came back as sarcoma which shattered all my dreams. I am just 29 years old male. It is in stage 4 with bone mets.

    Trying to get help from doctor Richard from Duke for my condition.

    keep looking for good treatment
    Moffitt Cancer Center in Tampa Fl is also a very good place to either seek treatment or find out about other center. Good luck. Dont give up!! I have angiisarcoma also. I send my support. Catherine
  • kodiak71
    kodiak71 Member Posts: 1
    #21
    kart2 said:

    Pleomorphic high grade with bone mets

    Hi,

    I was diagnosed with Pleomorphic liposarcoma on march 2013. The tumor site was unusal and it was in my scrotum. Though i visited my urologist several times, he was very confident that it is not cancerous. So i took little time to remove it and it came back as sarcoma which shattered all my dreams. I am just 29 years old male. It is in stage 4 with bone mets.

    Trying to get help from doctor Richard from Duke for my condition.

    your post

    hello,

    i'm a 2 time survivor of dedifferentiated liposarcoma.  2010 & 2013 (currently in recovery).  it can be beaten & don't let it shatter your dreams.  i thought the same in 2010 & i'm still fighting.  i received treatment at MD Anderson as nothing here in vegas would work.  MD Anderson is amazing if you can get there.  they have a whole team (doctors, nurses, surgeons) who just focus on sarcoma classifications.  i hope you get your treatment & fight through it.  stay strong, laugh every day.  mine was located in pelvis each time & have had damage done to testicles & colon.  if you have questions about MD Anderson, i can give you contact information directly for teh sarcoma doctors.

    regards.  scott

     

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