high grade, stage 4 sarcoma

2

Comments

  • skyhappy
    skyhappy Member Posts: 2
    #22
    kodiak71 said:

    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

     

    Hi Scott, 

    Recently, I found out that my cousin has stage 4 Sarcoma cancer. Can you please give me additional details and contact info for MD Anderson? 

    I would like to help my cousin in any way that I can. Your information would be greatly appreciated. 

    Thanks. 

    -Darren- 

  • skyhappy
    skyhappy Member Posts: 2
    #23
    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

    Hi Steve, 

    My cousin has stage 4 Sarcoma cancer. I would appreciate any info regarding the supplements that your wife used and the details of the treatment. 

    My email is: skyblue_dc@hotmail.com

    Thanks. 

    -Darren- 

     

  • RobbinBolyard
    RobbinBolyard Member Posts: 1
    #24
    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

    ???

    What type of sarcoma does she have? My husband has stage 4 medistatic meshychimal chrondosarcoma. He is in hospice care right now. The doctors say there is nothing left they can do for him since it is now in his bone marrow And the chemo did not work. 

  • SAVEMYCAREBEAR
    SAVEMYCAREBEAR Member Posts: 1
    #25
    Please send me information

    My girlfriend was diagnosed 2 years ago with a tumor in the small intestine and on December 15, 2015 she went in for a colonoscopy and that's when we found out it spread to her colon within 2 years it's spread so fast she's been told it's stage 4 gist tissue sarcoma the chemotherapy pills started working but are no longer working and they have told us there's nothing else they can do for her I want to know if anyone can give me any kind of information on support groups or anything else. I'm having a difficult time dealing with this.

  • danishizhar_hassan
    danishizhar_hassan Member Posts: 1
    #26
    Soft Tissue Sarcoma- Stage 4
    My Father in law is diagnosed with Myxoid Chondrosarcoma originated on buttock and which has now traveled to lungs. There are about 12-15 lesions between 6mm - 14mm. Doctors have controlled the hip area cancer with Radiations but they have told us that they can not treat it anymore because it has traveled to lungs now. 
     

    Doctors here have not mention any laser treatment to us at all but I have searched on internet and found that many people have been using laser treatment to remove the cancer cell from lungs. So if anyone here has more information regarding this or anyother suggestions kindly let us know.

     

    Any kind of help is appreciated.

     

    Regards

  • OMEAK64
    OMEAK64 Member Posts: 1
    #27
    kodiak71 said:

    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

     

    dedifferentiated liposarcoma

    looking for conversation about this cancer.  I have it.  Cussy

  • donna1720
    donna1720 Member Posts: 7
    #28
    stefanie_whaley said:

    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.

    What a sad story. I am so

    What a sad story. I am so sorry you lost your sister.

  • donna1720
    donna1720 Member Posts: 7
    edited October 2016 #29
    Anyone still on the board

    Anyone still on the board with undifferentiated polymorphic sarcoma? My husband has had surgery on the thigh. High grade, deep seated. He's going to do radiation and some holistic. 

  • Brenwax
    Brenwax Member Posts: 1
    #30
    donna1720 said:

    Anyone still on the board

    Anyone still on the board with undifferentiated polymorphic sarcoma? My husband has had surgery on the thigh. High grade, deep seated. He's going to do radiation and some holistic. 

    My husband was diagnosed with

    My husband was diagnosed with Undifferentiated pleomorphic sarcoma in his left thigh in January. 5 weeks radiation and surgery. I'd love to chat about how treatment went/ is going for you.  

  • Dawn80
    Dawn80 Member Posts: 2
    #31
    Ongoing treatment - UPS stage 4

    Hi, 

    I am currently going through a treatment of my stage 4 undifferentiated pleomorphic sarcoma.

    I was diagnosed with Sarcoma in January this year and went through 5 weeks of radiation followed by a left thigh resection in May. Unfortunately, the sarcoma mets were found in my lungs in July. I am going to have a left lung thoracotomy this week to remove the lesions on left lung. Please feel free to write to me for any questions / information.

     

    I believe I can survive and beat this disease. God is with us 

    . 

  • carolann710
    carolann710 Member Posts: 8
    #32
    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??

    how are you

    kellyradeke

    HOw are you ?

    Ihave a liposarcoma high grade ...just found out

     

  • carolann710
    carolann710 Member Posts: 8
    edited October 2017 #33
    kodiak71 said:

    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

     

    dedifferentiated liposarcoma

    Kodiak71

    I had surgery for my liposarcome 2 weeks ago......can i still go to sloan ?

     

  • carolann710
    carolann710 Member Posts: 8
    #34
    OMEAK64 said:

    dedifferentiated liposarcoma

    looking for conversation about this cancer.  I have it.  Cussy

    LIPOSARCOMA

    OMEAK64

    hELLO

    jUST DIAGNOSED AND 2 WEEKS PAST SURGERY ........DONT KNOW WHATS NEXT CAN WE TALK ?

     

     

  • carolann710
    carolann710 Member Posts: 8
    #35
    Dawn80 said:

    Ongoing treatment - UPS stage 4

    Hi, 

    I am currently going through a treatment of my stage 4 undifferentiated pleomorphic sarcoma.

    I was diagnosed with Sarcoma in January this year and went through 5 weeks of radiation followed by a left thigh resection in May. Unfortunately, the sarcoma mets were found in my lungs in July. I am going to have a left lung thoracotomy this week to remove the lesions on left lung. Please feel free to write to me for any questions / information.

     

    I believe I can survive and beat this disease. God is with us 

    . 

    unfifferentated plemorphic sarcoma

    dawn, Ihave the same diagnosis stage 3 ...left thigh hip...........4mm lung met ..dont know what it is ...so far......had surgery , now waiting for radiation and chemo.......the sugeron said she got it all out, however, I was at a non sacoma hospital......so who knows what she really did....I am in michigan and now planning to go to the university of michigan.....I feel scared and alone of the unknows

    just have my surgery oct 4, 2017

     

  • carolann710
    carolann710 Member Posts: 8
    #36
    Dawn80 said:

    Ongoing treatment - UPS stage 4

    Hi, 

    I am currently going through a treatment of my stage 4 undifferentiated pleomorphic sarcoma.

    I was diagnosed with Sarcoma in January this year and went through 5 weeks of radiation followed by a left thigh resection in May. Unfortunately, the sarcoma mets were found in my lungs in July. I am going to have a left lung thoracotomy this week to remove the lesions on left lung. Please feel free to write to me for any questions / information.

     

    I believe I can survive and beat this disease. God is with us 

    . 

    sacoma ups stage 3

    hi dawn, hope you get this and we can talk

     

  • Dawn80
    Dawn80 Member Posts: 2
    #37
    carolann710 said:

    sacoma ups stage 3

    hi dawn, hope you get this and we can talk

     

    Ongoing treatment - UPS stage 4

    Hi Carol,

    Dropped you a private message. 

  • MaryCatherine227
    MaryCatherine227 Member Posts: 2
    edited December 2017 #38
    Seeking Advice- Pleomorphic liposarcoma

    As of this week, I learned my husband (who is 37 years old and otherwise very healthy) has been diagnosed with high grade pleomorphic liposarcoma. He had a 3.5 x 2.9 x 3.1 tumor removed on Nov. 22nd. He first noticed the tumor under his arm (arm pit) at the beginning of September 2017. I was very optimistic at first, but today we learned that the sarcoma is a pleomorphic which is aggressive as I am researching. He has been referred to a sarcoma specialist center at Stanford hostpital, but now we have to wait. 

    I'm looking to hear from anyone who has survived this type of sarcoma cancer and what their treatments paths were, if there was recurrance, etc. 

    Thank you very much and God bless all. 

    Mary-Catherine 

  • MaryCatherine227
    MaryCatherine227 Member Posts: 2
    #39
    Brenwax said:

    My husband was diagnosed with

    My husband was diagnosed with Undifferentiated pleomorphic sarcoma in his left thigh in January. 5 weeks radiation and surgery. I'd love to chat about how treatment went/ is going for you.  

    Hi Brenwax,

    Hi Brenwax,

    I wanted to get in touch to see how your husband was doing? My husband was just diagnosed with pleomorphic liposarcoma after a lump was removed from his arm pit. The doctors thought it was a benign lump, but it tested posted for this type of cancer. 

    He is on the waitlist now to see a specialist at Stanford hositpal in California. The waiting is proving to be excruciating as we don't know how much further the tumor spread in his body before it was removed.

    Thank you and positive thoughts to your husband. 

    Mary-Catherine 

  • StephenL
    StephenL Member Posts: 1
    #40
    carolann710 said:

    unfifferentated plemorphic sarcoma

    dawn, Ihave the same diagnosis stage 3 ...left thigh hip...........4mm lung met ..dont know what it is ...so far......had surgery , now waiting for radiation and chemo.......the sugeron said she got it all out, however, I was at a non sacoma hospital......so who knows what she really did....I am in michigan and now planning to go to the university of michigan.....I feel scared and alone of the unknows

    just have my surgery oct 4, 2017

     

    U p s

    carol,  my husband has the same diagnosis...but the main tumor is in his abdomen with nets in his liver.  How is it going with you...did the universe if Michigan help?

  • JellyFish
    JellyFish Member Posts: 1
    #41
    Soft Tissue Sarcoma/ Stage 4

    Hi,

    I’m 57 and was diagnosed with terminal STS in June of 2017.  I was told, according to what statistics they had, that I had about 2 years to live.  

     

    I have reached my life limit of “the red devil” chemo and am now doing Lartruvo, three week cycles, in my port.  I feel ok other than I tire easily and I ache...bones, muscles, joints...from my waist to my feet.  In the evening it’s the worst.

     

    I‘m here if anyone needs to talk.

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