angiosarcoma

slainte
slainte Member Posts: 3
edited March 2014 in Rare and Other Cancers #1
My brother 27 years old has angiosarcoma. Anyone out there have experience with this cancer?

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the CSN website to see if others have had similar experiences. You can do this by putting search words, such as "angiosarcoma," in the search bar. If you find someone you would like to contact, you can do so through the internal CSN email system. For more information on CSN email and other CSN functions, click on the "Help" link at the top of this page. I wish your husband the best on his treatment.

    Take care and be well,

    Dana
    CSN Dana
  • bobbieevans
    bobbieevans Member Posts: 1
    #3
    I have radiation induced angiosarcoma of the breast. It seems that we are a very rare group. I was diagnoised in Febuary 2006 after 6 months of different doctors and antibotics. It was finally diagnoised through a biopsey, High Grade stage 111. I finally found a surgeon where I live that is saying I will have to have a simple masdectomy with a skin graft and possible radiation. I do not know if the radiation will be possible as I had radiation before on the same area. I am hearing that chemo does not work well with this type of sarcoma, but I feel that each situation would be different. There are a few people that have angiosarcoma on http://www.sarcomaalliance. God Bless and Good Luck, I would like to hear back from you
  • slainte
    slainte Member Posts: 3
    #4
    bobbieevans said:

    I have radiation induced angiosarcoma of the breast. It seems that we are a very rare group. I was diagnoised in Febuary 2006 after 6 months of different doctors and antibotics. It was finally diagnoised through a biopsey, High Grade stage 111. I finally found a surgeon where I live that is saying I will have to have a simple masdectomy with a skin graft and possible radiation. I do not know if the radiation will be possible as I had radiation before on the same area. I am hearing that chemo does not work well with this type of sarcoma, but I feel that each situation would be different. There are a few people that have angiosarcoma on http://www.sarcomaalliance. God Bless and Good Luck, I would like to hear back from you

    Hi bobby,
    My brother is 27 years old and has been diagnosed with angiosarcoma last August 2005. It orginated in his spleen and he has metastasis in his liver. They removed his spleen and he has received 6 sessions of chemotheropy. They said after that it had reduced and he was to come back in 3 months. Since the last session in december he got pain in his stomach and has had another operation to remove adhesions as a result of first operations. He is now at home recoving from that but since last week he has had a pain in his shoulder. The doctor was there today and wants to send me in for a scan as he says it might be coming from his liver.
  • offutt9
    offutt9 Member Posts: 88 Member
    #5
    Hi!!! I have angiosarcoma of the liver, It is very rare. I was dx in March 2003. I have had to RFA's and chemo.... and I am about to start another type of chemo. Please feel free to email me if you want to talk about this. What type of angiosarcoma does he have? In Gods Love Barbara
  • t123
    t123 Member Posts: 24
    #6
    bobbieevans said:

    I have radiation induced angiosarcoma of the breast. It seems that we are a very rare group. I was diagnoised in Febuary 2006 after 6 months of different doctors and antibotics. It was finally diagnoised through a biopsey, High Grade stage 111. I finally found a surgeon where I live that is saying I will have to have a simple masdectomy with a skin graft and possible radiation. I do not know if the radiation will be possible as I had radiation before on the same area. I am hearing that chemo does not work well with this type of sarcoma, but I feel that each situation would be different. There are a few people that have angiosarcoma on http://www.sarcomaalliance. God Bless and Good Luck, I would like to hear back from you

    I too have angiosaroma if the breast.
    I also have angiosarcoma of the breast. I just finished 6 rounds of chemo (having been given taxoil) The chemo did not work. Rather the cancer did not shrink at all! Well at least it did not spread to other organs It is so hard to find others with this cancer. I have up coming surgery to remove the breast then will start radiation. Email me
  • worried sister-in-law
    worried sister-in-law Member Posts: 1
    #7
    offutt9 said:

    Hi!!! I have angiosarcoma of the liver, It is very rare. I was dx in March 2003. I have had to RFA's and chemo.... and I am about to start another type of chemo. Please feel free to email me if you want to talk about this. What type of angiosarcoma does he have? In Gods Love Barbara

    what was your doctor's name?

    Hello Barbara,

    That is great that you have survived this terrible cancer.  My sister's50 year old husband was recently diagnosed with angiosarcoma of the liver.  The doctors are telling him he not a candidate for chemo or surgery and probably has weeks to months to live.  We are distraught over this.  We are praying for a miracle.  I was wondering if you minded providing your doctor's name at the Cleveland Clinic.

    Desperate for a miracle!

    Sara

  • determinedtosurvive2014
    determinedtosurvive2014 Member Posts: 2
    #8
    t123 said:

    I too have angiosaroma if the breast.
    I also have angiosarcoma of the breast. I just finished 6 rounds of chemo (having been given taxoil) The chemo did not work. Rather the cancer did not shrink at all! Well at least it did not spread to other organs It is so hard to find others with this cancer. I have up coming surgery to remove the breast then will start radiation. Email me

    Angiosarcoma Diagnosed Please Respond

    HI!!

     

    How are you. I am in such a panic and so hope we can converse!  

    I was diagnosed with radiation induced angiosarcoma of the breast as well. It is very, very scary. Especially when the doctors tell you they don't know what to do either.  My left breast was removed.  I was given a new medication called Votrient which reduced the cancer a great deal, they did take my breast. I also did 6 rounds of chemo. I decided to do the votrient rather than radiation for after treatment because, afterall, that is what gave me the cancer in the first place. Now I have markings on my trunk that look like the "bruise" that appeared on my breast. I am only in a panic of panics!!!  Please let me know how you are and your treatment.  So hopeful. 

  • determinedtosurvive2014
    determinedtosurvive2014 Member Posts: 2
    #9
    bobbieevans said:

    I have radiation induced angiosarcoma of the breast. It seems that we are a very rare group. I was diagnoised in Febuary 2006 after 6 months of different doctors and antibotics. It was finally diagnoised through a biopsey, High Grade stage 111. I finally found a surgeon where I live that is saying I will have to have a simple masdectomy with a skin graft and possible radiation. I do not know if the radiation will be possible as I had radiation before on the same area. I am hearing that chemo does not work well with this type of sarcoma, but I feel that each situation would be different. There are a few people that have angiosarcoma on http://www.sarcomaalliance. God Bless and Good Luck, I would like to hear back from you

    I also have Raditaion induced angiosarcoma

    Good Morning,

    I am in such a panic.  I also have radiation induced angiosarcoma in breast. They want to do radiation as well on me. Have removed my breast, now the "markings" of angiosarcoma are on my trunk of my body. They still insist on radiation. Also, wanting me to take Votrient a new oral chemo.  I hope we can talk, email.  Very rare cancer for us and I really need to talk to survivors. I would love to explain more about my chemo therapy which did reduce the cancer, but they did surgery and I think this spread the cancer. Would love to hear back from you. God Bless!  

  • survivor9yrs
    survivor9yrs Member Posts: 57
    #10
    determinedtosurvive2014 said:

    I also have Raditaion induced angiosarcoma

    Good Morning,

    I am in such a panic.  I also have radiation induced angiosarcoma in breast. They want to do radiation as well on me. Have removed my breast, now the "markings" of angiosarcoma are on my trunk of my body. They still insist on radiation. Also, wanting me to take Votrient a new oral chemo.  I hope we can talk, email.  Very rare cancer for us and I really need to talk to survivors. I would love to explain more about my chemo therapy which did reduce the cancer, but they did surgery and I think this spread the cancer. Would love to hear back from you. God Bless!  

    hi determinedtosur

    i am a 5 yrs survivor of rad induced AS. i had a mastectomy and chemo, gemcitabine and taxotere... it did not spread. as far as i understand, once you have rad, you cannot have it again.    i also met someone on this forum, who became my friend, and she had primary AS. the onc. in fl gave her taxol. when it didn't shrink it, shE had surgery, BUT her dr didn't give her any more chemo and it spread...  so make sure you get chemo to protect the rest of your body. the standard chemo for this cancer seems to be gemcitabine and taxotere. i wish you well

  • Shahid
    Shahid Member Posts: 3
    #11
    angiosarcoma

    Hi there,

    I would like to hear from anyone that has had any form of alternative treatment for this rare cancer.

    I was diagnosed in August 2013, it started in my spine for which I had surgery to debunk the tumour followed by weekly chemo of taxol to stop the growth and spreading. 

    Following this I had radiation to shrink it. However near the end of the course a scan revealed it has spread to the liver.  So we started a 2nd round of chemo with doxirubin to treat the liver however this isn't stopping it from spreading to other parts of the body.  

    I'm desperately seeking alternatives to help me.

    If anyone has any success with either conventional or alternative medicine please get in touch with me.

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