The first ever clinical trial for Angiosarcoma is about to begin!

Because angiosarcoma is so rare, clinical trials designed specifically for this disease are typically not thought to be able to recruit enough patients. Angiosarcoma Awareness has been instrumental in allowing doctors to see that there is a population of angiosarcoma patients large enough to design trials. They have initiated the first NCI clinical trial for angiosarcoma

  1. I was diagnosed with angio sarcoma in Sept. 2013. I had a mastectomy -right breast in Sept. also. In Aug. 2014 I found out that cancer had spread to my liver. I am on Taxol right now. Just had pet scan to see if chemo is working. I am 65 yrs old. I was told that radiation therpy I had in 2007 after diagnosis of dcis and lumpectomy is the probable cause of the angio sarcoma I have now. Any new info would be appreciated.

    • Dear Alberta, I’m so sorry to hear about your diagnosis and spread of disease to your liver. We have a support group on Facebook, you can discuss and get feedback there ( or if you’d prefer, I can help provide you with information. Do you have any specific questions? Are you being treated by an oncologist that has treated other patients with angiosarcoma? Please feel free to contact me directly at [email protected]

      • Hi Corrie,Thank you for replying, I do have an oncologist and she doesn’t
        have much experience with angio sarcoma. I did see a Dr at the Cleveland Clinic and he was the one that consulted with my oncologist and recommended Taxol.. So far the Taxol is working. I guess I’m afraid what will happen after the Taxol quits working. Thank you for caring

  2. I am 68 years old. In 2009 I was diagnosed with prostrate cancer and had it removed. In 2010 I was diagnosed with angiosarcoma. It appeared as a small bump on my forehead that increased in size faster than any other bump that I had. I went to a dermatologist to have a biopsy. It came back as angiosarcoma. I have had radiation and chemo.

    I would like very much to get in any clinical trail.


  3. My cousin just died from angiosarcoma because it took UCLA too long to diagnosis. My family also has the genetic disorder NF1 which presents as “birthmarks” that appear as light brown splotches. This is the most common symptom. I am now reading that there can be a connection. Do any of you have Neurofibromatosis 1? Thanks, Linda

  4. I am 65 yrs. old and just diagnosed with angiosarcoma caused by radiation in left breast. Had lumpectomy 9 1/2 years ago. Had a mastectomy on 6/21/2013. PET scan was negative. Now looking for any information I can find on further treatment options. All I can find is for advanced angiosarcoma that can not be surgically removed. What about treatment to prevent a recurrence???

  5. In may 2012, I get angiosarcoma in my left breast, after breastcancer, (radiotherapie and chemo’s) 8 years ago.
    I’m 42 years old and living in the Netherlands, Europe. I like to get contact and news about the clinical trial. 3 months ago I get surgery, amputation of the breast, with free cutting edges.
    At this moment there is still going exudate and “old blood” coming. I am scared that the angiosarcoma is still activelity. The doctors don’t know much about angiosarcoma.
    MRI, CT, etc didn’t show the tumor. One year before the diagnose angiosarcoma, I had to less thrombocytes. All the time it was to low. Now after de surgery,the level of thrombocytes is oke.
    Is this maybe a marker??
    I like to contact for information exchange with doctors en (wo)men who have/had angiosarcoma. Thank you!! With kind regard, Miranda Nagel, emailadress: [email protected]

  6. I have been diagnotis with angioscarcoma just had bilateral mastecomy june 1 2012. because I found traingle shape extra skin on right breast. had a excision of tissue done 4-25-12.Locale pathologist didn’t know what it was. sent it to Mayo’s that had problem also but finally said it was angiosarcoma.low grade. then june 1 path report said 2nd small tumor. low grade they had to send back to mayo’s because Dr could not agree if it was ok or not at McDonough District Hospital Macomb,Il .
    They said not treatment was need .But how do they know if that is true, I would like to know if i could be in this clinical trial.

    • yes that is fine . Im 63 years old

  7. I was diagnosed with angisarcoma (4th stage) 4 years ago. I am very interested in being in a clinical trial. I was told that I only had five years to live. Somehow I just don’t or won’t believe that! I’m 42 years old and want to look forward to more out of my life than angiosarcoma, scans, and biopsy’s! I just want to feel better so I can do everything I want to do. Cancer is what you make it, Good days, Bad days its all a part of life and we all deal with it differently.

    • Bless you and I pray your treatment has causes a great amount of cancer cell death! I have a 24 y.o. son with stage 4 AS. I am on the AS facebook page for a source of support.

    • Shann, Your ‘4 years ago’ statement is inspiring. My son is really suffering horribly from recently diagnosed metastatic angiosarcoma. It is in liver, pelvis and lung. We would love to see him writing a ‘reply’ to a study in 4 years. I pray he will be healed. It’s good to know they are working on a treatment/cure.

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