Liver angiosarcoma

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  • premo1982
    premo1982 Member Posts: 1
    #22
    Ok my son was diagnosed with

    Ok my son was diagnosed with Angiosarcoma of the liver n is doing well with the iv chemo now they have started this vincristine to go with it he now having jaw pain ear pain n throat pain ...the chemo was working great on him the spots were shrinking but they jus added this medicine it has me worried anyone else took this medicine b4 plz hit me up he is in texas childrens hospital under Dr.Voss he had 70% of his liver removed but a little spread to his longs....the chemo is shrinking the spots but this new medicine jus has me worried he is only 4 yrs old i dont want to see him in pain the whole time he is doing treatment.....jus a worried father 

     

  • hersister
    hersister Member Posts: 2
    #23
    offutt9 said:

    angiosarcoma of the liver survivor for 7 years!!!!!

    Hey!!! This is offutt9 (Barbara Offutt) I have angiosarcoma of then liver and have been to Cleveland Clinic, In Cleveland, Ohio and had RFA (radio frequency ablation) done. The cancer has not spread anywhere else...To this day the cancer has quit growing and shrinking. I feel good...(most of the time except for tiredness) and if we could only invent a cure for that , we'd be rich. LOL They gave me 3 yrs ..7 yrs ago to live... I told them they were wrong..I give God all the PRAISE and GLORY.. Keep the FAITH for without it we don't stand a chance... The doctors said it was rare and I know there are no studies out there on angiosarcoma, but they don't know everything.. I wish you well and please write to me.. In Gods Love Barbara

    My sister

    hello,

    my sister was diagnosed two weeks ago with this as well but it is also present in her colon.  I have researched statistics and they are all doom and gloom.  Thank you for sharing your story.  

  • jbug2
    jbug2 Member Posts: 73
    #24
    offutt9 said:

    ANGIOSARCOMA OF THE LIVER

    HELLO!!       i HAVE ANGIOSARCOMA OF THE LIVER. i WAS DIANOISED IN MARCH OF 2003.WAS AT FIRST GIVEN 6-12 MONTHS, THAN IN AUG. 2003, THEY GAVE ME LESS THAN 3 MONTHS AND SAID I WOULD BEDEAD BY CHRISTMAS, tHE CANCER WAS ONLY IN MY LIVER. i DID LOTS OF RESEARCH AND PRAYING. gOD LED ME TO A DOCTOR IN CLEVELAND , OHIO AR CLEVELAND CLINIC. HE DID 9RFA0 RADIIO FREQUENCY ABLATION ON LESIONS ON MY LIVER. I AM ALIVE AND WELL TODAY.. I GIVE ALL THE GLORY TO GOD. WITH OUT FAITH IN GOD, I WOULD NOT HAVE GOTTEN THRU IT. MESSAGE ME ANYTIME. I WILL GET BACK SOONER.  MY CONP, WAS DOWN...PRAYING FOR YOU...IN GODS LOIVE.....BARBARA

    I am undergoing a CT scan on

    I am undergoing a CT scan on 2/9 for suspected liver mass --- my doctor (for anal cancer) is now thinking I have "something" on my liver.  I complained about the pressure in my up right abdomen area (tightness kind of runs from under the right ribcage downwards), 6 months ago and was sent for a check up with other doctors who did nothing.  I am wondering who might be a good doctor to see at the Cleveland Clinic (Main Campus, Avon, etc) ...  

  • Chuckbuie
    Chuckbuie Member Posts: 2
    #25
    I have not had my biopsy yet.

    I have not had my biopsy yet.  I am scared to death to accept this fate.  I never thought of something like this.  I read alot about angiosarcoma on other sites but all say fatal cancer.  None speak of survival after 3 years.  In my case doctors stated 95% chance angiosarcoma.  Only two types of cancer it could be one in bile ducts, which mine is no where near., or angiosarcoma.  I have 4 spots on liver and one on lung.  I am scared and don't want to go back.  I have never taken good care of my body.  What do I do? 

  • Chuckbuie
    Chuckbuie Member Posts: 2
    #26
    offutt9 said:

    ANGIOSARCOMA OF THE LIVER

    HELLO!!       i HAVE ANGIOSARCOMA OF THE LIVER. i WAS DIANOISED IN MARCH OF 2003.WAS AT FIRST GIVEN 6-12 MONTHS, THAN IN AUG. 2003, THEY GAVE ME LESS THAN 3 MONTHS AND SAID I WOULD BEDEAD BY CHRISTMAS, tHE CANCER WAS ONLY IN MY LIVER. i DID LOTS OF RESEARCH AND PRAYING. gOD LED ME TO A DOCTOR IN CLEVELAND , OHIO AR CLEVELAND CLINIC. HE DID 9RFA0 RADIIO FREQUENCY ABLATION ON LESIONS ON MY LIVER. I AM ALIVE AND WELL TODAY.. I GIVE ALL THE GLORY TO GOD. WITH OUT FAITH IN GOD, I WOULD NOT HAVE GOTTEN THRU IT. MESSAGE ME ANYTIME. I WILL GET BACK SOONER.  MY CONP, WAS DOWN...PRAYING FOR YOU...IN GODS LOIVE.....BARBARA

    Hi Barbara,  my name is

    Hi Barbara,  my name is Chuck.  I go for my biopsy in 2 weeks.  But the doctor already told me this is the only thing it could be.  Everything I have read online about angiosarcoma says no survivors.  I have a wife and 2 young boys.  I need hope.  I read your story and I have a little hope. I'm only 39 and I'm not ready to leave this earth.  But the mass on my liver is growing rapidly. I would love to talk to you if you wouldn't mind.  

  • LuanneMcCarty
    LuanneMcCarty Member Posts: 1
    #27
    Angio Sarcoma

    I was initially misdiagnosed as having a harmless hemangioma. This continued to grow and became so painful I had it removed in Oct. 2012. Luckily my surgeon was a cancer surgeon and treated it as such. He had a biopsy done and found it was cancer. Since it is so rare we had no protocol locally for this, so I have been going to Duke Cancer Center. They have a Sarcoma clinic there. If they had known prior to surgery that it was cancer, they would have started Radiation. Due to the location on my liver, and the damage it will cause, I can only undergo radiation treatment once, so I am just saving that option. I have progressed from scans every 4 months for the first year, to every 6 months for 5 years. I am happy to say that if all is clear in my June scan I will graduate to once a year! We are individuals, not statistics. I treat everyday as a gift and have tremendous faith that I will not leave this earth one day before my time. ( And I will not stay an extra day either ) Sending thoughts and prayers your way.

  • offutt9
    offutt9 Member Posts: 88
    edited May 2017 #28
    angiosarcoma of the liver

    You are so right. We are not leaving this world until God is ready for us. I don't get to get on the Internet much because I don't have it. I have missed being able to talk to others. I am doing wonderful. PRAISE GOD! IT has been 14 years

  • Jenglish
    Jenglish Member Posts: 1
    edited February 2021 #29
    offutt9 said:

    angiosarcoma of the liver

    You are so right. We are not leaving this world until God is ready for us. I don't get to get on the Internet much because I don't have it. I have missed being able to talk to others. I am doing wonderful. PRAISE GOD! IT has been 14 years

    Help

    Hey Offutt9, my dear friend who's 31 years old has been diagnosed with angiosarcoma in liver. She has had a large tumor removed and even more has BIG FAITH! How are you? Is there any way I could setup a conversation between y'all?

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