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Liver angiosarcoma

Spoon
Posts: 3
Joined: Jun 2010

I have just been diagnosed with angiosarcoma of the liver and begin chemotherapy with Taxol next week. I am very freaked out, depressed and scared. It is such a rare cancer. I am just about to turn 50 and have always been in excellent health until this hit me out of the blue. I have not read any hopeful statistics on this but hope there are success and survivors out there. Mine has not spread elsewhere.

If there is anyone else out there with some hope, please reach out. Thank you

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

there is a woman on this website with the same diagnosis who is doing very well years out! Being in good health other than the cancer is awesome and huge plus to have on your side! My dad was just diagnosed with hpatocellular carcinoma in amrch he had it removed surgically and is doing well! Keep your head up :) look up offut9 she has the same diagnosis

Spoon
Posts: 3
Joined: Jun 2010

Thank you SarahD. How can I look her up?

God Bless!

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

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

lbdb0407
Posts: 1
Joined: Sep 2011

Try accupuncture for the tiredness. It is a side affect of MS which I have and it works wonders. My great niece who is 4 was just diagnosed with angiosarcoma of the liver after her liver transplant. Her name is Izzy and she cannot have Chemo treatments as its affect on her system and her new liver. Very trying

shaner1
Posts: 1
Joined: Jun 2012

I just read your post and it brings me some positive outlook. I was just diagnosed with angiosarcoma of the liver and have not heard good things. I haven't even begun treatment and don't even know what to expect. I'm a 37 year old male, my name is Shane. Thanks for the great story.

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

HELLO!!!   i HOPE YOU ARE DOING WELL.  i am so sorry it took me so long to talk with you. My computer has been down and it took me awhile to get it fixed.

If you are still on the internet, please send me a message so we can talk.   In Gods Love...Barbara

 

 

worried_daughter
Posts: 2
Joined: Jul 2012

Hi Offutt9, Its really great to her your story.My dad 74 yrs old has been diagnosed with angio sarcoma of liver(One large tumour & multiple small tumours).He discovered it by chance.He has no symptoms although the cancer has spread a bit to pancreas and hips.He has a good apetite & leads a good quality of life.Do you have any advice as the doctors have adviced palliative care?

I am sooo scary & worried.

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

HELLO!!  iF YOU ARE STILL ON THE INTERNET PLEASE SEND ME A MESSAGE SO WE CAN TALK...     IN GODS LOVE.,..BARBARA

sandy47
Posts: 1
Joined: Jul 2010

my cousins just found out he had gastric and liver cancer ilast fall he has had surgery developed blood clots and bile overflow into stomach and blood stream he is chemo he has always been healthy and active what i read there isn't a whole lot of hope. he is only 48 yrs old he thought he had a ulcer now we have been told he has legins throughout his liver and his cancer is treatable but not curable. i think he thinks once he gets all his treatment he will be ok i guess because 5 yrs ago i had stage 4 breastcancer and got better. i am trying to be there for him his mom died when i was in treatment and i did mine alone and i won't let him do this by himself i know how lonely this feels. the thought of loosing him is more than i can bare he is like my son. how can i help him. when i found out about my cancer my husband bailed after 30 yrs i will not do this to him his sister already has bailed on him! my doctor has become his dr . this disease hasa struck a man who never smoked, never did drugs, or drank so how is this possiable?

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Just wondering how you are doing? In my last reply, I noticed I said the doctors gave me 3 yrs to live...that was incorrect...it was 3 months. This is 01-03-12, and I just had another cat scan and I am doing great...Hope all is good with you...In Gods Love!!! Barbara

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

My husband, Lee, has cholyangiocarcenoma. When he was first dx as stage 4, (treatable, but not curable), we were devastated and scared to death. I did all the research about the statistics and, I agree they are not good. But, after the initial shock wore out, we got into the routines of doctor appointments and tests, (that seem to take forever to come back), and the chemo, which takes it's own toll on his health. But, after all this he is still here and his tumors have shrunk and the side effects have been dealt with and we live every day now, as if he just has a chronic illness. We do not panic anymore about every little thing. We are vigilent about his heallth and continue to do the best for him. We think of us as living with cancer, as opposed to his being a person dying from cancer. Attitude can go a long way to help lengthen one's life. Knowing this can be one of the most important ways of beating the so called odds. So if I can give you any advice based on my experiences, it would to be to do what needs to be done, don't overthink what could be, and to just live your life every day as if you would if you did not know. I am not burying my head in the sand, cancer has it's way of making you adjust to a new way of living. But, remember, till your last breath, you are living and do it with as much zest as is allowed.

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Spoon, It has been 9 years since i was told I had Rare Angiosarcoma of the liver, and I am doing great! I had RFA (radio frequency ablation ) done and some chemo but I feel BLESSED...
Only given 3 months to live in 2003...qnd I;m still here... Please read my story in the discussion board called Miracle In Work, God has a plan for me.. Or email me anytime..In Gods Love Barbara

MollyHayes
Posts: 1
Joined: Aug 2012

My mom was just diagnosed with angiosarcoma of the liver two weeks ago. In May she went to the emergency room for extreme abdominal pain, while in our local ER they performed a CT and she had lesions on her liver. We were told this was liver cancer. After that moment the situation progressed. A tumor on her liver ruptured and she was bleeding internally. This caused her lungs to collapse and her kidneys to fail, we were told to say our goodbyes. After 2 months of hospitalization my mom finally made it home and was on the road to recovery. During her stay in Pittsburgh at UPMC the head of surgery informed her that it was actually not cancer. That it was benign adonomas caused by hormone replacement. After a month home my mom's liver was not progressing and her symptoms were worsening. She then had a few more hospital stays and finally her liver was strong enough to withstand a biopsy, and now we know what is really going on.

My mom has been to UPMC for a chemo consult, and the doctor was awful. He didn't answer any of our questions and actually said we should go elsewhere. She is going to Hopkins in Baltimore on Monday for another consult and will get her chemo plan. I was just wondering if anyone has any insight. We really have no idea what we are in for. What can we do? What has worked for others? It would be great to hear positive stories (offutt9 my mom read your story and was so inspired! thank you so much!) I am 22, my sister is 20, and my brother is 13, we are not ready to lose our mom.

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Hello!!! My doctor told me that RFA (radio frequency ablation) was the best option for me.. Ask the doctor about it for you Mom..By the way, I got 3 different opinions. I researched the internet and found the doctor i wanted to see and arranged it myself. RFA is a laproscopic surgery and i believe the best thing,,, Praying for you all! In Gods Love...Barbara By the way, my maiden name is Hayes!!!

Prima69
Posts: 2
Joined: Oct 2012

Hi i've just been diagnosed of liver angiosarcoma. I was told i have 6 months time left. My doctor suggested chemotherapy but the treatment is to control from spreading. Could someone please give me some advice. I was told this type of cancer is very aggressive, incurable. So, if it's incurable, why do i need to have chemotherapy if this treatment will only prolong my suffering? The cancer has spread in my liver & other parts of my body.

Could someone please help me? Thank u. Prim

Prima69
Posts: 2
Joined: Oct 2012

Hi barbara, if i may. I've read your story & very encouraging.

Are u able to please give me advice? Thank you.

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

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

worried_daughter
Posts: 2
Joined: Jul 2012

Hi Shane, How are you feeling?
Hope everything is ok.

God Bless

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