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Does anyone here currently have angiosarcoma or have had it?

nschnur
Posts: 1
Joined: Dec 2010

I am looking for people who currently currently have or have had angiosarcoma. I was diagnosed with stage 4 angiosarcoma on November 5th and am currently undergoing treatment but had to switch chemotherapy drugs since Taxol was not working since the tumors are all over my body.

Nathan

rastadot
Posts: 4
Joined: Mar 2004

Hello Nathan -

I am so sorry to hear about your diagnosis. It's such a terrifying cancer. I was diagnosed with angiosarcoma March 2004. I'm sure you've read up on all the scarey info the internet has to offer, but I am living proof that you can survive! My cancer was on my chest wall and in my lymph nodes. My treatment started with Taxol and cisplatin. I don't remember what other kinds of chemo drugs. After chemo, I had hyper-fractionated radiation twice a day for 4 weeks. During that time the angio was still growing so i started another round of chemo that was a taxotere and carboplatin which is a platinum base drug while I was doing radiation. (Sorry, I have chemo brain and can't remember the details!) I didn't opt for surgery, though it was strongly suggested. Please know that you can survive it. I don't have a clue why I made it through...I pray you will have the same results and I. God bless you and keep a good attitude.

Janeen

jw8899as
Posts: 1
Joined: Jan 2011

Dear Janeen,

I have read your comment about the drugs that has been working
for you. would you or anyone can help me and tell me what doctors
and/or what drugs to use to cure MY HIGH GRADE NASAL ANGIO SARCOMA ???

My high grade nasal angiosarcoma is spreading agressively. so far I have
seen 3 chemo doctors. each one suggests different drugs. I don't know
which one to choose.

Janeen, would you please tell me your doctor's name and the name of the
hospital that treated your sarcoma ?????

Jonathan

eileent54
Posts: 5
Joined: Dec 2010

Hi Nathan- I'm so sorry about your diagnosis! My daughter is 28 and also has stage 4 angiosarcoma- There is an entire "family of friends" who have this rare and scary disease. Please go to www.angiosarcomaawareness.org We also have a facebook by the same name.I think there is a link to it on the website I gave you. There are so many wonderful people who will all help you with questions on treatment, best sarcoma centers, etc. Taxol didn't work for my daughter either, although some have had luck with it. Do they know your primary site? Are you being treated at a major sarcoma center? Feel free to message me here, Warm regards, Eileen

survivor9yrs
Posts: 53
Joined: Oct 2009

hi,
i am a 14 mo. survivor of breast AS. this was a secondary cancer caused by radiation i had 10 yrs. ago for breast cancer. i had surgery to remove it all and did 6 cycles of chemo. gemzar & taxotere. although the chemo. was extremely hard, i made it through. i did not have mets. i wish you well. you can beat this. just keep faith
survivor 9yrs

Molly72
Posts: 3
Joined: May 2011

I have it on my upper chest, and I also have a GIST in my stomach.
Just diagnosed 6 weeks ago & have not had any treatments, just a myriad of tests.
No idea what stage.
No idea if the two are related.

Am going to a sarcoma clinic, but feel that information is sketchy. My care has been quite satisfactory, but I think that perhaps the docs do not know what to make of this, and since this is such a fast spreading and fatal disease, that they are in no great hurry to treat me. May 9th I go for a surgery on the angio. Is this too long a waiting time?

I have very little info about these types of cancer, and need to learn more about them.
What do I have to look forward to in the future?

Anybody out there??????

bdoshna
Posts: 1
Joined: May 2011

My husband was diagnosed with angiosarcoma on the face. He went in to have a cyst removed. Information that is up to date is extremely hard to find. The oncologist here strongly suggested we go to Kittering or Dana Farber. 95% of doctors have never seen this type of cancer. Dana Farber is fabulous. My husband's cancer has already spread to his lungs and he was put on chemo cycle every 28 days, dioxil. They are truly amazed at how well he is doing and there are very little side effects. I too felt like everyone was moving too slowly and truthfully they were. When we got to Dana Farber we saw 3 doctors in one day had 3 tests and met with the doctors the next day.
When I look at how healthy my husband looks I Sometimes think they made a mistake. Please see a specialist at a sarcoma center.

Molly72
Posts: 3
Joined: May 2011

Hi,
This particular board does not get many people replying to it, does it?
No one replied to my message, so I shall reply to yours.

I hope your husband is doing well.
I had surgery a few weeks ago & the dr. said she got it all. I look & feel healthy & am not taking any chemo. I also think a mistake was made as there are no symptoms, so far.
Soon I will go in for stomach surgery for another Sarcoma called a GIST, another rare cancer that supposedly is not related to the Angiosarcoma. Very confusing!
Let me know what's going on with your husband

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