Is anybody dealing with an angiosarcoma?

Posted by amyqueenof4 @amyqueenof4, Sep 4 2:39am

Is anybody dealing with an angiosarcoma? My fiancé is 48 and was diagnosed in January. It has been in two different locations already.

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Hi @amyqueenof4, welcome. As you likely already know, angiosarcoma is quite rare. I’m tagging fellow members @grizz20 @crackerjack @mermaid7272 @brinys, who have experience with angiosarcoma either as a patient or caregiver, like you.

I know that angiosarcoma can start anywhere in the body. Where did it appear for your fiancé? What treatments has he had?

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I am responding to your group info on angiosarcoma.
My family member has angiosarcoma of the scalp-very very rare-& not much info for patient or family…she has had many surgeries on her scalp-tumors re occurred-radiation didn’t do a thing.
(2 times -each like 8 weeks)
Then chemo 2 times for a very long time.
She is a survivor.
She is a strong person with a lot of will.
Diagnosed in Oct 2019.
She is still alive and has not had new tumors in the last year.
She has no scalp left, so that is a good thing.
She has PETscans regularly- no indication of spread to other areas – she feels good considering -living her life -good days and down days.
Amazing gal. I love her! Sending hope to all of you-I never thought she’d be here living her life fully in 2022
Always have hope!!!

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I had angiosarcoma about 10-12 years ago, and was in my upper chest wall . It is, as you probably have learned,
a cancer of the lining of a blood vessel. And extremely rare. Men who have worked in the manufacturing of certain types of plastic are prone to get it. (I am neither!) There are other causes, & I suggest you research it with Google.
Mine started as a very odd-colored bruise that did not hurt, it disappeared, then reappeared in the same place. My dr. said it was nothing, but I insisted she biopsy it. She finally did, and when results came back, said she had never heard of it! I got a new dr.!
I had surgery to remove it, & had no more trouble with that particular cancer. I am one of the fortunate ones. Good luck with your friend, and learn as much about it as you can.

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@colleenyoung

Hi @amyqueenof4, welcome. As you likely already know, angiosarcoma is quite rare. I’m tagging fellow members @grizz20 @crackerjack @mermaid7272 @brinys, who have experience with angiosarcoma either as a patient or caregiver, like you.

I know that angiosarcoma can start anywhere in the body. Where did it appear for your fiancé? What treatments has he had?

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It appeared on top of his bladder and grew up to 7cm- he had taxitol and radiation and for two months he was remission. Then 3 months ago his lung collapsed bc he was bleeding in his plura cavity. He was on a chest tube for over a month with two surgeries to get the bleeding to stop- they even tried blood clotting meds. Now they currently have him on taxotere with gemzare (Not sure of spelling) and the doctors at standford have never seen angiosarcoma do this.

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Does anyone know if Angiosarcome changes someone's personality or is it the chemotherapy? My husband has it on his scalp and neck.

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@milo1

Does anyone know if Angiosarcome changes someone's personality or is it the chemotherapy? My husband has it on his scalp and neck.

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I don’t know that the angiosarcoma does it or if it’s just the “c” word in general. With chemo making people sick and dealing with such a rare aggressive cancer could change anyone.

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Just diagnosed with angiosarcoma cancer
any information I can get. The info on the internet looks pretty serious

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@chuckp

Just diagnosed with angiosarcoma cancer
any information I can get. The info on the internet looks pretty serious

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Welcome, Chuck. While angiosarcoma is rare, we have members here I can connect you with like @amyqueenof4 @grizz20 @mermaid7272 and @milo1. You may have noticed that I moved your post to this existing discussion so you can read the previous posts and get connected by replying to the group.
– Is anybody dealing with an angiosarcoma? https://connect.mayoclinic.org/discussion/angiosarcoma/

Chuck, where was your sarcoma located? What treatment did you have and how are you doing?

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Chuck, Dr. Ravi at MD Anderson specializes in angiosarcoma. You should get a second opinion from him.

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@chuckp

Just diagnosed with angiosarcoma cancer
any information I can get. The info on the internet looks pretty serious

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Angiosarcoma is very rare and very aggressive. My fiancé was diagnosed back in January. Even his doctors at Standford in Palo Alto California are trying unconventional things with him.
Where is your cancer? Have you seen an oncologist yet? My fiancé and I got second and third opinions. You have to be your own advocate!

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Thank you for your responses,

I am Chuck Park. 78 hrs old. Diagnosed with angiosarcoma cancer in scalp 7-27-22. Removed surgically 8-15-22. Pathology report showed cancer removed completely with close margins. As a precaution did re-excision with wider margins 8-29-22. I have been receiving treatment at the VA Loma Linda, California. The Cancer Board at VA recommend I do radiation treatments. I have not seen an oncologist. I am working on getting an appointment through my primary care VA doctor.

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@chuckp

Thank you for your responses,

I am Chuck Park. 78 hrs old. Diagnosed with angiosarcoma cancer in scalp 7-27-22. Removed surgically 8-15-22. Pathology report showed cancer removed completely with close margins. As a precaution did re-excision with wider margins 8-29-22. I have been receiving treatment at the VA Loma Linda, California. The Cancer Board at VA recommend I do radiation treatments. I have not seen an oncologist. I am working on getting an appointment through my primary care VA doctor.

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@chuckp, when will you start radiation?

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