Is anybody dealing with an angiosarcoma?

Thank you for replying. Yes was a big shock and the specialist was quite blunt about the prospects. I’ve completed 6 cycles of chemo and decided that’s all I will have because the peripheral neuropathy in my hands and feet have become much worse so really effectively losing the use of the thumb and first 2 fingers on my right hand. Not much to complain about really compared to others

@aussiek, I can imagine it was a shock to find out that the swelling of your cheek was a sarcoma. Will you continue with chemotherapy? How are you doing?

What about radiation therapy ?

I was diagnosed with Angiosarcoma about 5 months ago. It was an atypical presentation on my cheek and was unable to be surgically removed. I was told that it was rare aggressive and terminal. I was offered palliative chemo with Pembro and have had about 4 cycles which has reduced the initial swelling. MRI was clear. Not sure what to look forward to. I am 78

Infusion every 3 weeks - I am off the oral meds - too many side effects.

See above comments

Hi @muenchen1945,
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/

I’m tagging fellow members @grizz20 @crackerjack @mermaid7272 @jbeck7406 @bogeybogey @chuckp @twinsisty1 @posi9 @mulkey518, who have experience with angiosarcoma either as a patient or caregiver. Perhaps someone has experience with immunotherapy like nivolumab (Opdivo) in combination with cabozantinib (Cabometyx).

Muenchen, how long have you been on the new regimen? How often do you get it?

2 month of Paklitaxel didn’t work - went on to Doxorubicin which I could not tolerate after 4 infusions. Now I am on immunotherapy with Novilumab and Cabometyx (oral) which is making me very sick, felt much better with only the infusion.
Anyone on the same meds?

This is Mulkey 518 - so sorry I have been responding elsewhere in this group and did not know that there was a group dedicated to ANGIOSARCOMA. As of 10/17/23 - I was diagnosed with RIA(Radiation Induced ANGIOSARCOMA) as a result from receiving radiation from a previous 2014 breast cancer. My response here today 12/4/23 is a year after your posting from 2022– so is there anything that you can tell me about your treatment of ANGIOSARCOMA??

My mom was diagnosed with Angiosarcoma last year in July, Due to radiation treatments for Breast Cancer after having her breast removed in 2018. It was located in between her ribs. She was with Kaiser also, but I don't understand why they would encourage my mom to do radiation if its known for causing this type of cancer! They stated they don't know much about this form of cancer, because it's rare, so why send people through Chemotherapy and more radiation?! In my mom's case, she was in Chemotherapy for 3 months, and a couple rounds of radiation. Nevertheless, just 3 months later she lost her battle. The cancer had begun to spread the minute she started Chemotherapy! I am praying for every diagnosed with this form of cancer, and I'm currently looking forward to launching a foundation in honor of my mom, and those who have also lost their battle! My hope is to spread awareness, explore and promote other treatment options, and support the families of those who are currently battling Angiosarcoma! May God be with us all.