Is anybody dealing with an angiosarcoma?

@amicusdedeus, how are you doing on chemo? How often do you get an infusion?

@jbeck7406, did you get a second opinion?

jbeck7406 - no second opinion yet. I am with Kaiser, and they have review teams that bring several voices into pathology, radiology and even my Oncologist has team reviews of their opinions. I will be getting some second opinions outside Kaiser soon. My plan is to get this first round of chemo done, then travel some including second opinions when I am either done with chemo (they really only have one option right now with taxol - which they say will stop helping any soon...) and traveling while on chemo is rough for sure.
I am getting infusion once a week. 13 infusions so far. Oncologist adjusted dosage to make my side effects a little less (helping quality of life a bit) which helps but after taking a short trip i know to do any more i want to stop the chemo for at least two weeks. I have neuropathy pain in feet and hands which the chemo treatment makes much more intense. My hope is in the Lord..

No unfortunately I haven’t , after surgery everything looks clear, march 28th I have a CT scan on lung so I’m guessing I’ll just wait and see how that turns out then go from there.

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.

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??

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?

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?

See above comments

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

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