Is anybody dealing with an angiosarcoma?

This is my case, as well. I had a painful lump on my breast. It was removed and tested positive for angiosarcoma. I met with my oncologist today who is sending me to radiation but the tumor board had suggested a mastectomy, ad well. I'm unsure about how many cases are similar to ours and what their treatments have been like.

What kind of chemo did you have? I had Paclitaxel and Doxorubicin but never experienced neuropathy. Now on Immunotheraphy

My Angiosarcoma manifested itself in my spleen - at the time of diagnosis I was already Stage4. Paclitaxel didn't help, Doxorubicin almost killed me - I am now on Immunotheraphy once every 4 weeks. Unfortunately it is rare and terminal - I was your age when diagnosed and it's been 1 year - CT shows that the cancer is shrinking but I also have secondary liver cancer - like you, don't know either what to look forward to - still alive at 79!

I have completed 6 cycles of Paclitaxel by end of September, and my latest ct scan was clear. The neuropothy gets worse, fingers and handsd, toes and feet, and creeping up my legs.
I saw a paper on Japanese Goshajinkigan which seemed to show some results, used by naturopaths but not much here. Does anyone have any knowledge of this?
https://bpspubs.onlinelibrary.wiley.com/doi/full/10.1002/prp2.850

@aussiek, paclitaxel is known for causing chemo-induced neuropathy in some people. I'm sorry that you are dealing with this. Here are some discussions in the Cancer: Managing Symptoms support group that you might be interested in:

- Need hope: Neuropathy from chemo
https://connect.mayoclinic.org/discussion/needshope/
- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
- What are some ways to try to minimize neuropathy during chemo?
https://connect.mayoclinic.org/discussion/what-are-some-ways-to-try-to-minimize-neuropathy-during-chemo/
See all https://connect.mayoclinic.org/group/cancer-managing-symptoms/?search=neuropathy#discussion-listview

Aussik, are you still in treatment or have you completed chemo??

Ct scan was clear on all points.
Can anyone tell me of experiences with Peripheral Neuropathy following Paxlitaxil?
I have lost feeling in both hands and feet. Can this recover over time or am I saddled with it ?
Are there any measures to take to lessen the effect?

Not yet. I have a ct scan next week and will follow up after that.

@aussiek, palliative care is "living with ____" and providing options to live comfortably and to the highest quality of life you can. Be sure to share with your palliative care team any symptoms that may arise so they can help. Are you seeing a palliative care team?

The doctors say everyone is different and they can’t say how things will go, but it’s a bit frustrating not knowing, the specialist told me “It will take you, it’s aggressive, we can’t offer surgery or radiation because of the position, all we can offer is palliative chemo” So having had the chemo, now I guess it’s just a waiting game

Hi @kev1992yhns, how are you doing? Do you also have a diagnosis of sarcoma?