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What treatments did you have for angiosarcoma?
I was diagnosed in March with a soft tissue Angio Sarcoma. After a PET scan, they found it had already moved to my bones. It is in both femurs and they just found it in my lower vertebrae.
I am currently wrapping my first radiation treatments for the soft tissue and waiting to start radiation on the bones. I have done 1 round of Red Devil chemo waiting to finish radiation to complete 5 more rounds. In the meantime, I am doing Taxal (sorry for the miss spelling). They have talked about immunotherapy after I wrap everything up as a trial.
This has been a roller coaster in a short period of time. So far no surgeries have been mentioned.
Just trying to keep up with all i can and what is the best course of action.
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@lessjudd1976, welcome. Here is what Mayo Clinic says about treatment for angiosarcoma: https://www.mayoclinic.org/diseases-conditions/angiosarcoma/diagnosis-treatment/drc-20350248
It sounds like your team is looking at all the options. I'm tagging fellow members like @mermaid7272 @milo1 @wiola @bigkevh20 and others who have had treatment for angiosarcoma and can share their experiences.
@lessjudd1976, how are you doing with radiation and chemo? And how about the rollercoaster? I can only imagine its been tough.
I finished my first round of radiation on July 8th. I ended up with a pretty significant radiation burn. I am trying to get heal up still.
I am waiting for the next rounds of radiation to be approved.
The chemo does make me tired for a few days afterwards. So far I am doing ok otherwise.
@lessjudd1976 , I’ve been through chemo: Docetaxel & Gemcitabine 9 rounds then a break and put on immunotherapy: Keytruda for 9 cycles and back on the above chemo regimen for 7 cycles and now on my 3rd cycle of Keytruda along with BCG to try to initiate a higher immune response. The chemo sucks the life outta me as time goes on but after a few weeks break I feel mostly normal again. I was diagnosed with stage 4 bladder angiosarcoma on Oct, 4 2024 with multiple bone, lung and other soft tissue mets. I was told initially that radiation wasn’t a treatment option unless there was a spot that was causing extreme pain. I feel fortunate to be here with a decent quality of life but at the same time, I feel like a guinea pig with this rare cancer type and them trying to find new treatments for our disease. Best of luck to you!
@bigkevh20
Today I met with my radiation oncologist...it was the first time they seemed less than optimistic. Went from cure to palliative.
The areas in my spine are the most concerning and from what they are saying harder to cure. The areas in my femurs are still curable as well as the soft tissue area I had.
They are monitoring for additional spread. They mentioned lungs being a high likely potential location.
I will mention Keytruda to see if that is a possibility. I am not sure how much more chemo I have at the moment.
Just trying to stay positive.
@lessjudd1976 upon my first meeting with my local oncologist I was deemed palliative. The chemo regimen I have been on took the metastasis away from my femur, tail bone, rib & hip and lung also the lymph nodes that became involved. Never had radiation but it was a possibility for my femur but the chemo (Gemcitabine & Docetaxel) took care of it. The only thing that hasn’t been able to get rid of was my original bladder tumor. I see a specialist at MD Anderson but I also met with heads of sarcoma department at Johns Hopkins and the chemo meds were same, just different schedules. Always remember it is your body and to seek as many opinions as you want. I think I went to 4 different oncologists before choosing which one I preferred and beginning treatment. The best of luck to you brother.
Also, check into Man up to Cancer support group for men only. Some good guys there and advice or just to express frustrations.