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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 6 days ago | Replies (840)Comment receiving replies
I have radiation induced Angiosarcoma of the breast. Surgery in 2019 and 2021. In March of 2023 it metastasized to the lung. It’s been stressful to say the least. Being a rare cancer, it’s been hard to connect with others with this type of cancer. I am currently taking paxitaxol, used for other cancers, but having sensitivities to it. The first one was severe and was very traumatizing. More Benadryl was given and things settled. Treatments 2,3,4 and 5 were all good but on the 6th one I had another reaction which was scary but less severe. The only difference with number 6 treatment was that the premeds were given in a different order.........hydrocortisone then dexomethazone. The other times the dexomethazone was first. Does anyone know if that can make a difference, Maybe to my body it does. I will see my Dr before next treatment, so that will definitely be part of our conversation. Just wondering about others with a sensitivity to paxlitaxol and their experiences, which I understand is common. Thank you for any input you may have. One day at a time.
Replies to "I have radiation induced Angiosarcoma of the breast. Surgery in 2019 and 2021. In March of..."
I’m sorry you have been going through all of this. Stressful and devastating. Certainly a huge punch in the gut. I urge you to reach out to your local cancer center for emotional support and counseling. Here’s my story:
I had radiation for a low grade hormone positive BC in 1999. In 2017 I found a lump under my arm and it was spindle cell pleomorphic sarcoma. 2 surgeries to remove 2 ribs and get wide margins. Extremely painful recovery with questionable lung nodules. Then one year later they found another breast tumor in the exact spot where the radiation boost was delivered. Triple negative BC this time, bilateral mastectomy and chemotherapy. Possibly radiation induced but nobody has declared that. I had an emotional breakdown after the mastectomy surgery, no block given and woke up feeling like they had taken a burning hot machete and sliced off my breasts. It was a very traumatic experience and I still have flashbacks. You have been through some very traumatic experiences so you may want to consider some counseling to help cope with that. I’m 5 years out and still go for emotional therapy. It has helped me get out of my own anxiety and fear. It’s not easy and PTSD did a real thing. Please reach out to me when you need to talk, cry, swear, whatever it takes
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My Dad is on Trabectadin for lung mets (spread from UPS on skin) they give him 20mins dexamethasone prior to the IV Trabectadin and then 2 days of dexamethasone tablets to follow (4 per day). He’s on pause at the mo die to low neutrophils but I’ll take a look at paxitaxol in case we need a different option so thanks for this - best of luck to you, you sound like you’ve been through tough times already so stay strong xx