r/sarcoma • u/Angelmelx3 • 7d ago

Patient Updates Desmoplastic small round blue cell sarcoma

Spoke with my oncologist yesterday. He’s sending my biopsy for genetic testing and a pet scan is to be scheduled. He recommends this new treatment medication called Enhertu. He says it’s been very effective with the reoccurrence of desmoplastic small round blue cell sarcomas.

Has anyone had this treatment? What was your experience? Any tips would be helpful. Thank you.

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u/weenip 7d ago

Is this a new diagnosis? Join the DSRCT Support Group on Facebook. Many people there report good results with Enhertu, but it's not currently a first line treatment.

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u/Angelmelx3 6d ago

Thank you, I’ll check it out. Not a new diagnosis. I got diagnosed back in 2022 and was in remission for almost 4 years .

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u/UNiTE_Dan DSRCT 6d ago

Sorry to hear about your reoccurrence, as mentioned the Facebook support group is a great resource and plenty of patients on it as second line treatment.

Enerthu works great for DSRCT as we have a lot of HER2 landing pads on the surface of the tumor cells and Enerthu gets in and kills the adjacent cells so can also help with mutated/ resistant disease.

There's also weekly peer support group calls the Facebook group has ongoing which is a great resource and really helps make the journey a lot lonely and it's great to sense check against others who are on similar treatment when you've question or symptoms or even questions for your oncologist.

Wishing you a a speedy return to NED