Synovial sarcoma has spread to the lungs has anyone had a similar situation with pazopanib (Votrient)?
My brother-in-law was diagnosed with synovial sarcoma last year, and our family has been going through an extremely difficult time since then.
Initially, his biopsy didn't show signs of sarcoma. He later had surgery in the inguinal area, but further testing showed that it was actually synovial sarcoma.
He then had a PET scan and started 6 cycles of chemotherapy. During the 5th and 6th cycles, the chemotherapy dose had to be reduced because of a shortage of the medication at the time. Initially, the tumor around the inguinal area responded very well and shrank significantly.
Unfortunately, after the next PET scan, the cancer was still present and appeared more active. They then tried 10 rounds of radiation, but unfortunately it didn't seem to help much.
The doctors have now recommended pazopanib (Votrient), 400 mg per day, mainly to control the disease because it has unfortunately spread to his lungs as well.
Right now, he's struggling quite a lot. He has a persistent cough and significant pain that moves around his body — sometimes his shoulders, sometimes his hips, and sometimes other joints. The pain can be very intense. For the past few days, he's also been having what seems like constipation since starting pazopanib.
We're obviously terrified and don't know what to expect.
For anyone here who has personally dealt with advanced/metastatic synovial sarcoma, especially when it has spread to the lungs:
- Has anyone had a similar situation and responded well to pazopanib?
- How long were you able to stay on pazopanib, and did it actually control the cancer?
- Did anyone experience significant coughing, joint/body pain, or constipation while taking it?
- Are there people who have lived for many years with metastatic synovial sarcoma?
- What other treatments or clinical trials were offered after pazopanib?
- Is there anything you wish you had known earlier in the treatment journey?
I'm not looking for someone to predict his lifespan. I would really just like to hear from people who have actually been through something similar — what worked, what didn't, and how you dealt with it emotionally and practically.
Any experiences or advice would mean a lot to our family.