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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 3 days ago | Replies (803)Comment receiving replies
Hello,
I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly called Hemangiopericytoma). In 2005 a mass was removed from my head in 2005 (then considered then considered “locally destructive.). Lump was initially dismissed by my primary care physician as a cyst (no tests ordered), I was told to call back if I wanted it removed. Six momths later I asked for this, a tumor was found and removed by Peter Black at Brigham and Women’s in Boston. He ordered 30 brain MRIs as a precaution and to prevent recurrence. Well it came back 15 years later and I was diagnosed again with a Stage 4 no cure metastasis, this time tumors in hipbones, left shoulder and 2 in the lung. Currently being treated at Dana Farber here in Boston with pazonapib and have a had few rounds of radiation too. I am doing ok but open to clinical trials for a possible cure some day, presuming that sarcoma specialists at Mayo share this information with Dana Farber practitioners? There is always hope.
Replies to "Hello, I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly..."
@mhils, yes, there is always hope. I invite you to join the discussion here:
- Solitary Fibrous Tumor: Anyone have experience with this?
https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/
- Solitary fibrous brain tumor WHO Grade 3.
https://connect.mayoclinic.org/discussion/solitary-fibrous-brain-tumor-who-grade-3/
If you would like to find out more about clinical trials available through Mayo Clinic, you can search the database or call to talk with a study coordinator. See more here:
- Find clinical trials https://www.mayo.edu/research/clinical-trials
Contact for cancer-related clinical study questions
Phone: 855-776-0015 (toll-free)
How are you doing on pazopanib? Any side effects?
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Hello. I have 6 dedifferentiated chondrosarcoma lesions in my left hip femur and ankle. And another in the right humerus. The primary was in my right femur. I lost my femur, knee and 3 quads in surgery. I had me tumour tested for the IDH1 gen ed mutation by FoundaOne. It was positive. I have been on a therapy named Tibsovo for 105 days now. My PET scan 2 weeks ago showed early signs that tumour growth had slowed significantly and that the tumour in my arm had actually reduced a little in size. It is all uncertain but does show promise. It might be worthwhile being checked for the IDH1 mutation. The therapy has enjoyed a lot of success for AML and bile duct cancer. I am happy to provide more information. My name is Richard..