My husband was recently diagnosed with Pleomorphic Rhabdomyosarcoma, a rare aggressive cancer. This blog details our journey with this disease...
Friday, October 26, 2012
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Jon had a bone marrow biopsy yesterday with Dr. P at Baldwin Park. Ouch. His diagnostic testing is complete. Hopefully, the marrow will be clear of cancer cells. This is likely. Many have asked why there is such discussion about multimodal treatment. Here is the Cliff note version:
Pleomorphic rhabdomyosarcoma is a rare tumor comprising 1-5% of adult soft tissue sarcomas; and sarcomas make up 1% of all cancers. This is EXTREMELY EXTREMELY RARE. We asked Dr, P (the Sarcoma chemotherapy specialist in southern California) how many PRMS cases she has treated. The answer was one. Adult-type rhabdomyosarcoma is defined as a soft tissue sarcoma showing pleomorphic or spindle cell pattern, with cells showing rhabdomyosarcomatous differentiation that is hyperchromatic and atypical nuclei, eosinophilic cytoplasm with scattered rhabdomyoblasts and positivity in immunohistochemistry for striated muscle markers: desmin and myogenin. Our tumor fits this definition. Dr. M recommends removing the tumor with wide margins (1-2 cm) and then beginning aggressive chemotherapy/radiation. His argument is to remove the "hot spot" and not allow the cells in the tumor to adapt to chemotherapy. The down side of doing the surgery first is that there is no biological marker to see if the chemotherapy is working. It is documented that Pleomorphic Rhabdos can be resistant to chemo. Also, a larger chunk of Jon's gluteus will have to be removed leaving a permanent hole. The plus side is you have removed a malignant mothership. The doctors at Kaiser wanted to start chemotherapy first for reasons listed above. Given Dr. Mascheranas does not work at Kaiser, his treatment protocol can only arrive as a "suggestion". The doctors at Kaiser must agree on a treatment plan before we can move forward. There is also discussion about the chemotherapy treatment. Jon is requesting that he be treated aggressively (per Dr. M's recommendation), which is not standard. We want to knock this sh** out....
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Sending prayers, love, hugs.
ReplyDeleteLove, Suz and Chadd
The Grases family ( Cristian, my husband was the choral conductor about a year ago) send all their love and pray for the total recovery of Jon. We are praying for the family and specially for him who is such pure and beautiful soul.
ReplyDeleteHope to make it to church this Sunday to give you a hug.
Thousand blessing and thanks Jon and Sarah for sharing this journey with us and if there is anything we can do (cooking, cleaning, babysit etc etc etc)just let us know,
Mirtha
You are so gracious to let us keep current with your journey. We hold you in out light and thoughts every day. Hang in there.
ReplyDeleteTake care. Love from Omaha. You are all in my heart.
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