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| Date Entered at Shared Experience: 04/13/2001 |
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SARCOMA SKELETAL |
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My son Seth, was diagnosed in January 2000 (at the age of 16) with high grade, poorly differentiated osteogenic sarcoma (osteosarcoma) of the pelvis (rare location). |
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Ifosfamide (with Mesna rescue), Adriamycin (Docirubicin - with Zinecard to protect the heart), Cisplatin, Methatrexate (with leukovorin flush). |
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24 rounds of chemo - Nupagen (GCSF) to bring white counts back. Many packed red cell and platelet transfusions. 14+ hour surgery - hemipelvectomy with bone alograft reconstruction, non-dislocating, polycarbonate hip replacement, femur cap replacement (titanium). |
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Very High - Just a couple of months off treatment (chemo) and only a few weeks since last surgery (to clean out some fluid and close drainage hole). Seth is back in school and will be graduating on time with his friends in a couple of months. He even will be going to the prom! The adriamycin has affected his heart slightly, but the full effects remain to be seen. As of right now, Seth doing quite well and not exhibiting many symptoms of late term effects. He's being a royal pain in the butt so I guess he's fully recovered! |
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Best place I have found is www.acor.org. A great listserve with many types of cancer covered. Nancy Keane's books - "Childhood Cancer" and "Childhood Cancer Survivors" have been great as well. A really good site for alternative therapies can be found at www.cancerprotocol.com (based on Dr. Judah Folkman's research - try the conventional treatments first though!). |
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Anything that can be done to disseminate information about cancer or to help raise awareness about it is a positive step. There is way too much misinformation out there (and way too many charlatans ready to pounce on those grasping for straws). The best advice I could give anyone in dealing with this monster is to talk to other people who have gone through the same type of cancer (preferably in the same place) that you are fighting and talk to them, talk to the doctors (don't let them treat you as an uninformed party), be your family member's (or your own) biggest advocate and NEVER GIVE UP. You can view Seth's webpage at http://www.geocities.com/sethacles. |
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