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    Drug or Chemo Therapy (Chemotherapy): October 2012: Started Doxorubicin, 1 time a week, for 3 weeks, then rest 1 week, then 3 more weeks. On week 2 so far. Side effects MUCH LESS than expected (so far). A little loss of equilibrium, and lots of fatigue, but really less than expected.

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    Procedure or Surgery (Implant chemotherapy port)

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    Decision Point (To Chemo or Not to Chemo, that is the Question...): September 2012: Fast Forward about 7 months. Scans are "mostly stable" however, they show significant thickening of the Pleural lining around my right lung. Adding to that are new symptoms of pain in the same general area when I breathe deeply. Pulminologist and Oncologist both think it points to a progression of the disease and the question is raised to start or not start Chemo...

    The pain has been progressing. And while I still feel strong, my wife and I decided that starting now would be best instead of waiting until the pain and breathing is more difficult.

    Port Implant Scheduled. Chemo beginning 2 weeks after that.

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    Went to get results of my first scan after diagnosis... When they diagnosed me with epithelioid hemangioendothelioma I found an expert at Dana Farber in Boston. I had a consultation, for which that physician wrote a detailed report/letter for my oncologist here at home. After my appointment today, it's obvious my oncologist here never even read the letter. When I asked him if he actually looked at the current films and compared them, he said no, he was just going by the report. Ugh, not a good feeling about this guy... On a good note, they believe my tumors look stable...

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    Decision Point: EHE is a slow moving cancer. Even though I am symptomatic, other than the hemoptysis I'm not presenting as "sickly," and this episode of hemoptysis has subsided for now. The decision of when to start "treatment" (read, chemo) is up to me. Doctor in DFCI didn't seem to push in either direction, and I figured if I was in great immediate danger, he would have pushed for the treatment option right away. Instead, we came up with a plan: CT scans every 3 months; bloodwork to check for anemia every month (to monitor how bad the hemoptysis is), and reevaluate after each. At some point, he expects I will require treatment. Coincidentally, my renal cell carcinoma slides are confirmed that they are NOT epithelioid hemangioendothelioma; and doctor thinks we can really only trace this back as far as the hemorrhagic symptoms beginnings; so I've had it maybe 5 years instead of 10 to 12 years. But this does also mean that I've had 2 distinct cancers. I should play the lotto more often!

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    Other Care (Consultation): Doctors here never heard of EHE. Through research I found a hospital with some experience with this type of sarcoma: The Dana-Farber Cancer Institute in Boston, MA. Called them, made an appointment with a specialist there for mid March 2012. Gathered medical records from past 10 years (at this point, suspected past Renal Cell Carcinoma from 2003 was EHE and misdiagnosed) had all images, studies, and slides sent to DFCI.