Meeting with Oncologist...................... -- RAVENBEAUTY'S ALL-STAR RADIO!

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Date Posted: 11:47:07 04/04/12 Wed
Author:

Ravenbeauty
Subject:

Meeting with Oncologist......................
In reply to: Ravenbeauty 's message, "Update......................................." on 13:45:05 04/02/12 Mon

Hey Guys,

Just got back from the Oncologist. Very thorough discussion. He's more concerned about getting the Angiosarcoma off me than the Lymphnodes right now (the two that showed up as hot). He said that it would be too much for me to do all of this on Thursday. Waiting to hear back from the plastic surgeon now about Thursday to see if we are dropping SOME of what we were planning on doing that day and just focusing on getting the Angiosarcoma (my Oncologist felt that even the scalp excision and graft may be to much for me to handle with what they already have planned to get the Angiosarcoma off the incision area again). As it is, I will need at least one graft for the incision area where it's growing like crazy. He said that I picked a sharp plastic surgeon and that he liked him (good sign). They had a conversation today by phone about the surgery on Thursday.

My Oncologist said that they held a meeting over my case with the pathology department as well. They are sending out my samples to a special lab to see if the samples are reactive with the drug Gleevec. If so, he is strongly recommending that we try it. There isn't much that can control Angiosarcoma so this is a longshot. If it's reactive to the Gleevec, it would be considered an off label prescription for the drug and it's insanely expensive (Probably some programs out there to help, but I'm not there yet). Not sure how I even feel about this as it's a form of Chemo usually reserved for Leukemia (ironically enough my mom died of Leukemia/AML). Really need to sort all of this out and think this through as this drug is something you stay on instead of just doing it short term. The side effects are worse than the cancer itself and may not even work anyway so I have a great deal to think through. He strongly cautioned me against using DCA as some have died taking it, but he had no issues with the mushrooms (Maitake or Reishi), juicing, or the ESSIAC which he knows about. He really wants me to stay away from DCA. Blood work was OK except that it looks like I may have Anemia which they said is somewhat common with Angiosarcoma (RDW & MCV off).

One piece of good news in this dark cloud and that is this:

THE FULL BODY BONE SCAN WAS CLEAN (the PET was not, but at least the Bone scan was)!!!

Finally, SOME good news! I am scared about the surgery on Thursday because it's being done with local and may need to be repeated. My Oncologist said that he and the plastic surgeon discussed this possibility as it's hard to get clean margins with Angiosarcoma. Praying that the margins are clear and that it does not spread any further than these two nodes. I'm not good with pain, so I am hoping it's Percocet they are giving me as Morphine, Demerol, and others don't do much for me. I'm ready with my NAC (N-Acetyl Cysteine) to keep the Acetaminophen damage down to a minimum from the Percocet (or Vicodin). Just keeping you in the loop. I feel like I could sleep for a month right now. Just want this over with. Thank you guys so much for the prayers (I am beginning to believe that this may prove more powerful than any medicine they can give me). Thank you so much for your prayers, suggestions, love, and incredible support. I don't know how I am going to feel on Thursday so you may or may not hear from me for a bit. Playing it by ear. XOXO................

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Replies:

[> [> Re: Meeting with Oncologist...................... -- MaryKay, 12:17:12 04/04/12 Wed [1]

Good on the bone scan!
More love to you!