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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!

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[> [> [> Re: Meeting with Oncologist...................... -- Melina, 08:41:57 04/06/12 Fri [1]

Raven, much love and prayers are being sent your way... So glad to hear about your juicing and drinking the essiac tea. May I also suggest reading the book "Eat Right 4 your blood type"? It has been a miracle for our family. Some foods that you are eating may actually be toxic for your blood type and others can be like medicine for your body and can help in great ways. Take care of yourself, we all love you dearly.

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[> [> Re: Meeting with Oncologist...................... -- soaplover, 12:17:16 04/04/12 Wed [1]

Thanks so much for letting us know so quickly. I am EC STIC that you got soom good news. Hopefully this is the first of much more (good news). You are in my prayers daily and trying to send lots of positive energy. You really are a very brave warrior Goddess!!!

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[> [> Re: Meeting with Oncologist...................... -- Nancy P, 12:23:57 04/04/12 Wed [1]

Raven,

I'm glad that that you had good news about the bone scan being clean.

I'm saying prayers for you that the surgery goes well on Thursday, and the you heal quickly.

Nancy P

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[> [> Re: Meeting with Oncologist...................... -- Anonymous, 12:44:39 04/04/12 Wed [1]

I am so happy that you have received some good news. He sounds like a smart doctor. Tell the doctor that you can't tolerate pain. I am sure that they can come up with some alternative for the pain. At this stage of the game I would do whatever it takes. Keep believing and stay positive. XOXO

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[> [> Re: Meeting with Oncologist...................... -- tamalemama_, 13:57:56 04/04/12 Wed [1]

Raven, Thanks for the update. Still praying for you and have so much hope and faith that you will pull through this. We'll all be thinking about you on Thursday and sending you lots of love.

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[> [> Re: Meeting with Oncologist...................... -- Daryl (hopeful), 22:26:02 04/04/12 Wed [1]

My friend, that is good news .. tempered of course with the need for the surgery and drugs ... if I was where you are I believe I would grasp at any straw the doctors offered ... I hope that the Gleevac works for you .. never was much of a prayer but as I said before stay strong, stay angry this hideous cancer is in you and hold onto the positive energy you are getting from those of us who care about you!

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[> [> Re: Meeting with Oncologist...................... -- Emjay, 23:11:38 04/04/12 Wed [1]

Very glad about the bone scan news. I will be thinking of you, sending up prayers and lots of hugs for you tomorrow and every day. You are a true inspiration.

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[> [> Re: Meeting with Oncologist...................... -- mamajj, 01:52:41 04/05/12 Thu [1]

OH That is such great news about your bone sacn. All the positivity is paying off. Will say extra prayer for you on Thursday. Stay strong.

Much love,
mamajj

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[> [> Re: Meeting with Oncologist...................... -- Meg (Hopeful), 07:04:39 04/05/12 Thu [1]

Thanks so much for always keeping us in the loop. I am feeling very hopeful with the results of the bone scan! It is great news! I am praying for you Thursday and everyday.

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[> [> Re: Meeting with Oncologist...................... -- John B (Hugs, Prayers and Lots of Love), 07:36:22 04/05/12 Thu [1]

Dear Raven:

Thanks for the update. Glad there was good news on the bone scan. Sending out hugs, prayers and lots of love to you. Sounds like you have good doctors in place and you have an army of loyal fans and friends out here praying for you and a miracle. We'll all be thinking about you and praying real hard on Thursday. Hopefully you'll be able to feel the love and comfort we're sending your way. Just close your eyes and think about us and let the love wash over you. It's here and it's real. BIG HUGS!!!!!

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[> [> Re: Meeting with Oncologist...................... -- MBmomof3, 09:51:38 04/05/12 Thu [1]

Stay strong. Sending light & love.

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[> [> Re: Meeting with Oncologist...................... -- Angela, 10:24:35 04/05/12 Thu [1]

Yeah for the clean bone scan!!!! So happy to hear that!

Will be saying a special prayer for you on Thursday:)

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[> [> [> RX assistance....Programs by Medicine makers -- Marie, 13:58:42 04/05/12 Thu [1]

Try contacting Novartis to see if you can get Gleevec, if you decide thats what you want to do.

Postitive energy and prayers sent your way Raven.


http://www.rxassist.org/Search/Prog_Details.cfm?program_Id=202&PD_Id=539&Drug_Id=1099&Company_Id=32&search_type=2&CFID=8590821&CFTOKEN=39241609

Patient Assistance Program That Pharmacuetical Companies have.

Novartis
1800-277-2254

http://www.pharma.us.novartis.com/info/about-us/our-patient-caregiver-resources/paf-enrollment.jsp?usertrack.filter_applied=true&NovaId=4029462041659068671

NOVARTIS PHARMACEUTICALS CORPORATION
Novartis Oncology Patient Assistance Program
Gleevec (imatinib mesylate )

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[> [> Re: Meeting with Oncologist...................... -- Anonymous, 10:47:49 04/05/12 Thu [1]

I've been a "lurker" for some time but have never posted before. Just wanted to let you know that I wish you the best and that my thoughts and prayers are with you.

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[> [> Re: Meeting with Oncologist...................... -- Shanean Austin, 17:57:36 04/05/12 Thu [1]

Raven
So glad you received some good news. This doctor sounds good!!!' I heard about the tea Essaic and it's supposed to be good. Also green tea is good along with the black tea. Juicing is a good thing. You have to keep your strength up and your immune system strong. What did the doctor say about the anemia?? What you should take for it? Nac is good. All anti oxidants right now r good. Please try the vitamin d and Calicum. I. Have to make batches of it right now for my husband. And I have been praying for you!!!

Shanean Austin

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[> [> Re: Meeting with Oncologist...................... -- Ballerina (Dancingw/defiance&joy), 00:33:55 04/06/12 Fri [1]

Congrats on the bone scan results. It's one step but even that is progress. I'm familiar with Gleevec and have heard more possitive than negative. Keep your options open. I'm adding your surgeons along with you (as per usual) at the top of my prayer list. Prayers do work, you're proof already! Continued love and hugs, darlin'.

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[> [> Re: Meeting with Oncologist...................... -- monika, 02:36:17 04/06/12 Fri [1]

Have been thinking of you today, and wishing you good thoughts.

Your update sounds promising -- awesome news about the bone scan, and your surgeon sounds very, very promising. Having a good surgeon can make all the difference! Removing the cancer is key to stopping angiosarcoma.

All the best today Raven; you'll do great. You sound like you have a great team.

(and it's gotta feel good to see how GREAT GH is these days!! There is really hope there it seems!)

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[> [> Re: Meeting with Oncologist...................... -- rapido, 08:06:06 04/06/12 Fri [1]

Most payers do not review chemotherapy drugs for off label indications. Your oncologist can check into precert requirements, I'll bet there are none. I have worked in the industry, most payers do not get involved in chemo issues. There is a lot of off label chemotherapy. Gleevac is an oral agent, used to keep cancers like CML dormant. Good news about your bone scan. Remember Lance Armstrong. Cancer clinics, cancer societies and pharmaceutical assistance programs also provide financial assistance. Talk to a social worker at the hospital, even if you are not currently a patient. Often they will assist. Some hospitals have designated people to find payer sources for meds. I know this for a fact, have worked in the industry. Clinical trials usually provide free meds. We don't know anything about your personal situation, I hope you have a family supporting you. Keep your head up. You are in the thoughts and prayers of many. Thanks for the continued updates.

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[> [> Re: Meeting with Oncologist...................... -- wherly, 07:09:08 04/08/12 Sun [1]

You and your loved ones are in my prayers, my this Easter be a true blessing to you.

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[> [> Re: Meeting with Oncologist...................... -- Anonymous, 07:55:09 04/08/12 Sun [1]

Happy Easter Raven. Wishing you continued improvement and healing. Take care. XOXO

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