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Date Posted: 12:45:26 01/05/13 Sat
Author: GoodWillTalking ((Very hopeful))
Subject: One chemo session done with
I know you guys want me to keep you updated, but yesterday I was just not feeling it (better today). When I went in for my first treatment yesterday, I was shaking like a leaf. There was no calming me down, but eventually I settled in and we got started. They were very kind and gentle with me. Not everyone was friendly, but the people who were kind made up for those who were not. You would think that people, who are working around the dead and the dying so to speak, would be required to get a special type of training before having the ability to work with cancer patients. Compassion is free and can go such a long way for the person who is scared and at the most vulnerable they will ever be in their lives. There are any number of jobs they can look at that do not require compassion or something of this magnitude and sensitivity. Luckily, I have made a few friends there, and that helps the medicine go down. My Oncologist is the ONLY Reason I go to this center in the first place. He is honestly trying to help me. He actually cares about his patients, which is something of a novelty these days.
I felt a little dizzy and woozy, but I didn't get sick to my stomach. It was a very long day because although we actually got there early, they did not even start my chemo until about 4PM. The Abraxane took 30 minutes, and the Avastin took 90 minutes (we didn't leave there until almost 7PM)! One of the girls who was helping me told me that they stay until every last patient is done. They had no trouble accessing the port, and used a freezing type spray, which helped with the Emla cream I had already put on the port before we left. I had a coughing fit on the way home and felt that my heart seemed a little heavy or filled with fluid. I was a little dizzy and felt weak, but nothing over the top yet (knock on wood). Got home and felt oddly weak, but that's probably something I will have to get used to. The one thing that was not fun is trying to sleep last night. My bones were aching in areas that I have never felt pain before. I took a Dexamethasone and a Percocet and finally got back to sleep for a bit. I have a feeling that I am going to have to ask my Oncologist for a higher dose of this steroid. If it's going to be all over pain, maybe it was the smart thing to do in putting that Epidural off for just one area of my body.
At least I got through it! One down! I go next week, but this time Abraxane only (Avastin will be every two weeks).
I did have a huge wild card hit me that I have not told you about yet that have John and I completely freaked out right now. Very few people know this story. Only a few close friends and a few family members, but if you are at all metaphysical, you will understand. A year before my mom died of chemo induced Acute Myelogenous Leukemia, I had a very bizarre incident that has haunted me ever since. Thank God my office was a private one because I could have never anticipated what would happen on that day. I was sitting in my office having lunch sipping on a Starbuck's and reading a magazine. I turned the page and there was this article on a new drug (at that time) called STI571 and how it could save people's lives that have Leukemia (It is now called Gleevec). Normally, I would have turned the page on something like this because at that moment in my life, I had never known anyone who had Leukemia, never thought about Leukemia, was obsessed only with what new cosmetics were making the rounds, and was running out of time on my lunch.
Instead I suddenly began getting incredibly upset. I read every word, and as I read those words, I had tears running down my face and mascara everywhere. I felt sick to my stomach and began crying like I hadn't cried in years. My best friend at the time walked in and said what the hell is going on in here, and all I could say is that I honestly don't know. I knew something was very wrong. I've always been psychic like my mom and my grandmother was, but it's erratic and undisciplined. It doesn't work for the lottery, trust me, I've tried. I just knew that it had to do with me and I was no good for the rest of the day. It haunted me and ate at me. One year later my mother died of Leukemia. My best friend just shook her head and said my God, it's why you were so upset. I thought that too for a while, but for anyone else out there who has some ability, you know that once something has passed that you have foreseen, the residue is gone. It's clean. The residue has never left for me. John used to say that I needed to let it go, but I kept insisting that it's about me. It haunted me long after my mother died. I do think the reason I cried so hard on that strange day, was because on some level, I knew Leukemia would end up breaking my heart, and it did when my mother was put in the ground because of it (a piece of me went into that coffin with her).
Yesterday, before we went into the infusion center, we met with my Oncologist first who gave us some shocking news. He went ahead and called the center that we went to that day, which was nearly 7 hours in the car, as they are actually affiliated with one another, and asked if they still had samples of the the tubes of Angiosarcoma they took from that large lump under my right arm. They are using it to study and did have the vials. Well he ran a C-Kit Differential on it (I must have misunderstood earlier on, because I honestly thought they had already done this on me long ago). He said that a large surprise came back from the reaction they got between my Angiosarcoma and a drug called Gleevec, which is meant to for Leukemia patients. It was not only positive, but highly reactive! In other words, this drug could possibly save my live chemo or no chemo. This drug used to be referred to as STI571! If you are getting chills, you are not alone. John and I looked at each other and could not even believe what we just told. He has been trying to get that day out of my head for years, and now I know that I was right about what I was feeling all along. It was about me. It had everything to do with me. I was reacting to an article about a new experimental drug almost 13 years ago that might save my life one day (or maybe buy me the most time). He brought this up once before, and we were stunned when he mentioned Gleevec, but then I thought he let it go, or it must have been negative (or that he may have forgotten to run it). Well, he ran it recently, and it was positive and strongly positive (in his words-UNUSUALLY POSITIVE)! Words are not adequate. I've come full circle from that strange day and that volatile response to a drug article that should have meant nothing to me. John and I had chills all night long over this........
His plan is to keep me on chemo for two months, run a PET Scan to see if what we are doing has done anything to help me, but he is already trying to get me Gleevec (my insurance company has already turned it down because it would be off label as it is not intended for Angiosarcoma, and the price is something that only the very wealthy could ever afford). My Oncologist is telling me that he is going to fight to get me this drug. I don't know how it will shake down in the end, but the whole thing just freaked us out. I am going to keep praying hard, doing my chemo, and praying that the manufacturer will take into account that the C-Kit showed such a huge and positive response for my rare form of cancer! I would think that it would interest the people in their lab at a bare minimum! We are appealing the swift denial we received.
I'm getting tired here, so I am done with War and Peace on steroids (literally). If your hair has turned gray, my apologies (at least I still have a sense of humor)! I hope each and every one of you has a beautiful weekend! I'm just so glad to get the first one over with (more scared than I had ever been in my life)! I love you! XOXOXOXOXO! ♥
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Re: One chemo session done with -- Barbara, 07:41:59 01/06/13 Sun [1]
Ravenbeauty,
I have been a long time lurker... I don't do Facebook and this is my 2nd time posting... I want you to know, that you are in my prayers every night. Your true beauty comes thru your posts... You are so brave with everything you have faced, God love you.
Please, appeal to the manufacturer of Gleevec, perhaps they will help you with a grant of some sort. I think it is horrible that patients have to hear "Denied" from insurance companies, especially when they are fighting for their very life... I wish you the best, stay strong girlfriend!
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Re: One chemo session done with -- Cate, 06:13:25 01/07/13 Mon [1]
I think it's terrible that these drugs cost so much. A family member has to take this drug and was told the cost was going from 4,000.00 a month to 10,000.00. Thankfully they have a grant from the company and I pray that Raven will be able to get that as well. It has been a miracle medication from my family member.
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Re: One chemo session done with -- Louise (very hopeful), 07:59:59 01/07/13 Mon [1]
You absolutely need to contact everyone you can at Novartis in Hanover, NJ until you get help
Start with Novartis Patient Assistance Foundation, Inc.
800.277.2254
Support for Patients with Insurance
If you have been prescribed a Novartis medicine and need help navigating your insurance coverage, then we offer programs that may help guide you. Our programs provide help with the reimbursement process for certain Novartis oncology products and specialty products. Some programs may help patients who cannot afford their co-pay costs.
These programs include:
• Novartis Patient Assistance Now Oncology (PANO): 1-800-282-7630
+++++++++++
Write a personal and confidential letter to CEO and send registered mail CC 4 other top company officials.
http://www.novartis.com/downloads/about-novartis/people/novartis-org-chart.pdf
Here is Chart of Officers
Novartis Media Relations
Julie Masow,
Novartis Corporation
+1 212 830 2465 (direct)
+1 862 579 8456 (mobile)
julie.masow@novartis.com
Michael Billings
Novartis Pharmaceuticals Corporation
+ 1 862 778 8656 (direct)
+ 1 201 400 1854 (mobile)
michael.billings@novartis.com
My prayers are with you my friend.
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Re: One chemo session done with -- Corrine Germana (happy), 11:00:24 01/06/13 Sun [1]
Have been following your struggle for a very long time. I wish you all the best. This sounds very positive and you are in my prayers. You sound like a wonderful person and deserve the best that life has to offer. Thank you so much GoodWillTalking. You are wonderful too, to share Raven's progress with us (who do not have facebook). The new drug you say is expensive. How can your fans help?
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Re: One chemo session done with -- GoodWillTalking, 11:33:52 01/06/13 Sun [1]
You're welcome!
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Re: One chemo session done with -- Sandie, 03:34:06 01/07/13 Mon [1]
Hmm...$10,000 a month.
More than 5,000 fans.
$2.00 a month per fan!
Sounds doable to me!
Just tell me where to send it!
Better yet, I'll check into it.
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Re: One chemo session done with -- Sandie, 03:42:36 01/07/13 Mon [1]
I just checked to see how to set up a donation site. It's easy--just set up a free blog and add a PayPal donation button. The problem is the money needs to go directly to Raven, and for that we need her information. I don't know how to contact her directly. Any ideas?
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Re: One chemo session done with -- Peaceful (Helpful), 15:34:28 01/06/13 Sun [1]
Just Tweeted Novartis (the drug's manufacturer) with a link to this page and a request for help.
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Re: One chemo session done with -- Starlett, 09:34:15 01/08/13 Tue [1]
First i'd like to thank GoodWillTalking for keeping us up to date.
Raven you are such a strong person and I continue to pray and hope for a positive outcome for you. KEEP FIGHTING!
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