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Date Posted: 11:15:31 02/10/13 Sun
Author: GoodWillTalking
Subject: Raven Update - 2/9/13

Hey Guys, I would have gotten out here a little sooner, but this stuff is making me incredibly sick. It's one thing to see it in words, but as I have learned the hard way, it's another to actually live it (night and day from each other). They have me on extremely high doses, in order to be as aggressive as possible, but it's making me very sick. I had spent nearly two weeks in bed from the treatment I had done on January 24, 2013. I did a larger dose of Avastin along with the Abraxane and it pushed the envelope for me. I laid in bed each day cursing the day I decided to do this stuff, and bracing myself to tell my Oncologist that I was done. I'm a strong woman, but I'm only human, and this is killing me. John's been a mess because he doesn't want to lose me, but he has seen with his own eyes what this is dong to me. Usually I get at least a couple of halfway decent days through these treatments, but I have lost even those now (I guess because it's so incredibly accumulative). If it were not for my incredibly wonderful Oncologist, and John, I would have given up on all of this as planned when we went in to see him this past Thursday, February 7, 2013. I nearly cried when he walked in and said "Well, I guess you are probably going to fire me" and that melted my heart and had me in tears later as I thought more about it. I immediately told him that he is the best part of this cancer center (and he truly is). I told him that it's not him, it's the chemo. If anything, I am blessed to have such a caring Oncologist. If anything, I would never want to lose him!

We had a long discussion about everything, and he agrees that this is taking a toll on me that he is not used to seeing TO THIS DEGREE in his practice (and we learned that I do indeed have that enzyme, which he had a hunch about, which basically magnifies everything we are doing). It makes things dicier and far more dangerous, which might help to explain why I feel like I am truly at deaths door. We discussed idea's on how to keep me fighting, but at a rate that I can somehow live with, without losing the strength of what the chemo is doing against this cancer (he said it's always more brutal when dealing with something like Angiosarcoma). The chemo has to be as brutal as the cancer, and Angiosarcoma is a genuine monster. I know in my heart that I have the best Oncologist I could have ever hoped for. He's sharp, and he cares. I ended up doing the Abraxane this past Thursday at a lower dose without the Avastin as scheduled. I went in expecting to cancel all of this, but came out with a new plan. I will be back in two weeks to do the Avastin by itself, and then we are going to do both Avastin and Abraxane together again, but every three weeks now instead of every other week going forward. We are hoping that this extra week will allow me time to bounce back a bit.

He spoke to a Novartis rep that came to see him, and has a call into them again as well. We are praying that they agree to let me do a trial through my center with Gleevec. The rep told my Oncologist that he also got chills from my story of what happened to me so many years ago over a drug that should have meant nothing to to me at that time in my life (It was then called STI571) and here I am thirteen years later with a positive C-Differential Kit for my cancer and their drug! The universe sent me a very powerful message that day. We are hoping to get approval on this, and then I would do the PET Scan first to see what this has done for me internally, and switch to Gleevec (either way, I will have a PET Scan coming up here soon). As we expected, the treatment I did just this past Thursday has knocked me on my ass, but I am pushing through (and I am pushing as hard as I can trust me).

Some good news though. A big thank you going out to Danny for the tip on Hawthorn Berries! My blood pressure had been rising to dangerous levels since I began doing chemo. Last time it was 188/98, and I was experiencing crushing headaches. I've only been taking Hawthorn Berries (comes in capsules by Nature's Way) for a very short time, and my blood pressure shocked everyone when it came back as 130/80 this past Thursday!! It works!! I take (2) 500 mg capsules per day, and my doctor said he was fine with it! My white cell count is actually a little high because I am fighting off an infection, but that means my immune system s still alive and doing it's job! I've lost almost 12 pounds since I began chemo in January, which shocked me a bit. Time to load up on some Haagan Daz Mint Chip (just kidding....I think). The one thing that is odd is that most of the time, my body temperature has been very low (96.8 a total reverse while at the doctors) and 97.1 at home. I have always run a bit low, but I am thinking maybe my Thyroid is out of whack again (they just raised me to 2.00mcg just a few months back on my Levothyroxine as it is)! I have a feeling chemo is not good for the thyroid either. Trying to process the bad with the good. I go from having fevers to very low temperatures and back again....

The blood sugar is still very high. Just began Metformin. We'll see what it can do (only taking 1 500 ER once a day now, due to the severe intestinal issues I am having with this chemo already).

I will keep you posted as often as I can. A big thank you going out to "Good Will Talking" who has been kind enough to repost my Facebook status reports over at my website for me! I just haven't had the energy lately. God bless you and thank you for all the very sweet comments you leave me over there. I do read them when I can, and they are incredibly sweet and uplifting for me. I am very grateful for them. God bless you! I hope everyone has a wonderful weekend! XOXOXO! ♥

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Replies:

[> Re: Raven Update - 2/9/13 -- Hannah ((((healing light)))), 01:06:04 02/11/13 Mon [1]

(((Dearest Ravenbeauty)))

I'm so glad that your doctor is part Guardian Angel!
Under his wings, you WILL win the battle!

Please visualize the "bad guys" being ELIMINATED, too!

Love,
Hannah


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[> Re: Raven Update - 2/9/13 -- llanviewlovely, 02:33:44 02/11/13 Mon [1]

I'm unable to post to your FB page but I just wanted you to know that my mom & I still pray for you daily. You are an AMAZING lady and truly an inspiration!

I recently read somewhere that bananas with black spots on their skin may aid against cancer, hope that can help you in some way.

Keep fighting the good fight & try to NEVER give up and also remember that God is STILL in the miracle working business, TRUST him!

Sending much L-O-V-E & white healing light to you, love you!


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