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Date Posted: 12:40:46 09/28/13 Sat
Author: GoodWillTalking
Subject: Raven Update 9/27/13

Hey Guys,

Not the greatest update this time (you know I will always keep it real with you about this). Not as cheerful as my last update, but doing what we can over here. I have been in severe pain for the past few days literally everywhere in my body as if my electrical circuits have shorted and I'm on fire. We are noticing a definite pattern. Every time I take my miracle drug, about a week or so later, the pain is debilitating (like the infused chemo was for me, as it is for most, peaking as the days go on after each treatment). I am not taking Gleevec every day, and what I am now taking has to be the reason for this (or it's a hell of a coincidence).

The pain has been so bad over the past three to four days that I have been unable to sleep. I finally caved in and got out my Dexamethasone, which I used during my infused chemo (had no choice with this level of pain). I know it's not good for Diabetes or Edema, but if you could feel this, you would understand (and I cannot tolerate anymore than maybe 1-2 mg's per day, and want to play it as safe as possible). I feel like pulling out what little hair has grown back, out of my head right now. When Percocet cannot touch pain like this, I had to add the Steroid just to get out of bed. John was so freaked out, that he took the day off today (which I felt terrible about). He has never seen me this bad. I have never seen me this bad (relating to muscle and nerve pain). The Abraxane and Avastin already started this party, but we had to do that to buy me time, and now the Gleevec is making it crazy for me. I could barely walk until I began the steroids. This is crazy (starting to really scare me now).

The last time I saw my Oncologist, I was not in this kind of pain because I had been off the Gleevec for a while. If I stop the Gleevec, it's game over. Praying for serious strength and guidance right now. I literally cried when a statue of the Archangel Michael in bronze arrived today from John to cheer me up (he got it from Amazon). It's so beautiful and the most powerful one that I have ever seen. Now I feel as if I have a piece of Michael with me in my room. It's magnificent and just the thought of him gives me a little peace. Just scared and frustrated. For those of my dear friends out here who have suffered severe nerve pain from chemo, if you have any suggestions of drugs that might help me because you are in the same boat (or were in the same boat), I would greatly appreciate some insight. Neurontin and Lyrica give me Bronchitis and sinus problems (I am one of the lucky ones there as it is a less common side effect of these drugs). I have an enzyme that makes my body hypersensitive to chemo, and the pain is peaking something terrible here at the moment. I am due to see my Oncologist on October 15, and will talk to him about this. John wanted me to go to the emergency room and I had to tell him that no way was I going there no matter how bad this is. What can they really do? I will sit for hours in pain that is already crazy, waiting for someone to see me. Take a new emergency PET Scan? Give me Percocet that I already have and tell me to contact my doctor? If it is the cancer coming back and spreading in these areas again, an emergency room is not going to be much help (they are miserable places to be). If you have any pain medication suggestions for severe muscle and nerve pain that cannot be controlled by Percocet, I really would be so grateful to hear your thoughts. You are my angels out here, and I have gotten some great pearls from you. I love you and hope your week is going better than mine. XOXO.

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Replies:

[> Re: Raven Update 9/27/13 -- Lilly, a nurse who loves you, 20:24:46 09/28/13 Sat [1]

Dear darling Raven,
I am so sorry you are having almost unbearable side effects from the chemo. The newer biologicals cause the body to wage war inside you, I know..

One thing I would like to bring up is a non- oral pain medication. Have you ever tried low dose Fentanyl patches ( probably with a strong anti-emetic to start out with)?

I know you are hypersensitive to most drugs, but getting the Gleevec in you on a regular basis and not stopping it is your goal. Our goal for your recovery. When you go off it, your body feels better but it's not getting better, is it? You must take the yucky stuff for the good health to return.

I do not think you have adequate medication support for the pain and then the nausea caused by the meds to stay on the Gleevec like you want to and like all your support team wants you to do. It is NOT a sin or a shameful thing to have cancer and need strong medications to counterattack the side effects while taking chemo.

Please talk to your Oncologist about the Gleevec and perhaps needing more than a Percocet for the pain. I know you have done some reading in Eastern medicine. Everything must be in balance. Your comfort level must be in balance with the drug fighting and killing the cancer cells.
A day or so in-patient stay might help your Oncologist set up a regimen to carefully balance your meds so you get the maximum benefit from the Gleevec without being in agony.

I care about you and I am praying for your healing.
Hugs,
Lilly


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[> Re: Raven Update 9/27/13 -- Mistyme, 00:52:14 09/29/13 Sun [1]

Raven, My prayers are with you!!! Sending lots of love and hugs your way!


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[> Re: Raven Update 9/27/13 -- Hannah (Healing Light, Hope and Love), 01:41:10 09/29/13 Sun [1]

(((Dearest Ravenbeauty)))

Yesterday's news said shark's blood may help cure breast cancer - have you read about that, too?

Doing a search on food and/or supplements with anti-inflamatory properties will help, too.

My prayers for you and John are endless - see yourself in your mind's eye as already cured, as I do. :)

Love you a lot!


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[> Re: Raven Update 9/27/13 -- Rapido, 03:25:33 09/29/13 Sun [1]

So sorry to hear of your pain. As a medical professional I urge you to go to an emergency room to get your pain under control. At the very least call the oncologist and he should direct you to the hospital. This may involve a couple inpatient days or maybe an overnight stay. I would ask for a pain management consult. Praying for you.


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[> Re: Raven Update 9/27/13 -- Samantha, 08:43:06 09/29/13 Sun [1]

Raven, have you tried Neurotin for the nerve pain? Or Lyrica? They might help if the pain meds aren't. Praying for you!


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[> Re: Raven Update 9/27/13 -- Nancy, 00:43:10 09/30/13 Mon [1]

Please don't wait until October 15 to talk with your oncologist. There are definitely other options for pain control, as others have said. And it might well help to have a short inpatient stay to find the right regimen for you. But that does NOT mean going to the ED. You are correct, that is not a place you want to be. Most oncologists can make you a 'direct admit'. You may pass through the ED to register, but you won't be caught in the rigamarole. Please call your oncologist!!


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[> Re: Raven Update 9/27/13 -- Anna P., 17:33:54 10/02/13 Wed [1]

Dear Raven,

I am sorry you are in pain. I agree with the posts in this thread - call your oncologist and talk to him about what to do. Don't take medicine on your own without him knowing it.

I think of you daily and I send BIG HUGS AND PRAYERS!!

Love you!!

Your Friend,
Anna


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[> [> Re: Raven Update 9/27/13 -- Barbara, 09:18:06 10/03/13 Thu [1]

Raven,
I'm so sorry to hear of your pain. As other posters have said, maybe Fentynl Patches. My Mom fractured her spine when she was 76 yrs old, she did PT at Kesslers, and eventually walked again always in pain, but with a 4 foot cane. Then someone recommended a Pain Management Dr. So glad we went. This is their specialty, perhaps your beloved Oncologist knows one. Please don't suffer until Oct. 15th. And I agree, an ER is no place you want to be. Call your Oncologist, you deserve some help in your fight with this disease...
I wish you peace, love, and to be pain free. You truly are a warrior. God love you...
Wishing and praying for your recovery... Barbara


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[> Re: Raven Update 9/27/13 -- princess Nani Kagamine (sad), 02:12:16 10/10/13 Thu [1]

I am so sorry that you are made to suffer such pain. I know that you are strong. In my eyes there is no one who is stronger. I look at you and marvel at you. you are a the only one that can beat this monster so that it does not return. WE are pulling for you. we love you beyond words and we know that your miracle is near so hold on to us and we will to you and you will be our joy as we hope that soon you are well. Stay strong lovely butterfly though you are fragile you are still strong. love you


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