antoinettev3
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Posts posted by antoinettev3
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It saddens me deeply to inform the members of this forum that on September 21 at 3:15pm Pacific time Antoinette passed away. She went very peacefully while surrounded by loved ones.
There are none who knew Antoinette who did not love her. And she lived to help people as her posts on this forum bear witness to. We will all miss her.
Eric (Antoinette's husband)
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If you are not looking for anyone one in particular to answer your questions you can just post them here in the general forum or one of the others and you'll be more likely to get a response right away.
It may not be the specific answer you're looking for but at the very least people will acknowledge it.
Try not to be too frustrated, you're probably doing everything right it just takes time for email and PM replies.
Like RandyW if you want to test it out you can either email or PM me and I'll respond to let you know that it's working. I'm online all day.
Antoinette
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For chronic pain or cancer pain this is not high at all. I currently take 10 mg Oxy 3x day and 7.5 -10 mg Percocet every 4 hours and somedays it barely keeps up.
If she is getting relief and the side effects are not causing problems don't get hung up on the numbers. Also bare in mind that one develops a tolerance for all narcotics overtime necessitating raising the dosage even if the disease is not worse.
If she is not seeing any difference or relief then she might want to consider other med combos like the patch for long acting and the fentanyl lollipop for immediate relief.
I pray that she will get relief.
God Bless.
Antoinette
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http://www.popcap.com/gamepopup.php?theGame=ningpo
Pop Cap Games is a safe site and has many enjoyable and addictive games.
Antoinette
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Do you have no insurance at all to cover the drug or is it that your insurance co. won't pay for it? The Tarceva website can help you fill the 'script if you're having trouble with your ins. co.
Some of the other drug co. have programs to help those who cannot afford the medication. I thought Genentech was one of those that did. Have you tried contacting them directly?
I will pray that you find a solution and be able to try Tarceva.
God Bless.
Antoinette
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I had the same exact problem last year when I was on daily Decardron. The heaviness was from muscle weakness and the edema in my upper thighs. I barely had any range of motion. Squatting down to pick something up was IMPOSSIBLE.
Sadly it took me several months to shake all the side effects I developed once I got off the drug but they did eventually all go away.
I'm currently on Decadron again 2mg every other day which is such a double edged sword. I had hoped to get through this course of radiation without it but the inflammation was too painful and this was the only thing that worked. So far the leg heaviness has not returned and I'm only showing mild signs of Cushing's (moon face, bloated belly).
I hope that your Mom is able to wean herself off the Decadron soon. It can make you feel SO good but as time goes on the side effects outweigh the benefits. I was on it for 6 months last year and that was 3 months too long but it was the only way to manage my pain at the time.
God Bless.
Antoinette
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My heart is broken for you. When I saw the post my heart just sank and I could not read past the first sentence from the tears.
There are no words to express how very sorry I am.
May the Lord bless you and keep you. May His grace be upon you. You are loved and cared for by SO many. You are in my prayers.
Antoinette
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1. arm
2. leg
3. lung(s)
4. heart
5. pinkie toes
6. nose
7. knee
8. elbow
9. ear(s)
10.hands
11.lips
12.
13
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Praise the Lord!!!!
This is why I won't do CT only scans anymore. PET/CT gives SO much more info.
This is such wonderful news!
God Bless.
Antoinette
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Hi Lee,
There's an old yiddish saying:
Man plans, God laughs.
Just when you think you've got a handle on things, something will come along and throw a monkey wrench into the works.
I grew up in NY and all my schools had asbestos in the ceiling tiles. In high school I remember having to brush crumbled ceiling tile off of my desk everyday in one of my classes. The school was brand new but the materials were of the poorest quality.
It was quite the scandal back then. I don't know of any other classmates who developed the disease but so often it gets misdiagnosed that it's very possible others have it and we just don't know.
I also participated in some home renovations where I was exposed to drywall dust, joint compound and attic insulation that contained asbestos.
I only recently developed tumors. I have two that are located toward the center of my chest. One is in the fissure of the left lung and the other is in the lining of the upper left lobe. They're both about the same size, 3x2 cm. For most of my battle I had some blunting/thickening at the base of my left lung with a pleural effusion that would come and go. In '04 I developed pleural thickening. Recently this thickening has doubled in size.
My pain is mostly in my shoulder and shoots up into my neck. They suspect this is referred pain from the pleural thickening at the base of my lung. I also have pain at the base of my lung but that's not as bad as it was last year.
I'm going to start radiation sometime next week. I went in for the simulation yesterday. I had radiation last year which gave me tremendous relief from the pain. I'm praying to have the same success this time around.
Are you seeing anyone for pain management? I pray that you will get relief from your surgical pain. I've been in contact with several people who have had their chests cut open like that with several ribs removed and it's a long healing process. But in ALL those cases the pain did eventually subside.
Take care and God Bless.
Antoinette
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Rich,
Sorry that the Tarceva stopped doing it's thing. I'll be praying that the Alimta will be easy on you and that your leg wound will heal up quickly.
You're a great inspiration. I KNOW you'll beat this.
God Bless.
Antoinette
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It took me 6 1/2 hours to get through a fine needle biopsy back in '04! Nothing went wrong it just took that long for them to run EVERY conceivable test before and after to make sure they wouldn't get sued in case something happened once I left.
I was ready to bolt after 2 hours of various blood tests by overly cheerful and incompetent aides and nurses. They did a clotting test to make sure I wouldn't bleed excessively but couldn't get an accurate read since I would clot so quickly before they could do the measurement. Wouldn't you think that would be proof enough that I won't have any bleeding issues?
They still kept trying to repeat the test.If she's going in for an open biopsy then she'll likely be under general anesthesia and that's why they're telling her it will be an all day thing.
Praying her biopsy goes off without a single hitch and that there is good news to report.
God Bless.
Antoinette
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Hi Lee,
I'm sorry that you are dealing with mesothelioma and that you are still in pain from your surgery.
I too have meso and was misdiagnosed with adenocarcinoma 11 years ago. I just wanted to let you know that there are long term survivors of this disease out here. Hopefully Jodi will be along soon and can share her experience with you. She had her lung removed completely so she can relate to the surgical pain you're experiencing better then I can. I believe she was only 26 at the time of her diagnosis.
Please know that you are in my prayers and I hope that your remaining chemo treatments will knock out the cancer completely and that your side effects can be eliminated.
God Bless.
Antoinette
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First I want to thank everyone for their prayers and encouragement. Without it the past week would have been unbearable.
The PET/CT showed significant progression of disease in some areas and slight progression in others. There does seem to be something in the mid lung field which was not there before but there is NOTHING in the right lung and only one lymph node lit up some. Blessedly no spread to any other organs. I fully expected liver mets because of some new discomfort I had been experiencing.
Met with radiation oncologist yesterday. They will fuse the results of this scan with my treatment scan from last year to come up with a new treatment plan. If lung volume is good they will go after all the spots. There is concern about the esophagus being in the field this time and my developing esophagitis. This is my biggest concern.
I have stopped Tarceva and continue with Oxycontin and Percocet for pain. I'm hopeful that the radiation will at least give me good pain control like it did last time. I should hear early next week what the radiation schedule will be and then I'll meet with my oncologist to discuss what we will do after radiation.
I am angry, sad, frustrated and tired with this battle. 11 years on and off with this sword hanging over my head has drained me but it appears that God is not ready for me just yet. I trust in Him completely no matter how hard this battle is.
Thank you all for your support.
God Bless.
Antoinette
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STABLE!!!!
in HOPE
Praise the Lord! Tracy I'm SO happy for you. I pray that your next scan will show a tremendous response.
God Bless.
Antoinette
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Insurance approved the scan so I'll be going in on Monday morning. I could have had it done tomorrow but I wanted to do it on a day when my favorite tech is there.
He knows how claustrophobic I can get and he walks me through the whole thing minute by minute. He doesn't leave me in the scanner any longer then necessary, he comes into the scanning room to ask how I'm doing and remind me that there's only a little bit longer to go. VERY sweet. Helps to take at least some of the stress out of the situation. Even if he were available tomorrow we wouldn't get the results any sooner then Tuesday.
I'm feeling SO weak, tired, dizzy, sleepy. Between the anemia and the Oxy I can barely do anything. I'm hoping that I'll be able to eat better over the next few days and get some vitamin supplements in me to help perk me up.
When I'm feeling like this it's very hard to stay positive or motivated. I'm just so tired.
Thank you all for the prayers.
God Bless.
Antoinette
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Extra prayers being said for this new development.
God Bless
Antoinette
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I was told the same thing after I completed radiation last year. Better to wait and get an accurate read then fret needlessly over a false positive.
Congrats on the NED.
God Bless.
Antoinette
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Thank you all for your comforting, encouraging and kind words. This community is amazing!
I am hoping to get on some long acting oxy and then use the percocet for break through pain. Unfortunately that can't be phoned in so it'll have to wait until the morning to be picked up. In the meantime I try to sleep as much as I can to escape the pain.
I'll post updates as I can.
God Bless.
Antoinette
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The prelimanary report brings some pretty bad news. Not only is there another large tumor in the pleural lining but now I have nodules in BOTH lungs and there are enlarged lymph nodes. We do not have the comparison to the last scan but I can figure out for myself what's new and what has grown.
The pain has become unmanageable as of last night. The percocet only keeps me comfortable for about an hour.
I am just devastated with this news. Not only is the Tarceva not working but the cancer that has been so quiet and slow growing over the past decade has become very aggressive.
I will see my oncologist to discuss what few options I have at this point. Right now I need to get the pain under control so I can function.
I am finding it very hard to stay positive given the advancement of my disease in just 6 weeks time. Mesothelioma does not respond well to chemo and I fear that things will continue to progress.
All prayers are apperciated.
God Bless.
Antoinette
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Does anyone know how Paul Gleason was exposed to asbestos? I searched for articles on his death yesterday but couldn't find anything but the basic facts.
Antoinette
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Jamie,
I started experiencing increased pain about 10 days ago. At first it was shoulder and back pain that I've been having all along then a couple of night's ago I suddenly had pain around my entire lung. Mostly in the areas that were treated with radiation last year.
It was SO weird to have it come on all at once like that. I immediately called for an appt. with the oncologist.
I saw him yesterday and he said that flares of pain during treatment are fairly typical and that he's not real surprised. He said if it doesn't improve over the next week or worsens at all he'll order up a scan to see what's going on. In the mean time I'm taking Percocet to manage the pain. I was just curious to see if other Tarceva patients, especially those who started around the same time I did, happened to notice increased pain.
You mentioned stomach pain, what sort of pain are you having? I'm having a lot of trouble with heartburn and reflux. I thought it was from the Tetracycline I was taking for the rash (which by the way is MUCH better)but I stopped 2 days ago and the reflux is still an issue.
Thank you for the reply.
God Bless.
Antoinette
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Has anyone experienced a flare in pain while on Tarceva?
Antoinette
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There was a pasta primavera that was absolute perfection that we use to get at a restaurant on the upper west side of manhattan called Noodles.
Sadly Noodles is gone and so is my favorite pasta dish.
Second choice would be my own Fettucine Alfredo (an artery clogging concoction that the cardiologist insists should be banned
)Antoinette
They still kept trying to repeat the test.
)
Sad News
in GRIEF
Posted
To all of you that have replied to this topic, I am very touched by the outpouring of love. Thank you all so much!
A memorial service was held for Antoinette on 9/30 and an mp3 recording of it is available at the following address: http://www.aliencows.com/antoinette_memorial.mp3
Once again, thanks for your prayers, warm thoughts and good wishes.
Love,
Eric (Antoinette's husband)