antoinettev3

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)

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)

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

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

http://www.popcap.com/gamepopup.php?theGame=ningpo Pop Cap Games is a safe site and has many enjoyable and addictive games. Antoinette

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

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

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

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

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

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

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

Praise the Lord! Tracy I'm SO happy for you. I pray that your next scan will show a tremendous response. God Bless. Antoinette

Extra prayers being said for this new development. God Bless Antoinette

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

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

Has anyone experienced a flare in pain while on Tarceva? Antoinette

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

Mazel Tov!!! Antoinette

Eva Gabor (when she was on Green Acres) my Mom reminded me SO much of her when I was little. I use to call her Zsa Zsa for fun but she was more refined like Eva. Antoinette

Well, just got back from onc's and it was as I suspected. He didn't know how bad the rash is and the message he rec'd yesterday was asking for oral clindamycin NOT tetracycline. He was surprised at how much I've broken out and how it covers so much of my face. He suspects that it has to do with being younger and hormones. His other patients who are taking Tarceva are all over 60 and have much milder rashes. He wrote the 'script for tetracycline and also told me to stay on the 150mg of Tarceva every other day. He felt that I wouldn't be able to tolerate the rash if I were to start taking it everyday. He said once the rash calms down I can try taking 150mg 2 days on 1 day off and see how that works out. He feels that I'll probably be able to get up to 100 mg/day eventually. I mentioned some of the other remedies I've heard about Benadryl 1/2 an hour before Tarceva and baby aspirin everyday and he said I can try those too but not to do all at the same time since we won't know which one works. So once again I LOVE my oncologist (there really wasn't any waivering on my part ) and God willing one of these treatments will work. God Bless. Antoinette

Thanks for the suggestions and input everyone. I will be sure to let my oncologist know about the different antibiotics everyone's using. I have an appt. with him this afternoon to see if I can get an explanation and hopefully a prescription. At least last night's dose of Tarceva didn't seem to make things worse, no new areas cropped up. The clindamycin gel helped a little bit and might be the way I go once I get the rest of the rash that can't be reached by topical gel under control. TracyD: I know exactly what you mean. This is not my definitiion of a rash. A rash to me is some red, itchy, dry spots. This is more like the pox! The dermatologist did tell me to use only Cetephil products on my face which I tried for the first time last night. The Gentle Skin Cleanser felt really nice and didn't make my face all dry. The Moisturizing Cream (not the lotion) also did a nice job. It moisturized without feeling all greasy. I haven't tried their sunblock yet. Since most sunblocks make me breakout anyway, not sure what I'm going to do. The last thing I need is another product that's going to add more breakouts to the mix. I know I'm going to get some grief today from the doctor because he thinks I'm too vain but I'm sorry this is beyond vanity, this is painful. I don't think it's unreasonable to try and control this. I'll let y'all know how it goes and if he has any other suggestions. Antoinette (I think this should be the new Tarceva users emoticon)

Has anyone had their oncologist say they did not want them to use oral antibiotics to treat the rash? My rash is getting worse and with each dose I take (I'm still taking the Tarceva every other day) it spreads to more areas. I don't even want to think what it's going to be like with every day dosing. I went to my dermatologist this morning and she faxed my oncologist to make sure it would be OK to have me take tetracylcine to help the rash. They just called to tell me that they can phone in a topical clindamycin gel but that he doesn't want me to use the oral antibiotics. I told the girl that the topical gel isn't going to do me much good with the rash that's in my ears, on my scalp and inside my nose. My face hurts quite a bit too especially around my nose. I'm hoping that the oncologist didn't have the whole picture and was just imagining a mild, painless, pimply rash around my mouth and nose so oral antibiotics would be overkill. I know of several Tarceva patients who have been prescribed antibiotics and there is nothing on the Tarceva web site that indicates that they can't be taken. Would appreciate any info from fellow Tarceva users. Thanks in advance. Antoinette

How great that you're feeling so good! I can relate. I started Tarceva 10 days ago as well and have been feeling better but the rash is becoming an issue. Not sure when I can expect it to peak. So far it's only been getting worse and with each dose I take I wonder what I'll look like next. What really scares me is that I'm taking 150 mg every other day for the first 2 weeks to see how I react. What's it going to be like when I start taking it everyday? I'm hoping to be like Rich and the rash will go away after a couple of months. Have you started experiencing the diarrhea yet? I've only had some mild cramping. I read a LOT of different treatments for the rash online. One person said that his wife got complete relief by taking Benadryl 1/2 an hour before taking the Tarceva. Others have found antibiotic creams or gels to be helpful especially for the more pimply rash. For the dry skin (crocodile skin) rash most drugstore brand moisturizers seem to work well. I'm using Eucerin for sensitive skin. I plan on speaking to my oncologist about it next week and get a referal to a dermatologist who might be able to manage it better. Good luck and I pray that you continue to do and feel well. God Bless. Antoinette

An old Mississippi farmer had a wife who nagged him unmercifully. From morning till night (and sometimes later), she was always complaining about something. The only time he got any relief was when he was out plowing with his old mule. He tried to plow a lot. One day, when he was out plowing, his wife brought him lunch in the field. He drove the old mule into the shade, sat down on a stump, and began to eat his lunch. Immediately, his wife began haranguing him again. Complain, nag,nag; it just went on and on. All of a sudden, the old mule lashed out with both hind feet; caught her smack in the back of the head. Killed her dead on the spot. At the funeral several days later, the minister noticed something rather odd. When a woman mourner would approach the old farmer, he would listen for a minute, then nod his head in agreement; but when a man mourner approached him, he would listen for a minute, then shake his head in disagreement. This was so consistent, the minister decided to ask the old farmer about it. So after the funeral, the minister spoke to the old farmer, and asked him why he nodded his head and agreed with the women, but always shook his head and disagreed with all the men. The old farmer said, "Well, the women would come up and say something about how nice my wife looked, or how pretty her dress was, so I'd nod my head in agreement." "And what about the men?" the minister asked. "They wanted to know if the mule was for sale."