antoinettev3
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Posts posted by antoinettev3
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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
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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
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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
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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
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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."
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Cindy o'h,
Thanks for the info. I was not aware of the shift to the PharmD program. Makes me feel a bit more confident. I will inquire as to the education of my local pharmacist.
God Bless
Antoinette
Rich,
Thanks for reminding me of that link. I forgot about that source even though I have it bookmarked in my list of favorites.
I checked all the drugs I'm taking (mostly OTC) and according to the site there is no interaction w/ my combo of drugs.
On a side note, how long were you on Tarceva before the side effects started showing up?
I've been holding off taking it for a few days because I have a couple of important meetings and appts. scheduled for this week and didn't want to have any problems or "interruptions" (if you know what I mean
).Thanks in advance.
God Bless.
Antoinette
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Bill,
Thank you for the guidance I really appreciate it. I will contact my hospital's clinical pharmacist and see what they have to say.
Antoinette
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Anyone taking these two drugs together?
My oncologist's office felt there should be no problem taking the two but recommended I speak with my pharmacist. I decided to just call Genentech figuring I'd get it straight from the horse's mouth.
Unfortunately they weren't terribly helpful and suggested that I speak to my pharamacist as well. Their reasoning being that since they did not specifically test for interactions between Neurontin and Tarceva they could not say if there would be a problem or not. They did test other anti-convulsants but not this one.
Now, I may be way off base here but wouldn't you think that if the manufacturer of the medication cannot say, one way or another, if it is safe to take these two pills, that my local pharamacist won't have a clue either? I mean where does the PDR get it's information about the drugs they list?
Also, not all pharmacists are created equal. What if the one at my local drug store graduated at the bottom of his class? Am I to trust the "expertise" of this professional without knowing his background?
Sorry to go off on a rant over a simple question. I had a rough night and I guess I'm still cranky.
I'd appreciate any info.
Thanks,
Antoinette
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Prayers for your daughter and your family. May God bless her with a healthy baby.
Antoinette
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OH! That's just too cool! Where else could you get an opportunity like that? Sometimes the Internet just impresses the hell out of me.
Thanks for posting this.
Antoinette
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Wonderful news!!! Congratulations. May all your scans be NED.
God Bless.
Antoinette
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OH! That was painfully accurate.
I would post that on another forum I frequent but it would become a viscious circle and probably bring about the end of civilization. They have no sense of humor over there.
Antoinette
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A college class was told to write a short story in as few words as possible.
The story had to contain the following three things:
1. Religion
2. Sexuality
3. Mystery
Below is the only A+ short story in the entire class:
"Good God, I'm pregnant; I wonder who did it."
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Traditionally my family cooks up a leg of lamb for dinner with tons of garlic. My Mom also makes this awesome rice dish that has dill and fava beans in it. Mmmm. I'm getting hungry just thinking about it.
Sadly we won't be having that this year since we're all scattered across the country. We'll just do dinner out somewhere.
By the way I think chickin' & dumplins sounds pretty tasty too. Gosh all this talk about food, I need to grab some lunch.
Antoinette
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Nancy,
I'm very sorry that your oncologist is being difficult about this. Usually it's the non-cancer patient that runs into problems with getting adequate pain relief.
The Duragesic patch is very safe when used as directed. The deaths that have occured were caused by people abusing the patch by either cutting it or opening up the patch itself to get a quick release of the drug. The patch is designed for long acting relief but people who are looking for a high will break open the patch, thus making it a VERY high dose short acting drug.
I was not able to stay on the patch last year because the lowest dose 12.5 mcg was not enough and the 25 mcg was too much (made me sick and feel VERY bad) but many people tolerate it very well.
There are drugs specifically for bone pain as well though I have no experience with them.
You might ask your oncologist to refer you to a pain management clinic or doctor who will be more comfortable dispensing adequate medication.
I pray that you will get the relief you need.
God Bless.
Antoinette
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I spoke with a woman who lives in CA who goes there for treatment. She has mesothelioma like I do and has been going to the clinic for a few years. She is on maintenance therapy and is very pleased with the treatment she has rec'd there. She is a 5+ year survivor of the disease. She meets up with 3 other woman who had been receiving treatment for their cancers at the same time as she was.
I've also spoken with the son of a woman (another meso patient) who went there but the treatments didn't help her. He did admit that his Mom's cancer was pretty advanced by the time they sought out this clinic. He did warn me that the Bahamian doctors that are required to be on staff by the Bahamian gov't are, in his words, idiots but that the doctor who runs the facility is wonderful and knows what he's doing.
I spoke with the medical director, Dr. Clement and he is a lovely man who was in absolutely no hurry when he called me and was more then happy to answer all my questions.
I am still considering this facility. The biggest problem I have with it is that you need to stay there for, I believe it's 3-12 weeks for the initial treatment and then fly back for maintenance (2 weeks every 4-6 months). The clinic has discounted rates with local apartments and hotels. Time shares are another way to go.
My surgeon in L.A. had a meso patient who went there who said he felt better after his treatment then he ever had in his life. Sadly his tests showed that his cancer had advanced despite his feeling so well. My surgeon observed that 12 weeks in the Bahamas would probably make ANYONE feel better then they have in a long time.
I think like any other treatment that there are people that see great results and others that are not helped at all. The cost of the treatments are not astronomical compared to what chemo costs but insurance will not cover any of it. The cost of having to live there is what tends to make it rather pricey for most people. We calculated it would run us apx. $20,000 for 12 weeks assuming mid-range accommodations. The treatment for me was going to cost around $9,000.
I highly recommend contacting the facility and speaking with Dr. Clement personally to judge for yourself whether it's suitable for you. I am going to try Tarceva first and see how I respond to that. If it doesn't work out then I will give very serious thought to at least trying this clinic.
Anyone who is interested in getting an excerpt from the Moss Report re: this facility please email or PM me and I'll send it to you.
Sincerely,
Antoinette
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Guess I'm tied with Connie B. at 10.5 years.
It was May 22, 1995 for me. 3 days before my birthday. I'm just so grateful to be able to celebrate my 44th this year.Antoinette
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Maryanne,
Mesothelioma is always malignant & typically difficult to remove as it is not a single tumor but a "rind" of nodular tissue in the lining of the lung. It is not in the lung nor on the lung but between the layers of the lining (pleura).
Most of my cancerous tissue is at the base of my lung but now I have a new spot towards the center of my chest, near my heart.
Surgery was discussed last year. I went to UCLA and MD Anderson for consultations with their meso specialists. One recommened stripping the lining and the other to remove the lung altogether. I was preparing to go the surgical route but my surgeon decided that he didn't want to risk spreading the cancer since it's been stable all these years and hasn't moved from the left pleura.
Unfortunately in most cases of surgery in meso what ends up happening is the cancer spreads to a distant organ or the adjacent lung. While a small percentage of people have had 5+ years of survival by having their lung removed, I've already outlived most patients without having done anything at all.
My surgeon's concern was that he might stir up a hornet's nest by cutting me open. My immune system has done an incredible job keeping things in check for the past decade and I have felt great most of those years.
Since I'm considered such an anomaly as far as meso goes (I also have the most aggresive cell type) most doctors don't know what to do with me. For me quality of life is MOST important. I'd rather live 5 fewer years and have them be great then suffer and have my family see me suffer.
Sorry to have babbled on for so long.
Thank you for your concern.
Sincerely,
Antoinette
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Malou,
Mesothelioma does not respond very well, if at all, to the usual chemo drugs, especially when you have the cell type that I do. Hitting it hard would only make me worse and cause my immune system to weaken. So far, without any real treatment, my system has kept it in check for over a decade. This is unheard of for meso and my oncologist says this is the slowest growing cancer he has EVER seen.
Statisically speaking I should have passed away 8 years ago but didn't. I had a spontaneous remission. When it returned in '04 I REALLY shouldn't have made it even one year but here I am. I guess the good Lord doesn't want me home just yet.
I feel great most of the time and consider myself blessed. So even if the scans show it's a littel worse most days I can't even tell I'm sick.
Praise the Lord!
Thank you for taking the time to post.
Antoinette
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Lucky Again!
in HOPE
Kasey,
I'm SO very happy for you and your test results. May they ALL be good news. I am sorry that your niece is having to deal with this but please know that she's in my prayers.
I saw your reply to my test results post and I would love to hang out at the pub and get to know you better too.
I'll catch up with you tomorrow.
Antoinette
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Hey Don,
Well I know I'm a woman
but can't say I was a never smoker. I quit over a decade ago but smoked for probably twice that long.Does it make a big difference if you're an ex-smoker? Technically I have lung cancer but the tumors are not in my lung but in the lining. My oncologist still thinks it might be a really good choice for me.
How has radiation been treating you? It hit me real hard last summer. Sure hope you're fairin' better then I did.
Thanks for the reply and encouragement.
Antoinette
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Nancy I am so sorry that you and your family are going through this. I cannot imagine how difficult it must be for all of you.
I'm also very sorry that your father's pain is not under control. Have they tried the Duragesic patch for him yet or the Actiq lollipops? Both contain the drug Fentanyl. The patch is a long acting form of the drug and the lollipops are quick acting for breakthrough pain.
My pain was in my chest and radiated to my back as well. I found that the patch worked well but I could not tolerate the side effects but I am overly sensitive to narcotics. If your father is tolerating Kadian well he probably will have no trouble with the Fentanyl.
Please know that you and your father are in my prayers.
God Bless.
Antoinette
) and God willing one of these treatments will work.
(I think this should be the new Tarceva users emoticon)
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.
I'm hoping to be like Rich and the rash will go away after a couple of months.
It was May 22, 1995 for me. 3 days before my birthday. I'm just so grateful to be able to celebrate my 44th this year.
OT but....
in GENERAL
Posted
Mazel Tov!!!
Antoinette