STFU (Shut the F*** UP)
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Sas, Glad the computer is still working. Sorry about the plate. Hope you weren't in bare feet.
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Hey Juliaanna, sounds Hawaiian with all those vowels in a row. I got half my large buttonhole knitted by casting off, but can't figure out how to cast on the other side - have only cast on with my fingers and one needle when starting a project... so it's off to my knitting teacher's shop I go tomorrow. Here's a pic - tryng to make a little purse to hold all the stuff that rattles around when I use my big girl purse. Wish you lived next door so I could come over with a cup of tea and have you show me - ok - wine if you insist!
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Jan glad your interested. I'd read about Cytochrome P450 since the first publications in the 90's. AS time went on more was discovered and published. The FDA required Big Pharma to publish enzyme pathway info for their drugs for the last ten years. This meant allot of work for them, but it slowly has gotten done. It hit home for me in Jan. 2010. Researching Femara b/c it was following the same pattern as Arimidex. I came across Genelex. It's drug checker at the time was genemdrx. It included the CYP450 enzyme pathways. In running their drug checker I found that their was a drug interaction between my Norvasc/amilodopine(bp med) and femara, arimidex, and aromasin. I then ran it against my chemo agents. Yup same interaction. My chemo was APR 2009, almost killed me. No one understood why. I directly asked my MO to play Sherlock Holmes. I was surprised when he said no. His response was "Sometimes we just don't know these things". What was that? He friggen didn't care? I refused further chemo. Mine was the 4 preventive chemo's. I said I wasn't going to trade off all my organs for the very small % change to my risk profile that it gave me. Chemo was discontinued, one treatment.
After finding the interaction-Jan 2010, I contacted everyone. Both hospitals had multiple drug checker programs which they didn't use. The MO's office depended on the Hospital Pharms to run the checker programs. One hospital had the same checker as mine. I then asked to complete the chemo. I would have a different antihypertensive agent substituted, chosen from the alternative list. MO said their were no clinical trials supporting the treatment. I will never know if they had done their job, if it would have changed my future.
I applied what I learned to my Dh's chemo. His tx's weren't going well. When I presented it to the Mo. His jaw dropped and he said "I don't even know this stuff". DUH. I enlisted the Pharm docs help. He was essentially afraid to make recommendations. Even though I showed him the data that his drugs were "running" into each other in the pathways. Cardiologist response was the same. The biggest offender was Coreg, got that changed to Metoporol during chemo. There were adjustments on everything even his insulin. The admitting orders for Chemo read. "Get list from wife". Then the nurse would call and get an official order from the MO. I called the shots on his non chemo drugs during chemo. Shells & Jules if they are reading this will be aghast. This is way outside of ordinary. DH did better with the adjustments.
Testing is available for 2D6,2C9,2C19. A simple blood test. There are several dozen pathways identified, but don't have testing for there presence. Genelex phone number 1800DNA-TEST.
The checker name has been change to youScript. I subscribe for 23.95. My mental health counselor has used it in his practice since feb/apr 2010. My PCP started to offer it fall of 2012. Both b/c of my teaching. The MO's practice changed, but not sure of details.
Even though a pathway can't be tested for idividually, the knowledge of the drug interactions is known and can be assessed.
In the case of GMA, three Doc's depended upon past use of a drug as they were used to using it. This is a common approach by practioners. It goes back centuries actually. Once a practioner got a feel for how a drug behaved, they were very often hesitant to substitute a new drug. Fast forward to recent history. There has been an explosion of new meds come to market. Drug reps go in and teach docs about drugs, either individually or through journals, conferences. Big Pharma influences drug dispensing by docs. That's a book in itself, but this relationship has evolved to the benefit of both parties b/c there is so much to learn. What it does not mean is that it has benifited us to the degree that it should. The key thought is to look at after market problems with drugs. After market means, once a drug has been approved by the FDA and is sold to the public.
Back to GMA's case. The drug checker showed a severe interaction. If any of the three docs had run either genelex or another as sophisticated checker, the two drugs would not have been prescribed together. A less sophisticated checker is not going to show all the pathway traffic. A superhighway is the analogy I use. Cars speed, cars go the speed limit, cars slow down. How an individual car travels affects/effects the other cars on the road. Sometimes accidents occur. Some are minor with minimal affect on traffic flow, others are all across the spectrum. A major collision can occur. Substitute the word drug for car, it describes perfectly what can happen with drugs as they are metabolized through the liver enzyme pathways of the CYP450 system.
Jan, this is a link to a thread talking about the system
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Jan, send me your drugs by Pm and I'll run them through the cheker.
Veggy, finally got back into my drug checker, still have your list, do you want me to run it or just leave it be.
Thanks Jules, feet okay too.LOL.
Shells,I'll bring a link from the insomnia thread. Found a thing on resetting circadian rhythm LOL. thought a good place to put it was on that thread.
http://community.breastcancer.org/topic_post?forum_id=102&id=767259&page=177
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Good Morning everyone---My first good morning.
Reading thru we sound (Sas) like a drug company, only smarter. U know Sas I didn't know about all the things that u have (for med. interaction) I just know from yrs. ago when some parmacists (I worked there) would get so upset with some Docs and call them and tell them they were not going to fill a script for a certin patient cuz it could have a bad reaction. And themeds would change with the pharmacist telling the patient it was not the Dr. but they thought this was a better drug to use. But everything now is computerized and they should take that extra time with each patient and listen to any change of how they feel--If a Dr. say to me Oh that's normal--I'm fine with whatever SE there are. But if I see a 10 second wait I kow it's not that normal and I've been lucky they look things up right away and might change what I'm tking right then--I have heard things like 1%-3%-5% of this is has these side effects and u'r one of them---but at least they checked right away. Before BC I was on 4 meds a day that was it--no extras so it was simple to add one now I'm on 15 so I always think OK to much something might not go with something and I hve done research on computer myself NOW and talked to pharmacists=maybe cuz I was never one to like to take an aspirin that bothers me and my uncle was a pharmacist --whe they made drugs themselves LOL and some stories he told about Drs. were obnoxious--altho those things should never happen now a days--but whe u tke so many u can't help but wonder what the hell is going thru my body with warnings what they could do and most of them are aot of the same thing. Oh I'm talking to much about something I know little about actuall So I'll STFU-LOL
OK it's going to be 85? today it was like 50 yesterday---here we go. and my Kitty is all meowy this morning she's talking about something very important to her, then I realized she needed food, that was the end of our convrsation for now.
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News this morning___Angelina Jolie has had an elective BMX b/c she carries the Brac1 gene, plans hyster bso too.
Ice flow in Minnesota, the only thing that is cool about this, is it is a small example of how the glacier sheets created the topography of the continents. Hope the teachers pick up on this.
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Sas u'r so funny---Angelina Jolie doesn't need a uteris as long as she has a private jet.
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Cami you're right on mark. You had docs listening and knew when to be concerned. The only advatage that GMA's story gives us all, is that each has a bit more knowledge to protect themselves. Never know who might take the info to their doc's and ask for avaibable testing. AND can ask for a Genelex type drug interaction check, I changed the drug practice in two docs and one MH LPSW offices. Just think if many on BCO took the info to their docs and said is this being done for me and if not, why not. The domino effect would be geometric 1,2,4,16,32,64,etc. As tossing a pebble into water and seeing the ripple it creates.
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Cami LOL
Just think, it's very cool that Angelina's privacy was protected as it should be. All the people involved in her care and no one breached HIPPA.
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Granny, sorry about your friend, saw it on Bonfires. L&H&P's
Finally ran drug checker on your drugs , but couldn't remember all. Lipitor is increasing the prednisone affect by 75%. Prednisone, benadryl, zyrtec have no interactions. What this means is you'll likely have to wean slower at the end till it all starts to equal out. Check with your doc and PM me other drugs.
Edit: I apologize for not getting drug checker login problem fixed before now.
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So, Cami after looking at the interaction report are you convinced that it has value? I think the price went up a few bucks, but it's still under 30$. Ranks with the best value for the money I ever spent. That and the chimianga(sic) filled with chocolate, laced with cinnamon, side of vanilla ice cream, artfully covered with chocolate sauce for dessert last night. HMMMMM
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Morning gals....Sassy, you were RIGHT!
http://www.huffingtonpost.com/2013/05/14/double-mastectomy-angelina-jolie-_n_3270390.html?flv=1
I just think a lot more of her now..... actually I didn't even KNOW her, but always thought of her as a bratty litttle tartlet wanting more publicity. That IS pretty cool that she didn't make a big splash of all that like Suzanne Sommers did/does, and then SHE turned into an all-knowing Professor-of-something about cancer and treatments and hormones.... and plastic surgery.
Julianna Ransic, and Christina Applegate had about the same surgery, for different reasons, right?... So all the things I have learned from you gals, and reading stories about what happens to other women, just gives me more strength to be able to face ANYthing that might happen to me!
So I sit here, reading what Phyllisnavidad talks about WHILE she is getting chemo, and I think DAMN! YOU women are super-hero's! I was scared shit-less to get a mastectomy, OR chemo.... !
And so I wear hearing-aids..... big deal, right? I'm just so proud of all of you.... how things have happened to you, that you could not control, and you are still making the best of every day.....It's like you've been thrown into the fire, and crawl out, brush yourself off, and just go get a Starbucks!
So I won't ever feel sorry for myself... about cancer, that Husband of mine, not even my domineering little shit Daughter! It's like "I cried because I had no shoes, until I met a man who had no feet."
What an inspiration you all are!..... And it's an honor to be part of this little group of women..... "The Hooligan's."
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I just reviewed that post..... So did I use "so" enough? Or should I use it a few more times? I could EDIT it all, but chances are pretty great that I would lose the whole thing..... So therefore.... screw-it.
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You gals chat more than anyone I know, luv it. I will be able to hang out with you the next couple weeks as I recover from my rocks to squishy swap. Looks like I have some serious catching up to do.
After record cold temps the other day we are going for record highs in the 90's today, guess the air condit8oner is going to have to come on when I get home.
Love the pic Chevy
Did you hear Angelina Jolie came out to say she had a prophylactic BMX the last few months? Apparently her docs told her she had an 87 % chance of getting it since she is Braca positive. Too bad most real people dont have that luxury.0 -
Chevette, you are a wordsmith:) Your link on Jolle, linked to her self written post in the NYtimes. MSN didn't link to it, only pulled certain quotes. Jolles words are wonderful. I think BC just found one of the strongest advocates yet.
http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=2
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Chevy, Jolie believe it or not has used her "power" to advocate through the United Nations for years. She ranks right up there with Audrey Hepburn who was one of the early stars to dedicate their efforts through the UN.
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A "wordsmith"..... I like that! That's probably in the same category as black-smith, and smith brothers cough drops? Or Smith&Wesson?
I know Sass! She had it done, with little fanfare, and I'm very proud of her! Even if she DID show that 6 foot long leg of hers out from under her dress! ..... Guess maybe if I looked like SHE did, I'd show it too!
Yes tiggertoo! Come hang with us ANYtime! We will help you recover from your "rock to squishy".... GOOD attitude girl!
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OK I'm back--needed a nap---(Chevy, calm down) LOL
Why is it when we just write randomly as we would speak we tend to apologize for to many words, or TMI or for complaining. Why do we all feel that need? We're all here for each other whether it's just a question or a complete feeling of any type of emotion or problem. we ll get it and we all care or we wouldn't be here--I do it too, sometimes I apologize for my attept at trying to understand or not understand about BC, or going on about something--I have deleting before it even gets on because I think it all sounds stupid, but I do know some days I don't make alot of sense--Except to say it for or to someone for a particular reason, the word sorry should not exist in our jammering or just plain talking avout our day--good or bad--it's what we'd share if we were sitting around a kitchen table with coffee, we can laugh, cry, or just talk about something that is normal for us. I'm on a few threads and enjoy them or I wouldn't be on them--some I don't post much because of my lack of knowledge and I don't feel a true cring, I feel more like a tutoral way of being on a topic and it's really good for some, but on a couple of threads I feel real caring and giving of oneself not a need to know everything just to show people how much u know and how good u are to know all of this. I'm funny that way. Like Sas u mention a concern or problem she'll go out of her way to help u, without the feeling of "Well I know this" she does it to ease our minds and to help us with our Drs.--and u know it comes from love, not Well I know that--I gave Sas a lit of meds I was on and she quickly came back with the idea of what it's all about which is priceless things that I feel we should know--it makes a difference in treatment of more thn BC---Please don't get me wrong there are so many wonderful women on BCO I couldn't even mention them all and all come here with open wounds and so so many will get thru this and can go on with a full wonderful life and mayb our commonality has lost it's place in their life and that's fine, we not a group that anyone want to really belong here but so many stay on for the closeness they feel for people or for continued support for each other or someone new--whatever reason we are here and care --so the women basically here are strong women and maybe even strong with everyone as a group.
Now with that said (see I can be serious, not knowledgeable, but serious) I pooped good today LOL I see a new Dr, for my deteriating (sp) back that causing me more pain than most of my BC related has done. so I'm pissed. She is not a surgeon? I don't even know what u call her a back Dr.??? So I start another life with another Dr. now and I just hope I like her, I asked her if she was really, really nice she said I hope so, I did say hope is not enough so we she laughed but we'll see what she says now and with the power of the computer my body scan and MRI were sent to her and I do have the reports,which I'm so proud of cuz I never saw a report before but Sas told me how to get them (I really didn't know) all these years and I'm like a neophyte--no not a nympho Chevy, Duck and princess K, well I might have een at one time anyway that's my story and read it if u dare.
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Cami - she may be a Physiatrist, or rehabilitation physician. They are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move. Ask her next time.
Chevette - I posted that same picture on Mother's Day!!!
Page 121 - It can be our theme picture.
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Thanks shell I'll get her card because I couldn't spell any of those things. U'r a sweetheart and u truly are-we're all so proud of u.
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Cami L&H's:)
Shellsssssssss, so funny, I saw PHY and started to grab my pen and paper to jot down another name for PHYllis, Then it computed. Rotfalol. I guess that's a nurse joke? others are going, ah hah, she's now lost it.
IAtigger your already in the roll call list, I'll move it forward in a few pages, right now last update is on page 122
We've added treatment:just real basic so, we can tell where someones at, I am trying to add BMX/MX/lumpectomy ,I think that may be useful for future referrence. Referrence unknown as yet LOL. Add furbaby.0 -
Sassy, if it does not require a degree, I can be one! I've been in trouble before....nevermind.
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Phyll??????? Forgot what I said and if it was here????????? Hell Phyll, I've been in trouble my whole life. Changed history one time that was fun, but can't write here b/c it'd cause me to be unanonymus. It was a hell of a battle, but it affects daily lives thousands and thousands of times a day..... cool
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Hello to all: I'm lounging at the Gaylord Texan Hotel. DH has a meeting here this week.It is Huge. Going to try to make it to the indoor pool sometime and get a little work out in. Maybe the cure guy is here!
Sas- my pain Doc uses the DNA testing...once they have the initial blood can they test as drugs are added....for example if u need an antibiotic?
Chevy: honey, your kids need to get a life, they are still squabbling like they are 5 instead of 50. I am so sorry they way your day turned out. In my mind, I treated you like a queen, the way you deserved to be!
Queen Phyllipa: those chemo nurses wish all were as sweet as you, even if you have been in prison!
GMA : you are having a rough ride, it is time for them to get you smoothed out. The doc gave me elavil for migraine.........I had big se like you are.i told her I might as well be dead.
Time to go traipse around this huge place, lots of shops, restaurants,etc. beatmon0 -
Beatmom, Once the test is done it will describe your metabolism status for each one 2D6, 2C9, 2C19. that status will not change. Do not know if something will destroy a pathway. It sounds possible that anything that destroys the liver has the ability to destroy a path. Will have to call company b/c it's a need to know question. AS tests are developed for the other pathways a new blood test would have to be done simply b/c they can't keep samples forever, but will verify. My personal view is, I'll have champagne when 3A4 and secondly, 3A5 are developed,so, much goes through both. The biggest most used path is 2D6. With Genelex once blood work is complete, status is entered into the system. When a new drug is added to the list, the affect by drugs on the paths of known dna are automatically highlighted, the rest are still the generic info that is obtained from research. Competitors likely have same approach.
The link to the 2D6 thread that I put aways back. A fella named Gpalewski has written allot. He linked to his Blog. This MAN is a walking textbook. He's tracking huge amounts of info related to chemo and CYP. All should check to see if he's written about one of your meds. My knowledge is very limited on chemo drugs. His is not.
Your Doc is so on top of this. The effectiveness of your pain meds is so controlled by this. Kudos to him.
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I want a red shirt that says, "Yes, I have cancer. Now STFU."
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Busy morning again for everyone - I've been working and haven't stopped to breathe until now - SAS question? Do you have a link to the pill interaction checker that I can relay to my sleep doc?? I see her again thursday. She gave me a choice. Come in and speak with her or go speak to my PCP. I like her better - I know its probably spendy but at least we work it out.. BTW - She definitely appreciates any input. so i want to be prepared for thursday.
Edit: I see my MO tomorrow about the tamoxifen - If I'm having issues he might take me off :-( I don't really want that to happen.
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Dyvgrl...LOL I want that shirt too!
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ChickaD and Dyvgirl- me 3! I waaaayyy want that shirt! :-)
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We need the shirts for our trip/ cruise!
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