INSOMNIACS place to talk in the wee hours
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Here goes Sas. 3 days in hospital with multiple DVTs and PEs assured me of Coumadin for life
4 cycles A/C, the Taxotere. I cycle. Started reacting before I left office. By the time MO saw me I was convinced it was going to kill me. He called it a severe allergic reaction. Think hand foot syndrome from the soles of my feet to the top of my bald head. Every symptom, a thousand times worse. My whole body pealed. Lost every nail. No showers, the water hurt too much. I lost almost 40#. Took about a month to recover.
Was Coumadin the culprit? Or reacting to polysorbate 80, the carrier?
Too bad about the chair, my fibro was flaring and slept through lunch sat.
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Jwoo, I think, I look different also. My ( excuse my language ) scrotum bag neck is more obvious since I lost 20 lbs very quickly. Now, I am too afraid to eat anything fattening or yummy cause its not on the plant based diet, for the rest of your life. Nightmare ! One of the ladies, on the lobular thread posted a photo several months after chemo & then 2 years later. It was striking the intensity of her features after tx. She is a beautiful woman but it was very noticeable.
Chevy, glad you did not need that ball removed. DH has had both done & it is a violent procedure, not that yours wasn't horrific. But they have to dislocate that ball out of the socket...Yikes !
I got grease all over the oven....chit, taken me all day to clean it...
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Spookie--HOLY CHIT, it's amazing you survived. How long ago.? It'd bee interesting if your genetics would have shown that something wasn't good for you. The skin peeling google stevens-johnson syndrome
http://www.mayoclinic.org/diseases-conditions/stev...
Chevy have DGS send link of what they put in........amazing , I forgot something? OH MY....never liked orthopedics anyway---hammers, nails, screw, drills,osteotomes it was like carpentry.
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OMG WTF is everyone talking about I read and yet I did not see, the I read again and realized I'm quite unaware of everything that's on this planet to talk about and even Chevy said words that meant nothing to me--I think I need a break in order to understand anything. BBL
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Luckily I have this to help---Oh now I understand everything and I need some potato chips.0 -
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Cami, did you understand that my neck looks like a scrotum bag?
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OK it took me a few times, but now that I've had some I understand every word and now I want potato chips. Pot the plant that keeps on giving.
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Golf Girl,
If you go someplace cold it should pull up nice and tight :0)
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Cami, Did you see the photo of the girl scout in front of the medical marijuana store? She sold way more than she did at Safeway. She knew who had the munchies.
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So sad that all GScookies have soy. I did find a thin mint recipe though:
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Cami--okay did I read that right , you smoked pot? Cool......Stories... With who? where?
It is just sooooo stupid that it isn't legalized all over. technically and actually, the DEA could bust through my door and tear mu whole house apart. I would be arrested for about a thimble full of pot. Just for having a pipe I can be put in jail. Just writing this I'm a a friggen watch list.
Hey, it might be a mechanism for single old people to have a worry free environment. Three meals a day, free medical care. Cable free, No junk mail. Not have to travel allot, may be to court once and a while. cooperative social environment. Books, The first part cost $3000-40000 in an assisted living. Better facilities >40000. Chit.....No worries, no decisions., no cost LOL..........starting to look good.
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Then i post and I look at the post above and woo-woo has a gun. Who covers that ? What's their acronym. Something ATFA.....or is that like 44444's AFT. Do you think they could do a coordinated bust with us alllllllll over the world? Can you imagine the officers assigned to monitor us. Sitting at some desk , next to each other ----reading about Chevy's Tramp shoes? Ziggypops MOVEMENTS?, MY 2d6 code. Christ they probably had computer guys all over those posts. Did I tell you DBF's name was Aldous?
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Sas, the clots were about 4 years ago. Installed a vena cava filter ASAP at hospital. Heparin(gotta love rat poison) then lovenox, then Coumadin. Doc said I was very lucky.
Taxotere was a year ago. They told me it would be easier than A/C. Somebody didn't get the memo. I did a little digging, what I found pointed to polysorbate 80 in the solution as the cause. No one ever mentioned the Coumadin as a cause.
I was supposed to get 4 cycles of T. MO said no more chemo and stopped it. So the little black cloud we all have hanging around, mine feels a bit bigger. The what ifs a tad more frequent. And WTF happens to me if it comes back?
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This is for Cami, I think, maybe Chevy, someone was organizing?!
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Smaarty, love the cartoon! Hearing we will getting rain this weekend, send it down our way
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Morning Owlettess, Maddy you were up? was everyone sleeping? cool.
There was serious punning in the last number of post
Scrotums wiggling under chins that would tighten up in the cold. Girl Scouts finding better places to sell there cookies. Wonder what Buddy Holly would have written about that? OH George Carlin would have had a time with that one too. Cami, please we have to have a blow by blow erhh puff by puff description. It's okay, if you don't understand when you partake. It makes everything mellow out. You can say whatever you want it's legal where you are. AND you won't care about getting organized. LOL.
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Spookie: you are the absolute classic patient that should have genetic testing for the the CYP450 pathways. The link below is to a topic thread that died a very quick death. I've kept it in my FAVS b/c I figured someday we would start to advance. We should be testing everyone
If you look at the genelex video link last page, I was way off on the numbers related to drug reactions are billions of dollars and hundreds of thousands of problems per year.
I would suggest you call G 1-800TESTDNA get the info take it to your doc PCP and PUSH very hard. to be tested. Obviously, something isn't right.
Try the genelex thing. Remember there is a 90 day free trial. Once you get registered and plug in your drugs. Call them back and ask to talk to a pharmacist. There pharm docs are very knowledgeable about the CYP450 paths and are willing to talk.
I talked to Daugherty yesterday at G, he confirmed that my taxotere dose should have been reduced. I was overdosed in the sense that I should have received less of the drug, even though it was in normal dosing range. Same with the AI's.
Sorry the topics thread name is so huge, but it just copied that way.
Topic: CYP2D6 ability to metabolize tamoxifen and recurrence
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Everyone put the above link in there FAVS If you re-read multiple times that one post where I started with who the players are, it will start to make sense. Plus I'm going to transfer Ziggy's analysis of what I said b/c she is exactly right about what I said. It may seem like I know allot about it. Well I've been reading about it for 20 years. Intensely studied in Jan 2010. I know it seems crazy, but really when you think that your are dealing with only seven players, it makes it less intimidating.
Things won't change until WE change it. Each one of us to the next one, then that next one to the next one.
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Spookie I also transferred your response to that thread. I'm going to go to some of the drug threads and do a blurb and a link to that page.
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Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. ONE(edit correction) is a major player in the drugs I was given. Had I been tested ro some pharmacy detective work done initially before the tests were available(edit correction), it would have been known. The drug choice and /or dosage modifications could have been made
Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.
I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.
Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.
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I've spammed this around the boards, hopefully, the mods will get that now is the time to get our MO's and PCP's to take our care seriously by protecting us from injury by drugs and or drugs that aren't working for us because of our genetics.
So, far no note/pm from the mods sassy
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mORNING TEKA---HOW CAN EVERYONE BE SLEEPING. Did Cami pass that stuff around last night. Where was I? Phooey must missed it.
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I finally fell off the soapbox, play time.
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Chevy's playing over on the OLDER thread. I checked. Chevy Chevy COME OUT and PLAY
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Sass, from what I understand, it was just a rod.... no ball joint on the end.... I didn't hurt the ball and joint.... just a hair-line fracture at the top of the femur... before it involves the joint.
My PC said I could ask for the disk from the surgeon, explaining or showing just what they did... I looked at all of those pictures.... but she had explained, that just a rod, a screw and a bolt??? was used. The rod was about 6 feet long, and about 20 inches round.... probably....Ha!
I slept a lot better with just the 2 Aleve last night! So I just took an Oxycodone.... It must makes me sort of dizzy.... shut up Cammi.... So I'm not taking these anymore! I can take Xstrength Tylenol, or Aleve.... They gave me Oxy in the hospital, but I was just laying around... MAN, I don't know how you can function with these.... maybe it's just me....
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Good Morning--I'm just waking up--and having my first sip of coffee. oooo---I've been sleeping a lot lately so I haven't been on here as much, plus my big job that kept me busy yesterday, LOL
That cartoon is exactly me--words and all, that exactly how I think--I haven't done taxes since 2007 and I'm still getting my papers ready for them--I've tole you all I'm insane in my way and I am. In all fairness to me--I was told my chances didn't look promising so I figured why bother and I'm still here, those damn ?Drs. are always wrong. SEE
Sas u have to start the morning slower with small words and little meaning--nothing is awake yet.
Wren I saw that on TV last nite and LMAO--what a place to sell cookies---Brilliant. And yes I've done pot--Geeze u act like no one has ever done it.hahaha--It's not so easy like u think, if u've never done it. I did it in a bong? and had to be taught--can u imagine being taught--everyone was laughing at me but I trudged on til I finally got it. Everyone said I was so funny but I didn't feel like I was funny so I don't know but u do get the munchies for crap. U could say I got high with a little help from my friends, and I get by with a little help from my friends. Sounds familiar.
I was busy yesterday, my usual Mondays I wonder what people do over the weekend to always have a crises on Monday with electric. I mean important things use batarries now so I just don't get it.
This is how bad I am really--Joey is home today, he doesn't feel well, but I love when he's home except he's afraid to come to close to me so I don't catch anything so I have to tell him with all my meds I'm so immune to all this kid stuff I'll be fine. Go thru this every time, I'm bad.
OK 2nd cup of coffee coming up see how long I stay awake now.
BBL
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Hi GG... just read the last page...Ha! Yes, my Doc also said, the whole procedure would have been much worse, and painful!
I AM lucky in that way! I think that's when they need rehab, and a much longer time to recover???
Spookie, I remember SV talked about an "overdose" to chemo she had one time! Her description was just as violent as yours! Don't know WHAT caused it, but she just swore it was an overdose? She wanted to sue her whole team! It's just awful what happens to some of us, and maybe they never know why! She said all her hair fell out at once! AND all her nails... I sent her a wig, and some crochet caps I made, and her whole tale of what happened was just un-believable!
Cammi, you little turd! I can't call you little shit, because there really IS someone on here that IS one, Ha!
JWoo... Have you gals tried "Mary's Gone Crackers" These little crispy things are my favorite! I like them with Goat-cheese, mixed with a little steak seasoning! They are gluten-free, and I just like them...
Morning miss smarty-pants! Love the cartoon! And is it just ME, or is that dog of Spookie's moving all around? And sometimes he's dressed? Am I hallucinating....??? Again?
Sass, what do you mean about little-shit-ziggy knowing something? You mean she actually does? But what you said is right... I mean if they would have done a gene study, with me, about the probability of me taking Tamoxifen, they would have KNOWN that I had this certain gene, which, when given Tamoxifen, COULD cause a small infarct-(stroke) somewhere, usually in the brain stem, near the 8th cranial nerve.. affecting the HEARING! So that's the reason I went deaf overnight.
That test, IS available, but since there is only a small fraction of women that have this gene, that would take Tamoxifen, they don't consider it that important. The drug only lists that strokes are possible. It's a crap-shoot...
And here you guys thought I was dense.... Ha, ha!
Sass, if you want, I could go waaaaay back, to find SV's posts as to what happened to her and that chemo "overdose"?
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Oh! Morning Cammi honey! I have to be gentle with you? And Joey is home? Perfect! It's okay if you smoke weed.... You should! You just probably shouldn't drink that Jack though...
Have you ever tasted those cookies they make with MJ? Man, with all of that around us here in Colorado, you would think they would be selling it in the grocery stores, like next to the spinach or something! Or in the cookie aisle? I've just never tried it... Man, that ONE Oxycodone I just took makes me feel just weak and like chit! I could sell the rest of them? Ha! DD says give them to HER, that SHE will take care of them in a flash! And make a couple extra bucks! I could sell this whole new prescription..... ! Nah.... I'll just cut it up....
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