INSOMNIACS place to talk in the wee hours
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Woke up from a nice nap a little bit ago. Now that the drains are out, I'm starting to feel somewhat normal again. Not pushing myself to get back to where i used to be, I'm gonna work up to it a bit at a time
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Sassy thank you. Wish they would do more research. For all of us.
I just deleted this post because I forgot that this is an everyone forum and not stage 4. So what I posted was kind of heavy and not really appropriate on this happy and sleepless forum. Besides why scare folks. Things got kind of silent and that made me sad. So I nixed it. Back to Chevy and Cami banter... I need that more then I need opinions. :-)
Hugs. Be well.
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Rosie, your welcome. I'm not going to look at any more meta-analyses. I think these four conclude that more questions are raised than they are solved. I brought the 4 articles here on the off side chance someone may find a pearl that applies to them. Since these were such huge backlooking( meta-analysis) studies, I hoped that the conclusions would be cleaner i.e definite conclusion. In each case the conclusion did not give a definite conclusion
You've raised new questions. I have no clue about chemo drugs other than what I had. But My first reaction was re: your statement about the mayo doc wanting you to take two drugs together-falsodex and Aromasin. That may doc had a reason. Both are poisons Buthe must know/think something about them is good--------otherwise he would say it. Aromasin may have an interaction with falsodex that is good.
Ask your doc to get you genetically tested for the 6 drug metabolism pathways. I'll link to 2D6. It's not just one of my soapbox's. When you read from my Feb 2013 post on you will see why I say knowing your genetics matters
Don't throw in the towel yet--------THROW IT AT THEM
I;LL GET THE LINK.........for you it should be a quick read
https://community.breastcancer.org/forum/73/topic/798301?page=1
Go to my posts starting on page 1 half way done date Feb 23, 2014. Right after the blue box of heidihills delete.
Im' going to put your mentioned drugs into my Genelex drug checker. BBL
WHAT OTHER DRUGS ARE YOU TAKING?
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Rosie might take a bit I had to renew my subscription (only 24$) hint hint. Best money in the world. I know why all my drugs work or don't work. I know why they almost killed me with only one chemo treatment. I know why all the AI's were so awful. I know what drugs are going to interact. All based on computer software, that can then be backed up with explanations from a Pharmacist that is well school in CYP metabolism
I have two links that explain the problem of docs not knowing the same info I do. Am I that smart---nope. But I'm willing to learn. Can't trust our docs to do the same.
Jan 13, 2015 05:14PM , edited Jan 13, 2015 05:19PM by sas-schatzi
Received an email with links to two sites. One is Genelex's blog site(first) It discusses a study regarding Pharmacogenomics The second is the study.http://genelex.com/blog/study-pharmacogenomic-knowledge-gaps-persist-among-physicians/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4100727/
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Rosie Aromasin is metabolized through 3A4 as are all AI's . And it goes through 1A2. Faslodex goes through many paths. 3A4 is one, but it's identified as a minor path.
The problem that is unknown to you I whether your 3A4 is normal. Without knowing your genetics, your docs are giving you drugs based on Paintball Therapy. Paint ball therapy is a phrase I coined 20 plus years ago. I've written a definition of it on the 2D6 thread.
I'm an Intermediate metabolizer at 3A4. That means I metabolize drugs more slowly. When I'm given drugs that use that path dose altering should be considered. Lowered. This is why I failed the AI's I theoretically need a lowered dose. But that can't be said with absolute assurity because it's never been studied.
At 3A4 ther are three recognized ways of metabolizing a drug. Intermediate, normal, rapid. 50% of all drugs go through 3A4 &3A5. An abnormality in either can really cause drugs going through those paths to act outside of expected results.
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Hi Ladies.....I'm checking in again. I'm nervous, my BRAC results are back but I missed the call and the genetic counselor has left for the day. Why couldn't she have just said they are negative? She said it was unlikely that I would be positive when we met and I've been mostly unconcerned about it, but now I'm kind of on pins and needles. Why did I miss that stinking call????
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OH Tang with you, I have done that. Now it's after hours? I calculate 5:12 Pm. They were likely gone by 4-4:30. Kick something soft and have some "spirits". HUGS. Why are they doing BRAC now versus 2013?
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I was supposed to do it back in 2013, but I never did...things got so crazy with infections and surgeries. My gyno told me last month that I needed to do it NOW. She is recommending hysto, but said to do BRAC first. I'm gonna have spirits, great idea.
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Tang - look on the bright side. It's Thursday. Unless gyn takes Friday off you still have tomorrow. My MO never leaves messages even though I think I've OK'd it. A phone # but does not ID it. Fingers crossed that it was just someone being extra careful about leaving any message.
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Tang - why wouldn't they just take your ovaries leave the uterus? Why more surgery then you need, unless there is another abnormality involved? There are lupron shots too; they work. Sorry you missed your call. I did the BRCA too so many women with BC and ovarian CA in our family. Turned out negative! Hope yours does too. It's a nice relief especially if you have daughters.
Sassy- I will check it all out. Thanks
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wow sas you were busy....how is everyone?
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Blondie, hello ....cold. Hope you are warm with less things going MIA. How did weight bearing test go? Are you in a private or a semi? Window or doorside? TV? Why no newspapers? They usually circulate something. Ask for the activities coordinator. You can either amuse yourself. With trying to have her find something to interest you. Or she will really work at it
do you eat in your room or is there a central dining ? Any funny?0 -
rosevslley, I have had a headache for a couple days so I have just been skimming. Not really reading . But I saw a post to you about chemos from sas. Pm me if you want...I have been on 8 in a 3 1/2 year period. On a combo of three right now. Don't have a lot of answers, but I can share what I have been on if you are interested. It has been managing my stage 4 well.
Good evening all
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Sending a lot of positive thoughts and prayers to everyone.
May You find comfort and peace in everything you are facing.
Take care, Need to try work on my breathing . Hugs and more Hugs Debbie
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this is my mom (89 next month), my younger DS and me in the back, at lunch. Mom has been after me for an idea for a gift. Don't need or want anything. Then I remember that I need to renew my passport, so she'll be helping with that! Yeah. We look more alike since I've been blonde. Haha
I didn't get a pic yet of the two designs I stitched, too tired now and most of you guys should be sleeping by now. I'll get them tomorrow. Oh yeah, they approved my design and idea for the quilt.
Sassy, travel with the quilt means that someone books other quilt meetings to show the quilt and sell raffle tickets. It's given to the winner at our quilt show that's every other year. This one will be for 2017.
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Smarrty you three look so alike, hAppy & healthy. Oh so the quilt is done versus a computer pic. Beautiful. I'toying with color simply because I m bored. I' m thinking straw blond. Very light. I was in love with those colors a couple pages ago.
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Good evening, owlettes. No position I can sleep in after biopsies of both breasts--I'm not a back sleeper and both sides lead to pain in one or both breasts. Guess I'll be up reading tonight.
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http://www.ulta.com/ulta/browse/productDetail.jsp?productId=xlsImpprod3560065
Sassy, this a spray hair shampoo that has blonde coloring to it that's works very nice. This is the brand and info. Feels like fine mist, silky.
The new quilt that I'm doing isn't make yet.
I'll get back toyou on the brand. Tried a friend and very nice, can't feel it in your hair.
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Feeling a bit down today, I hate this date and always have since 1991. My maternal grandfather died on this date due to injuries sustained from a car accident involving my maternal grandmother's car and a tractor trailer in very bad weather. It was bad enough to know he was slipping away from us because of Parkinson's, but the way we lost him just made it worse.
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hugs and prayers your way mommy2
Ksusan , hope you start to feel better as the day goes on
Pappy p, how are those headaches ?
Holeinone, full swing yet..? Ha, I know you're not. Hope feeling better. Hugs
Foots, I pray your breathing gets some relief. Love ya girlfriend
Fun pic smaarty
Tisk tisk,,,,all you playing with your hair ....there are a lot of good professionals out there you know..lol ha ha
Hello and peace to all I missed
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Mommy, sorry this is such a sad day for you, HUGS Thinking of you. Hope the healing is going well.
Smarrty, Thanks maybe if I spray it . It'll give me an idea if I want to do something more permanent. That works well.
Susan LOL, just restless. Want something different. DBF doesn't know me well enough to know this isn't a good time to pull his shenanigans.
CHevy, Morning Up before you? I must be ill. Actually supposed to meet cousins today.
Patty???????
Spookie I saw your posts on Hot Flash Forum Try reading the first 28 pages.
Jazzy & spookie, Frustrated on the D stuff. Now burned out on it.Will get back to it as the mood strikes. Something's happened out there and I don't know about it.
KSusan, sorry you are having pain. This isn't the time to tuff it out. Please, take your pain medicine.
Foots, hope you got some sleep
BLONDIE, have a good day
Pain free, and happy day to all
L&H&P's0 -
Rosie, this is an example of how knowing CYP genetics can help with drug management
http://genelex.com/blog/all-that-wheezes-is-not-asthma-youscript-helps-in-tough-patient-case/
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Yes! And I'll bring the Margarita's & Frito's chips!
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Yes Morning Sass! I've been up, but finding all kinds of fun things to watch... I just HAD to re-post that last one over HERE! That Julie is as crazy as I am.... Ha!
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CHEVY,, you dirty old lady.......
Morning Susan, Sas, Ksusan, Smarrty, all that is up...
Smarrty, marvelous photo. Wow, your mom looks fit as a fiddle. Congrats on the quilt being chosen. I admire your craft & discipline.
My daffodils are ready to bloom ! Yikes to soon. I have hundreds of bulbs, only the ones in the full sun, next to the stucco are up. Also have pansies blooming. Our weather has been fabulous, high 50s. That will change but so sweet to have a blast of spring.
I am feeling good. Shoulder will take time. Getting dressed, undressed is difficult. The excercises are painful, but I am not sick, so thankful.
My DS turned 32 on Wed. DH & I went to dinner with him, DD & 12 of his good friends. Love spending time with my kids. Really hoping for a grandkids. Now that I am retired, I could be one of those full time granny sitter. Hmmm......someday, maybe....
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ty everyone on the anniversary of my granddad's death. Out of my three granddad's (maternal, paternal and step) I got to know him the best and that is what makes this day so hard on me. My paternal granddad died when my dad was in high school and my stepgrandad is still around but I don't get to see him much, but i keep tabs on him through family.
sounds like a 50 Shades party is going on in that aisle lol
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Chevy you crack me up! Not in a million years could I see that Home Depot aisle sign in that light. I saw a TV blurb on that book everyone is talking about 50 shades of grey.. geeez a love story about bondage? They brought experts in about the correct way to administer bondage? Oy.. Then they switched to takes of Saturday Night Live's anniversary. I howled. Brings back so much of my childhood.. love that show. Tiny Fey for president! Oh yeah.! I never realized how much of the show is ad lib and off the cuff. Brilliant comedy.
I have to get fasting labs on my 13 year old. We explained why we needed them and that it's just one night and she could go to Mc Donald's the next day as a treat (she likes their egg Mcmuffin sandwich)... What does she do? We find cheetos all over the counter this morning. I am just disgusted.
Momof2- sound like bad car wrecks have colored your life in a miserable way. You don't drive because of car wrecks and the anniversaries of them and other deaths of beloved family members are annual sad days. Maybe finding a therapist to make peace with the fear you feel around car travel would help? I know watching the news doesn't help much. My MIL never drove either. Died at 78 and never drove a car. You can over ride a phobia. It just takes time. I used to have a real fear of suspension bridges, the big ones. It just sent me into a panic.. I think it's funny now because I fly over them at 50 mph constantly. It just took some work. I wish you peace today. (((hugs)))
Hugs to you all. Love the photo Smarty. Holinone- PT after shoulder surgery is hard work! It sounds like you are coming along! Our flowers are budding and some flowering too.. way early. Weird.
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Sas, I'm just going to keep on with the D3 and calcium as is. No problems with it.
I may not be posting for a few days. A BCO sister on another thread is about to get her wings. The family has been told hours to days. The thread is locked. It never shows on active.
Damn this disease
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Spookie- sorry about your friend- but the wings will be wings of peace and relief and release. Joy in that. (((Hugs)))
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Hi ladies- wow have you been busy!
Spookie- I am sorry about the sister on another thread loosing her battle. May she transition easily. Hug to you, this is hard. Will look for you here again when you are ready to return.....
Rose- one of my friends calls it Fifty Shades of Garbage. I never read the book, never sounded like my cup of tea and won't see the movie either. So many good things to read and just bought Elizabeth Warren's new book and going to get into that next.
Sorry about your daughter too. I hope things get better there. Life is certainly very hard on us sometimes.
Chevy- I have seen that home depot pic before and it always makes me laugh. I bet it will be busy there for V-day tomorrow, LOL!
Mommy- it sounds like you are feeling better and recovering from the drain removal, but a sad day for you. Car accidents are so terrible and deaths from them the worst. Thinking of you today. May you find peace and comfort in your memories of your time together.
Smarty- great photo. Love the three of you all happy, smiling and enjoying life.
Sassy- thanks for all the great Vit D info. I called my PCP yesterday for a lab slip to get that checked and also my A1C. I plan to go next week once I have the order in hand. Will let you know what I find out!
Ksusan- I had them on both breasts too and later surgery on both too. I found creating a little dam of pillows around me on each side made me able to sleep through the night without rolling over on to anything and waking up in pain. Many women on these threads sleep in recliners if you have one of those available to you at your home?
Footprints- sorry to hear about the breathing problems still. Are you getting that mask replaced?
Blondie- hey girlfriend, I am trying to stay out of trouble this way. Going to PM you shortly.....
Went this am to have my massage therapist work on my feet. Holy crap, were they a mess and it was not too easy to get all those joints worked out but they feel good now. Going to do this type of work with her now periodically to keep my feet in better order. The AIs have taken a huge toll on those ligaments on the bottoms of my feet.
Wishing everyone a good Friday the 13th with only good news, surprises, etc.
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