STFU (Shut the F*** UP)
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Chevy. Ha ha ha. I am always here just don't post much. Crog is from my first and last name.. We got a little snow overnight. None showing on the street but a little on the grass. The temp right now is 34 and partly cloudy. They say we are in for a mess on Monday. Course I have to have an appointment that day. My husband will drive me as I do not drive in bad weather anymore if I can help it. Not sure if I told it on here or not but I had to go take another driving test (nothing like feeling 16 all over again with the jitters of taking that test) because of my right leg amputation and I passed and can drive with my prosthetic, says so right on my license... Ha ha. No I do ok and think better than some of the people out there that have two good legs.. Ha ha ha
Hope everyone can have a good day today..
Cindy AKA Crog or Squishy -
Golfgirl, Short note off to luncheon, I asked for Kira & Binney's input after Chickie developed edema after her trip... The flying thread had started previously but was a bit lost in time. . They gave their considered opinions on page two. Put in your favorite places. Too many on the boards developed LE after flying. But way over my head. That's why K& B's response are so important.... Off ride waiting XOXO
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December 11th, *STFU* 1 Year Anniversary Party!
I'll bring the 3 bean salad. -
golf girl.....there is a great book out called...Lymphedema.....A Breast Cancer Patient's Guide to Prevention, and Healing.....by Jeannie Burt and Gwen White, PT.....check your library...if not Amazon, or Walmart.....great read........right there, hands on....Would suggest library first, to see if you like it, then purchase....
Had my LE for over 2 years.....happened atound the 4th week of Rads......gave up...now back to the beginning.....hopefully this time we get it right......... -
April, Aromasin kicked my butt. I lasted 4 months. I am now on Femara 6 weeks and it is a lot better so far. I did a couple of things differently this time - I split my pill and take half in the morning and half in the evening. (Have not told the MO that
). I am also taking Claritin. I read on other threads some people find that helps since it is an antihistamine. I may add glucosamine/chondroitin. Some people find it helps to take the AI at bedtime.
My MO was very willing to try different ones to find one that is tolerable. Don't just suffer. Yell, scream, kick butt until your MO listens and helps you! -
Sav.....Letrozole...(aka Femara) is kicking my ass big time......thinking of quitting.....MO, got annoyed with me last visit.....great lady, but leaving the room she said what I thought was a little abrupt....WELL IF YOU DECIDE TO STOP, PLEASE TELL ME!!!!!!!!!!!!!!!!!
I have other issues too before Femara, and I do not deny that, but the Femara, has taken my joint pain to a much higher level....back, knees, feet, hands...some days worse then others.....a good day is when the pain level is a 7.........oh well decisions to be made.........
Now I heard you should not 1/2 the pill.....and you should not do every other day.......Web, MD.......probably has to do with the mechanism of action, and the 1/2 life......would think that any way would be better then not at all, but guess not.... -
April..........Letrozole.........cry for no reason .....give me one and I will cry all day......horrible Med, no matter which one.....some get nothing...I get every SE except hot flashes....should I say yippee to that.......
Add to that LE......and was told last night by someone......I should consider myself lucky that my tumor was not big.......effen......ahole........ -
I start reading and get interrupted with work things---GRRRR
BTW I think I read or heard about not cutting it in half too, cll u'r pharmacist that's what I do, they know more about meds than most Drs.I only learned that cuz I worked in a pharmacy for a couple of yrs PT. And when I told my first Onc she said she could change this med, I did say what her opinion for me was and she did say this one is the best for me??? but she didn't want me to suffer, I should have listened and changes cuz it's much worse than suffering it's permanent oh and suffering and Ducky I bet ur's is permanent too. And now we have to live with it, but I didn't know it would be this extreme rwally or I would have changed then, why bother now.I'm in remission now, everything is quiet so I don't want to take the chance of not taking it, that's my thinking and I pray I stay in remission lot longer, but I still feel like chit like all or most of us do. Oh my sister is also in remission so we're both doing good tht way, she's on Femara and does not have all the SE's I do, but that's an individual thing.
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I just read this nw Ducky they said u were lucky--were they trying to rhyme or did they really think that.
That's a STFU moment---oh wht a thing to say, if they only knew How "lucky" u are.
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http://www.hulu.com/#!watch/568442?partner=flipboard
Is this nuts or what? I mean am I too old to even think this is a good idea? '
I mean using weed for medicinal purposes is ONE thing.... but just for the hell of it, is just amazing to me.... -
I can't get it Chevy---but it is COMEDY CENTRAL u know.
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Hi, Ducky. I checked with Dr Google about splitting the letrozole pills but found nothing conclusive about this particular med. It's a good suggestion to check with the pharmacist and I will definitely do that. The only things I found consistently were to use a pill splitter and to not split pills in advance.
I'll let you know what the pharmacist says. -
Sav.....my pharmacist told me no splitting....never asked about every other day......however I heard the drug stays active in your system for 2 days after you take the last one for that day....so maybe every other is better......but....the question is...how much active ingredient is left in you system on the day you skip........bullshit isn't it..... -
luv my goats....love the fry pan photo, I need to learn how to do that, cut & paste, my computer skills are weak...
Chevy..aka..Ed Dahling, what a beautiful wedding photo! You must of deleted it, I saw it briefly, had to get stuff done, came back and it was gone....When you have time tell me about your Coors job, my DH is a dedicated consumer. I do enjoy a Coors light when its really hot..& you wrote a book...?
Cami, hang in there girl, happy to read this morning that you are in remission, I love reading all your posts
Ducky...thx for the info on LE, I will reserve that book from my library, if they have it...
Sas, golf girl is perfect, Holeinone....just one of my many fantasies...
Ok, my project for today, do not laugh, go ahead u can laugh, I am ordering bowling shoes online...I have big feet, need to get men's but my friend here signed me up to sub in the bowling league...nerdy, but get me out of the house since I took the school year off,( I work with sp. Ed kids 4-6 grade ) medical leave...I hope I can get my average over 100... -
Teka, I am RSVP ing to the Anniversary Party...crab stuffed mushrooms
Crog/Squishy...congrats on passing your test...I am sure it was back to being sweet 16..
April, Al s have me a little worried, among other things, I will start the end of Feb.,after rads, my SIL went off them..could not do it...I am more concerned over the emotional part, what you are going thru than the physical SE...good luck, I hope it gets easier for you -
Chevy Dahling...did you see the CNN special on medical use & the 5 year old with horrific seizures ? That was just amazing how it helped that little girl...I cannot help but wonder if years down the road it they find some value with bc...The chemo drug Taxol has the bark of a Yew tree? Not 100% I have that fact correct, but it is somewhat close, read it twice so hopefully I am not just making up crap.. -
Teka, 3 bean salad
Holeinone, crab stuffed mushrooms -
Saying hi this afternoon. Chevy.....that song by Martina McBride.....I was crying by the time she got to the chorus. Beautiful song.
Lilli
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Try this link Cammi! DD in Orlando sent it to me, and said "What are you girls UP to?" Ha, ha! And yes Holeinone.... It is a miracle that it helps people and children with seizures! Not to mention pain management.... Hell, I might even try it.... but it amazes me that anyone can buy it off the streets.... ever since I was in High School.... And now they are going to legalize it? I mean from what the report says, up to 1/2 oz? Oh yeah, THAT should work! Ha, ha! I love "Elizabeth Dahling..."
I made that up for me, because I knew a salesgal named Elizabeth Darling....
A bunch of Stoners here! I remember when I picked up DD #1, from her friends house, to take them somewhere.... When they got in the car, I said "SOMETHING SMELLS LIKE CATNIP IN HERE!" I heard snickers from the back seat. Damn kids!
Thanks Lilli.... I mean I cried too, when Janie gave me that CD..... She took it harder than I did, when I told her I had Breast Cancer.... 4 years ago, Dec. 4th, they took it out! -
Ducky, I asked my MO's PA what we could do to help mitigate some of the side effects and she said there is nothing to be done
. No half dose, no every other day. She offered me no other help other than to say some people have such a terrible time with them they quit. So I started looking for options on my own.
I just did an online chat with a pharmacist. This was the conversation:
My question: "I have a question about my letrozole prescription. I have had such significant side effects with the aromatase inhibitors, I have been splitting my letrozole pills taking 1/2 in the morning and 1/2 in the evening. Other than not getting the whole dose at one time, is there a problem with splitting the pill?"
Her answer: "I have checked several references that do not explicitly say that the tablet cannot be split. The company's dosing recommendation in their literature is this: "The recommended dose of Femara (letrozole) is one 2.5 mg tablet administered once a day, without regard to meals." At this point, just double check with your doctor about taking it twice a day."
I will discuss it with my MO or his PA on my next visit. My plan all along was to "ease into it" by splitting my dose for a couple of months and then move to the whole dose if I can tolerate it. When I read the literature on the med, it said the med was effective in eliminating estrogen production with doses from 0.5mg up to 5mg. To my way of thinking, splitting the dose is better than quitting. But I will let you know what my doc says. -
Just lurking this week. Has not been a good week, I never thought I'd say this but Im looking forward to getting my chemo again. This week has been rough due to liver being inflamed. Start back on Monday. Im ready for this chit to be over. Weirdest thing though, stfu thread has disappeared from active topics. It lists all the others but not this one.???????
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sav....good info,...."let me know how you make out.........I am willing to try anything........just got out of the chair after sitting for about 20 minutes.....stood and hobbled across the room....left foot so bad could barely walk on it.......tell me this is QOL......close to giving up.......take my chances....knowing if I fail, the result is on me.....will I regret it then....maybe, cause I am sure, the recurrence is worse then the SE's I have now........it's a crap shoot.... -
I agree, Ducky. It's all a crapshoot whether we take the drugs or not. No guarantees of anything. -
Mary that has happened to me more than once. I have to go find the thread and Mark it as favorite again.
Cindy AKA Squishy -
Cami------loved that you loved your parents so much loving each other--Special
Jackie, I was---" < than detectable"- vita d deficiecnt in late 2007---went through the usual to bring it into normal range treatment. -Tried to study it, it's very confusing, very confusing. Vita d-causes calcium to be absorbed from the intestine. But when blood calcium is normal, vita d is suppressed in the intestine/colon(?). Some research supports that the higher end of normal blood level sample of vita d helps prevent cancer. My endocrinologist and I have had a "discussion on it for 5 years:". I have been as high as 58. Two draws ago it was 30, at 50,000units prescribed level once a month. My question was why? why the drop? He up'ed the dose to 50,000 units twice a month. Next draw after 3 months I was a 33. He couldn't answer why there was no upward change. These two draws have been during the time of the thyroid watch. But it's the Parathyroids that control calcium and calcium is respondent to Vitamin D. Parathyroids sit on top of the thyroid gland on each side.
I finally was able to put together that my blood calcium level was normal. The research said that when blood calcium levels are normal then the vitamin d in the intestine is suppressed. I could not find how? But raising the vitamin D level should have happened b/c it had been higher at 58 in one blood test at 50,000 units. ---------------So my question was "What does it mean?" Endo doc was just happy that it was in normal range. My question again why the drop?
Our discussion of five years now----was it's relationship to cancer. He is not convinced there is a relationship. BUT Docs of all specialties follow the Practice Guidelines of their Specialties. These guidelines are generally produced every 5 years, with interim meetings at 2 1/2 years. If there is a significant change at the 2 1/2 year meeting a change is recommended.
SOOOOOOOOOOOOO, why my numbers---first went up after appropriate treatment, then went down, then double the dose only went up 3 points. What does the whole thing mean?------great Endodoc---------has no answer...........
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Vita D deficiency has been determined to be pandemic---i.e .world wide. Why is unknown. Areas like Florida are known but known. We avoid sun from 10.am till 5pm. Wear sunscreen. They now have promo ads, telling us tyo go outside and get some sun for 15 minutes a day at high sunlight versus a few decades of saying avoid the sun.
Australia has the highest incidence of skin cancer in the world. It has passed rules/laws about children on recess wearing protective head gear. WE are all screwed up with the sun.........and it's benefits
Solaray sun products came out of Australia as a result of the problems there. SO a kinda advertisement----that's why solaray came to be.
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Count me in for the party! I will bring the spanakopita (greek spinach pie) and a Greek salad (can you tell I'm Greek..LOL)
As for the AI and the SE's, I am really tired all of the time too and since I work full time still, that really is hard on me. My boss has been amazing though. She lets me take my lunch hour at the end of the day so I can leave an hour earlier. I am blessed. I don't call in sick no matter how crappy I feel though and she knows that so she is cool with it. Every once in a while, she will say "You look beat...if you don't have any appts, why don't you just go home early and don't worry about putting in sick time" Gotta love a boss like that!
My MO will not switch my AI to Femara or Arimidex as since the only approved drug for DCIS at this time is still tamoxifen. The clinical trials just finished for Aromasin and DCIS and the approval is coming (if it didn't already) and that is the one AI that is chemically different than the others for some reason. It mimics steroids in the body or some such (maybe Sassy can put it in better words we can understand medically) so she did allow me to take Aromasin since I have a family history of strokes and blood clots and I am a former smoker to Tamoxifen is not a good option for me.
I asked my MO if I could take half in the morning and half and night and she said "No, it must be taken in one dose" with no explanation and I did not push for one to be honest. I tried taking it at night, at mid-day and in the morning and the only one that worked for me is the morning because I got too wired at night or in the afternoon and could not sleep.
I nap every afternoon after work and I NEVER took naps in my life except when my kids were infants and I needed sleep due to not getting any with hungry breastfeeding babies who woke during the night to feed. Other than that, even if I had the flu, I could not sleep in the day time! With this pill, no problem at 4:30PM (which is a full 11 hours after I take it) with a nap.
As for the crying, part of that is the season and missing my Mom who passed away in February of 2012. I miss her so very much and with the holidays, I know that is a big part of my sadness.
Ok, enough...hubby just got home from work and he brought us Subway subs so going to go eat them. I told him I did not feel much like cooking so that is what he came up with...works for me!
Anyone here ever try Deal Dash, the penny auction site? I won an I-Pad, a Kitchen Aid Stand Mixer a 32 inch television, a 600.00 Canon camera and lots of gift cards so my Christmas shopping is done and I got all of that stuff pretty cheap too! I highly recommend the site if you have a gambling spirit cause you could lose a lot of money if you don't figure out when to fold on the auction and when to go for it.
Ho Ho Ho...gonna go eat my sub! xoxo
EDIT: Sas, I was put on the 50K IU of Vitamin D two times in a month and then I take the regular dose twice a day now and have for the last 4 years due to low D. There is a correlation between low vitamin D and cancer for sure. Mine is up around the low normal range now...but it was really low...and the doctor said it is one of the most common things for post menopausal women! -
I was 18 years post menopause at dx and could not handle the AI's. The pain was nearly as bad as my kidney stones were but at least they would go away after a day or six. MO put me on tamoxifen. The se's were doable except for the weight loss. Three years and weight was dangerously low, 5' 10" and 100 lbs. Mo switched me to Megestrol which so far has few se's and one of them I like, it promotes weight gain.
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We have snow LOL
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Crog---------YAY CROG----SGUISHY..............ATTITUDE 1000. love you babe. Basically no one here knows the shit you went through-----you're problem of loosing the leg because people didn't do their job, then you took care of parents. Then you had further complications. It was le caca, after cow cake , after poop............I suppose you may have not wanted that known. BUT squishy,,,,,,,,,,,,,,,,,,,,,,You have come through so much ........Your parents would have been so proud how you handled the whole garbage.
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