Bottle o Tamoxifen
Comments
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Can I be Ginger?
PattiB, yes I too am grateful I work for the school district. It has been great being off all summer. I have been quite the couch potato too. I only took the kids to the pool once, of course our lovely weather has had something to do with that. I start back to work on Aug 18- Aug 25 for all our Act 80 training hours. Then school starts Aug 31. Four of our students moved up to the next Autistic Support class, one wnet to Life Skills, so we will be getting new students. One is coming from the School for the deaf that they planned to close. Looking forward to a change.
Helena, lucky you, my daughter is 8 and she is developing her breast and I think starting puberty. Thankfully she has yet to get her monthly visitor, I just hope she does not get it until she is older, but mySIL got hers at 9. My son is 11 and he is going through puberty. he has "hair down there" as he told me and it itches. Poor kid. He went from a size 12 at the beginning of the school year last year to a 16 husky at the end of the year. He is now an 18 husky as he has thick legs and butt, built like a linebacker.
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Mary - Do you work at the elementary level? We have autistic support at my school too. I work in the office so I don't work with the kids at the teaching level. I get them as messengers and if the forgot something to call or pick up stuff in the office. They are so cute, but the beginning of the year is always busy and stressful. It can't be easy for your children going through the confusing changes at such a young age. My DD was a late bloomer, I think she was just turning 15, she was under 100lbs until 11th grade.
Helena - glad you surgery went well, enjoy these years with your girls. They do grow up so fast, before you know it they will be going to college.
It tried the MadMenYourself but I couldn't download it either. Oh well, I don't have the energy or incentive to be stuck on this computer trying to figure it out. But it is a very cute program - they even had a very short hairstyle to choose - I suppose for us PFC girls.
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Rachel - TOO FUNNY!!! I had to peek this a.m. before I get started at work!! I chose my attire because I'm at the party after working all day and didn't have time to change!! haha...but I did wear pearls! LOL!!!!!!!!!!!! You are a computer wiz it looks like! Looks like I'm Marianne on the island!
Shout outs to all you tamoxi girls!
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PattiB, Yes I work at the elemenary level. I am an associate teacher. I have a 4 yr degree, just not in education. i was considering getting my teaching cert. but I would have to go for my masters. The kids I work w/are 2nd&3rd graders, on the plus side I get to see my DD, my DS will be in the Intermediate school this school year.
I go to Rads Onc for bone scan results, I hope he has them! I could have called but did not have the energy to waste.
Enjoy your day.
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Ouch, ouch - pain in my feet and legs - - kept me awake last night and has me jigging and shuffling my legs all day - pain killers are absolutely useless!!!! Aaaargh when oh when do these se's disappear!!?? My in laws visited yesterday as did my mum and sister - frustratingly they thought I looked great and 'wasn't I lucky that it's all over now'. Huh - I'm still in pain, I am still lopsided, I only have fluff for hair - I hurt and no one in the medical profession told ME it's all over so how do they know. Sorry for the rant but I'm really uncomfortable and judging from yesterdays visitors the honeymoon period is all over and I'm expected to get back to normal - And another thing - when will my bs broach the subject of reconstruction or am I not a likely candidate??? Because I have the feeling that my in laws etc will consider that side of things as me just indulging myself.
Excuse my manners - good evening everyone. I hope that you all had a lovely weekend. Slightly better weather here - showers and cool about 64 degrees F, The summer that never was is definitely gone!!! Take care all.
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Ainm, we are hear to listen, because nobody but these ladies here understand. Rant all you want!!!!!!!!!
The big question I have, When is it really all over? I am not being sarcastic. My tx is over except for 5 yrs tamoxifen.
Ainm we also have the summer that never was. Of course today it is in the 80's and humid. I love it, the sun is shining, but next week it is back to work for me. I work for the school district and summer is almost over for me.
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Morning ladies - you know what .. I am going to put puberty into my denial box as well (boy its getting full !!!!!)
Ainm - reconstruction - indulging yourself!!!! You know what - who cares what everyone else thinks - do what you want with your body. And like Mary said - rant away here. Hugs for your poor sore feet and legs ((hugs))
Well, got my 2nd lot of CA125 test results and although it isn't my lucky 29 it is 38 which is a darn sight better than 52. Wish I never had the stupid test though. Will sit tight and see what my BRAC1&2 test results are - hopefully they will come back this century.
have a great day everyone
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Ainm - just read your reply on the motivation thread as well. I too endured a lot of comments about being all finished and getting back to normal...I keep saying "now to just get past all the side effects compliments of treatment" to remind others its not all finished....well chemo and rads maybe but that's it...still have Tamox and recon to deal with and all these darn side effects! When I started Tamox that's when alot of my aches and pains came along, the hip and low back pain are the worst for me and were so bad I was xrayed and re-scanned for bone mets! Scared the crud outta me!! Stupid BC!!!! Try not to do too much exercise if the pain is that bad...ease off a bit and see if your body responds. Nice massage may help those aching muscles. I did try massage for my stiff neck, but it did no good...super bummer! Hugs my friend.
Mary, I used to be a secretary at a high school for several years when I lived in North Carolina, I really enjoyed the hours! Could be home with my DD's as they were young then, what a nice schedule I had! Enjoy your last week of freedom and hope you are feeling well!
Helena, 38 is better than 52!! We'll take it!! All these stupid tests really mess with our minds don't they! It seems we are now defined by numbers, staging, grading ARRGGHH!! Stupid BC! Your denial box made me laugh, hang in there with the puberty thing, your girls will turn into different creatures!! LOL! Maybe it will keep your mind off those tests though!
Have a nice evening all! morningday for you Helena!
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Yay Helena.....a 38 IS better than 52. I asked my first onc's (I used to get my chemo TX's) about my scores thorughout my treatment with them and mine was 41 at one point. They told me that so many other things can contribute to a higher level that they don't even like to discuss with their patients. I had no idea they were testing me at each chemo....I just happened to ask at one of my post chemo follow ups.
I am with a new oncology office since I am participating in the bone drug trial. I have not really had a good sit down with my new oncologist yet either. My first real appointment with her is not until late September. Now that I am PFC for almost 3 months I find that what I want to focus on is getting my life back to somewhat normal where I am not lurking in the rearview mirror anytime a new symptom pops up. I am sure I would have the same issues even if I didn't have BC.
Mary and Rachel and everyone else......Thanks for making this thread so enjoyable. I knew I wasn't a candidate for support groups and am so glad to have found you all online! I can get support 24/7 here from all over the world!
I am going out this Sunday afternoon with a bunch of gals that I met on the BC site that live in my area. Really looking forward to it. Will post some pictures early next week!
hugs
Diane
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Just popping in and out- was off looking at real estate today, and visiting friends. Hot like Hades today.
What's PFC?
What's the Motivation thread?
Hugs all around...
Mary, you know how I feel about the frikin RAD ONC with the bone test results, but I ain't twisting your arm b/c you just had surgery. Mucho hugs- and lemme know if you want me to call 'em.
Helena- HOORAY!! That's just so damn weird. Stupid test. Stupid Stoopid test. And the BRCA wait, that's just insane. They must have Koala bears in the lab.
Oh Ain- major hugs for the insensitivity you are suffering.
OK gotta shut up. Hugs again.
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Yeah, STUPID BC!
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" Mary the bikini is stunning and Kari you are soooo Marianne
Rachel - Motivation is a thread in fitness and getting back into shape forum.
and STUPID STUPID STUPID BC
I'm off for some banana cream pie at the lagoon
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I decided to record the nighttime saga but only because I can't sleep. By the way, we now have a large fan at the foot of the bed and I no longer drink out of a glass. It's bottled water only for this girl. Well I think I'm still a girl.
Preparation
Hand towel. Check.
Two dry pillows. Check.
Fresh glass of cold water. Check.
Roll heavy bedspread to foot of bed. Check.
Window opened as wide as it can go. Check.
Open tacky Japanese paper fan found at a garage sale. Check.
Take hand full of pills some of which I have no idea what they do. Check
11:00 PM - Sleeping aid kicks in.
11:46 PM Wipe off sweat from furry head.
12:13 AM Flip off blankets and grab tacky fan.
1:05 AM Sweat some more. Change cotton t-shirt and flip over pillow #1.
2:16 AM Nocturnal bladder calls. More fluid exists the body. Drink from glass of water in hopes of preventing dehydration.
2:30 AM Attempt to go back to sleep.
2:55 AM Scoot over closer to husband to get out of the puddle of sweat. 10 minutes later - body heat causes husband to sweat. Move back to wet spot. Drink more water.
4:17 AM Wipe of head and face with hand towel. Swing wet towel at daughter's cat drinking out of glass of water. Vow to only drink from bottle with a lid. Try to shut out image of cat cleaning self the day before.
5:33 AM Accidently wake husband up while changing to pillow #2. Ask husband to feel how wet pillow number one is. Watch husband grimace. Hope husband isn't thoroughly disgusted by soaker hose wife. Note to self....Don't mention this to husband again for fear of disgusting said spouse and encouraging his dreams of younger dry female.
6:00ish AM - Finally fall asleep and dream about beautiful waterfalls. Oops...that's me sweating again.
8:00 - 8:30 AM Time to get up. Change to dry clothing. Fake laugh at stupid husband's recommendation to sleep on a shower Curtin. Have coffee, read paper, add the following to my list of things to do:
1. Research: moisture wicking pajamas and herbal remedies sure to be found in our tie die warring, hairy legged community.
- Add grapefruit to shopping list in hopes of having a short reprieve from hot flashes. (Grapefruit prevents Tamoxifin from working for 48 hours) Recall chemo.....scratch grapefruit off list.
10:30 AM Doctor returns phone call regarding relief from Mount Saint Helen hot flashes. Only option.....hormones. Weigh death over hot flashes. Quickly choose hot flashes.
My savings grace is that I'm not moody or emotional as I had anticipated.
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OMG Renee that was hysterical ... although I'm sure your nite wasn't!!!! he he he the cat, the younger dry female, fake laugh .... you've made my day (the day I'm supposed to be cleaning the house and every time I walk past the computer I hop on doh!!)
big hugs and hope you get some sleep and relief soon
Oh sorry I missed you Diane - yeah apparently the CA125 is used quite a bit during chemo and after learning how to do a search here read up a heap about it. Good luck with the new Onc in Sept - I know how you feel - last time I saw my Onc and did this stupid test I asked if I could come back in 6 months not 3 so I could just have a break - nope!!. big hugs.
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Rachel - PFC means post fucking chemo. Helena - 38 is great!! Renee - I feel your pain with the sleepless nights, but loved your recap. Hi Diane - I can see on facebook you have been having a great busy summer going with the kids. Mary - I have about 1 1/2 weeks till I'm back to work - Yuck!
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Hello off to the Rads onc. I did have the results faxed to my surgeon, but only had the CT scan results. I am sure if something came from Bone Scan before surgery he would have said something, so I am not worried about results!
OMG, Renee, I was laughing at your comical story. However I do feel for you. I have not had bad night sweats and hope that I don't. I have not been real moody either. I guess that is th Effexor working.
Well I must shower before I head out for the day.
Have a good day all.
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ok...sorry ladies...I have been MIA....really busy!
Just wanted to answer a few questions I saw..
the s/e started about 2 months into taking the tamox. I am on it 2nd time now..and have no s/e yet..it's only been not even 2 weeks.
I agree with Mary...EFFEXOR XR...is the BEST!!! Couldn't live without it!!
ok..sorry so short...back to work!
xoxo
Lisa0 -
Renee---LOL !!!!!! I have one of those garage sale Japanese paper fans too-----best 25 cents I ever spent! I sleep with a floor fan aimed right at me, the AC cranked up high and a ceiling fan too. This has been going on over 4 years (since my total hysterectomy)---I'm wondering when I'll ever sleep thru the night again.
anne
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Diane, your getting together with some other BC sisters sounds fun! I wish that would happen here!!
Helena, that photo cracked me up! I really am Marianne haha!!
Renee, OMG! That should be published! good recap!! keep us posted!! Each night when I turn off the TV and try and go to sleep lately, a hot flash triggers, then its TV back on, flip pillow and wait...last night was a tough one, it was so hot!
Mary, how did the rads onc visit go?
Shout outs and hugs to all!
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Yes Kari, meeting some local gals that I met on the bc site! I have already gotten together with a few of them already. Great to be able to chill out and talk shop or talk about everything else going on in our lives.......and Meg, I would maybe go to a support group but my 3 kids are all under the age of 4 so my time is so limited and by 8 every night I am spent LOL. They keep me hopping! In fact at the moment I am in a serious time crunch to get my just turned 3 year old son potty trained for school 9/15. He is winning the battle right now. UGH for mommy
Oh and I also work full time from home running my husband's business...hmmm no wonder I have no time for me.Renee, so far so good on no SE's on the tamox. I have only had a weeks worth of hot flashes after my 3rd chemo and they weren't that bad. I dread the drenching days when they come.....and it is almost 100 here so I couldn't imagine a hot flash in this s&&t!
PFC.....yeah refer to it a lot.....one of the gals on our March chemo thread came up with that one. Love it!!!!!! I use it all the time.
Patti Sorry your summer break is ending....wishing you a good school year!
Hugs to all I missed!
Diane
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Morning everyone - thank you for all your kind comments about my 38 score. ((hugs))
I wish I could make everyone's hot flashes/sweats disappear with a tap of my magic wand or magic hose. 4 years Anne!!
Any news Mary?
Meg and Diane - I didn't think I would be the "support group" type but really enjoy it - and as corny as this sounds you can really feel the love, just like here but with physical contact. My daughters get so upset when I go, their last comment was "you always go out and leave us!!!" - once a month I go out at nite!!!!!!!!!!!!! Crikey!
Rachel - they have koala bears in the lab, kangaroos in the office and emus doing the deliveries.
Have a great day everyone
promised myself to only post once today - wish me luck
big hugs
Helena
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Leggy- was first reccomended to have hip replacement when I was 41, I felt I was too young so suffered it out until I could not sleep anymore.
Saw the Endo today on the thyroid and am scheduled for a biopsy next week, took me off the naprosyn until then so now my foot will hurt, my arm will hurt, my boob will swell more, oh well I am on the last 10 Rads so am too tired to care anyway!!
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Renee, I can so identify with everything you are saying including ingesting substances that counteract the tamoxifen and aiming that fan right at me, so funny!
Helena, pray your tests come back negative.
Well, I just started back on my tamoxifen after more than a month of not taking it. I just couldn't deal with the hot flashes anymore, especially the way they always came when I was in front of the stove or any type of heat inducing situation. This summer the heat is really bothering me a lot more than it ever did, the past few days I have no energy with this heat wave going on.
So my >5-6 week experiment without the tamox revealed that the hot flashes didn't go away completely, but they decreased in frequency and somewhat in intensity. The really annoying right hip ache went away, and my neck pain stopped for the most part. My right knee still bothers me, not that I let that stop me from exercise and yoga. I guess this is some form of arthritis that I'm stuck with permanently. The sex drive has not really returned, so I'm thinking that I'm really in menopause now and must have naturally lost all my hormone function. :{. Last period was in March. I'm hoping that the hot flashes don't pick back up again because I really can't live like that for the next 4+ years, at least not in the summer. Maybe I'll just take the tamox in the non summer months. Tomorrow I will talk with my Onc about all this.
And for those of you talking about the support group, I just finished up with one that met once a week for 8 weeks and I found it a great place to vent and to hear about other women's experiences. A year ago, even 6 months ago, I didn't feel I needed it because I was maybe a little in denial about this whole BC thing. I looked at it as a small lump removed, a little radiation for extra insurance, no chemo needed, so what's the big deal? Just move on. But now, with all the tamox side effects and the thoughts about BC possibly coming back, thinking about what lifestyle changes I'm being forced to make, the support group suddenly seemed like a good idea. And I met women close to my age as well as those much older, and many of them now want to continue meeting again once the summer is over.
Just curious, has anybody else taken a break from the tamox.? If so, how long and what results did you have? Helena, I know you did 2 weeks. I was going to do only 2, but then heard that it takes 4-6 weeks for it to completely get out of your system, so I figured, I've gone this far, let's really make it a full effect experiment.
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Rose did you have hip and neck pain all the time? I have been on tamox for 5 weeks now with no hot flashes (((yet))).....BUT my Right hip which has always given me grief over the years has flared up like crazy but some days are better than others. Also my neck was stiff for the first 3 weeks too but that has seem to subsided. Some days I feel great and then I get hit out of left field with pain or muscle spasms......can Tamox really do all this to us?
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You can do it CAROLYNN! My last day of Rads. was such a happy day! Even though, I loved the Techs. and the Rad Doctor, I was so happy to get out of there.
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Hello ladies, bone scan was negative. Rads onc says it may be a small hairline fracture since the pain is only in the one rib and not radiating. I am happy, of course I already figured it was nothing since the surgeon did not comment on results when I saw him.
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Didle, within a month or two after starting the tamox, the neck pain started up and was there constantly, felt especially when lying down. The right knee, which was slightly arthritic due to running on hard pavement years ago, got worse and has now stayed that way. The right hip pain was something I've had in the past during pregnancy and when my weight at one time got up into the 150s about a year and a half ago. So I guess it was always brewing. But my weight has been in the low 140s and this thing just flared up back in May and just was there every day, really the most annoying of all the pains I've had. Since my almost 6 week break from tamox, I've not had this pain at all, so I'm definitely blaming the tamox for that and for the neck thing. I'm praying that they don't flare up again now that I've resumed taking it.
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Renee- "Swing wet towel at daughter's cat drinking out of glass of water. Vow to only drink from bottle with a lid. Try to shut out image of cat cleaning self the day before."
even my cat laughed at that one. Renee- the Effexor doesn't work for you?
Thank you PattiB for the PFC definition, I will surely add it to my increasing foul mouth vocab
Support group- I will try to do that, but like Diane, I got this 18 month old and all the other issues gobbling up the time I didn't have BFC that now is squished into the time PFC. Gosh I like that.
Helena QOTD- and they all travel on the big bus with the stiletto on top
RoseG - Great report. Will be really interesting to see what happens in the next month and continuing, please do report again? Once again, the personal experience bears out the big study, that even without Tamox the same SEs pretty much happy anyway. Does make sense about the heat and hot flashes, is why I am starting in late September. But also after the first months the hot flashes should subside, so maybe the next summer wont be instigating hot flashes, your body would be used to it.
I'm catching up on page 125 here... on to page 126...
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Effexor doesn't seem to help but the 747 sized fan does.
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Mary ::: getting down with my bad self and boogieing:::: HUZZAH!!! OK so I guess you don't want me to go beat up the staff for delaying the results but JEEEEZ. Girl, you are so cancer free. You caught the sonovabitch red handed, lumpectomy bye bye, fried it's stomping ground with RADS, stopped it from reproducing with Tamox, removed the safe harbor of the ovaries, and checked to make sure it didn't leave any cohorts behind anywhere in your body or bones. Guess you got the best grade on "How I Spent My Summer Vacation". Is your surgery recovery as cool as you are making it sound? You rock girl.
Sooo... my lawyer is doing this Kosher Diet Delivery program, with real nutritionists guiding the meals, he lost 20 pounds and said the food was good. I have tired of the Nu-Kitchen Diet Delivery program, I lost about 20 pounds during DX-to RADS but started eating outside of the bad too much, and too much, so I am afraid to get on the scale. And that was something else I was supposed to be doing during the summer before Tamox... So I sign up with the Kosher plan and the nutritionist is really good. He knows about Reflux, i tell him about BC and he knows about the soy and then I mention the Tamoxifen. He's got loads of clients dieting on Tamoxifen and he said its really not a factor. That maybe some people have trouble with 5 pounds or so but he knows how to adjust the food or whatever. I was so excited! Now, can i stick to the food in the bag.... I start that diet Monday.
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