Bottle o Tamoxifen
Comments
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PattyB - Sexty???????? Get outta here! You look so young, must be all that Avon!!
Helena, put my list in your denial crate! Awesome for you also on the no se's!! I just have the minor ones, totally doable and doesn't really interfere with my day!! YAY!
Meg, LOVE me some Top Chef!! I just watched the last 2 shows last night. I liked the one 2 shows back where Robin mentions her BC in a challenge and wins, and another guy whines that she used the 'cancer card'....MORON he is!! haha
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As always it is hard to keep up with this group! So just one comment - Helena, I intend to stay on tamoxifen for the full five years, evenn though my onc would like me to switch to an ai in another year. I do not have osteoporosis and do not want to develop it! That and the greater rate of joint pains that women taking ai's get scare me.
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pkb143 - honestly, so many folks have minimal SE's from tamox - bet you'll do just fine! Many of us are here because we're the one's with crazy bodies that seem to think they need to manifest everything on the bottle's warning label - we really are a minority, though!
btw.......my gyno said it could be olive or vegetable oil!......think I'll save the good EVOO for the kitchen, though! she did say that it could be a bit messy, though!
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****lurking*****I have been busy getting ready for my recon surgery next Tuesday.....also have one brother living with me, mom coming to help out and another brother coming in tomorrow or Saturday for a month or more. Will try to write more later but will definitely post after my surgery. I have a 23 hour stay....and hope it all goes well.
hugs
Diane
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val,meg, and helena, guess you have a good point there, not many women will post saying "I started Tamoxifen and had no side effects!" However, I do so hope I will be one of them.
LOL, val, you really asked your doctor what kind of oil, huh? LMAO! That really would be ironic to use "virgin olive oil" for such an activity, don't ya' think?
helena and kari, thank you so much! I really do think the Avon has helped, but I'm probably biased. Up until lately I haven't felt too sexty, though.
Diane, best of luck on your surgery! (What kind of recon are you having?)
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Diane - great to hear from you, thought the surgery was getting close. Sounds like you have everything sorted (as much as you can anyway) with lots of help around the house. Hope you get some sleep and just think it is another step close to peace of mind. ((hugs))
Meg, Lisa-e - very comforting to hear that you will/are taking tamoxifen as I tolerate it soooo well I am so hesitant to go on an AI in the future. I figured if I keep my weight down and with my Oncotype score being 6 then I should a pretty good chance of keeping my ER levels low.
Carollynn - I think your days are so full you forget exactly how active you are. I love your stories about all your fruit/trees and farm. Sleep it so important for overall well-being and can knock you around if you don't get enough, both physically and mentally.
Kookiesmom - lovely post. Glad to hear the side fx are subsiding for you BUT I will miss the alien baby, was hoping for a girl - thought we could all come up with ideas for names - Tammy maybe???
My DH has just come in to show me that we have a good prediction for rain this month - we had none in September. Hard for us as we own an outdoor power equipment business (ride-on mowers, brush cutters, chainsaws, chippers etc) so money's too tight to mention at the moment. Also our land is dry and crispy. Fingers crossed.
Hey Rachel - hope you and the kid are sleeping/eating/playing well. love ya
Kari - its in the crate, gorgeous one.
Hi Leggy.
have a great day/nite everyone
soft hugs
Helena
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okey- gotta start back on page 159...
For my SciFi Tamoxipals, I have been playing with this whole analogy of SFBC being like being from another planet, or abducted by aliens... and walking home today I had a bit of Wizard of Oz... but these ideas come to me when I don't have pen in hand... but clearly you all know what I am talking about (that is, all the Sci Fi Tamoxibabes do, the rest of you are probably literate or something... ) But like, we all have been to this other SFBC planet and we eat different food and look at life differently and we've sure been through some horrible medical stuff, been probed and xrayed and sampled and nobody seems to understand what it's like except other people who have also been abducted by the same alien life forms... don't even get me started on the TVUS wand
The Wizard of Oz thing is like we're all just trying to get back to Kansas and SFBC is like the Wicked Witch of the West threatening to come back and get us, my pretties... Follow the Yellow Brick Road of instructions from the ONCs through all the dangers... poppieeees... radiation fireballs...
And I'm wondering if the devout Muslim women have an advantage during chemo wearing burkas over their hair....
QOTD- first I must say that all of us using the euphemism "down there" and "down under" for our female parts well below the boobic area, are really not suggesting that Australia is a big vagina. Second, I think its alright if your sis is sensitive about turning 50. I sure didn't like anyone pestering me about my age as I turned 40 and although we're all soooo grateful to see another birthday- as cancer patients and as just people - still, it's quite normal to have trouble with the big 5-0. I also believe in forgetting my age as much as possible... based again on yet another study from a long time ago, but in general those people who live past their 90s riding bikes and in general good health usually did not count the years. (I was a little kid when I read something about how they studied all these communities with longevity like that, some in Ecuador, some in the Himalyas to see what they had in common, and there were 5 things but I could only remember 3: They didn't count the years, they didn't worry about their children and they didn't eat red meat). Of course with all this SFBC its all about the numbers and our age age age age AGGGGGGGGGGEEEEEEEEEE augh. "At your age...." blah blah blah f*ck off!!!
Hey Chelev- of course you can picture me with my son on my back on the trainer, cause that's the only way you ever saw me, with my son on my back! Man we have such a good time. He likes it a lot and it puts him in the mood for bed, so its our thing now, after dinner I change him and he starts making noise b/c he thinks I will put him in his crib but then he sees the carrier and starts jumping up and down (he gets excited whenever he sees the carrier, it makes my day!) and we work out- me watching Biggest Loser because I only allow myself to watch while i am on the trainer- and I have a little DVD player on a shelf he can watch while we're on the trainer. When I looked up the information about relieving night leg cramps for someone on this thread, I saw it said walking before bed keeps night leg cramps away, so it works out great for both of us. Time together, love of exercise, he gets tired and starts pulling my hair 10-20 minutes in and I put him in his crib, grab my hand weights and finish up my hour.
For everyone who is saying he is too heavy- I am wondering if you are joking? I have to get some updated pics to show you- we are not using the moby wrap any more, not even an ergo carrier, now we use a serious Kelty child carrier, I think it goes up to 50 pounds. It was always my plan (yeah yeah another of my plans) to carry him - or rather to "wear" him from the beginning, so as he grew so would my ability to carry more weight. I started training before he was born wearing 2 of the liter bottles, and aside from SFBC surgery and RADs, continued to wear him according to plan. This HAS to be good for me, I am at least 30 pounds overweight, and could easily gain 30 pounds instead, I'd be carrying the 30 pounds if I did anyway, its good for my legs- and I am sure bend slowly, and it must be good for my back, somewhere I was reading how important it is for us to strengthen our backs as we uh... age... My heart gets pumping and that has to be good. We were out again today, to the playground on the River, took the subway there, walked to get my lunch and to the playrgound, maybe half a mile, i have to check but there's the 3 flights of stairs (took elevators too) up from the subway, then after chasing him around the playground for a couple hours I carried him the mile home, at a slight incline- that really got my heart pumping and he always falls asleep sitting up in the carrier its so funny... people keep saying I should be the one getting tired... I just LOVE wearing him out with playing and running around, especially considering we live in a closet...
Period stopped the floods after about 3 days... boy did that stink. On to page 160...
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A friend on an AI said that at first her joints really bothered her, but her body has adjusted and she is feeling great now! So hopefully for any of you/us that will need to go on an AI, let's hope for no SF se's!! Very scare though, all this SFBC crap!
Ok ok...I'm gonna have to try this 'oil' thing soon!! haha! they won't look at me funny at the checkout like they do when the Astroglide goes gliding through their scanners! haha PattyB, virgin oil is ironic now isn't it! haha
Diane, yes...what kind of recon are you doing? Best wishes sweetie for an easy go of it. Thankfully, your family sounds wonderful and will be there to help with you and the little ones!
Helena, praying for RAIN RAIN RAIN...doing a rain dance at my desk for you and your DH's business!!!!!! Coming back in from the Physical Therapy appt. at lunch I saw a lot of smoke, then smelled it in our office, it was coming through the vents. A couple of grass fires are out there. Where I live everything just completely dries up and turns brown for about 6 months, water bills double. I miss living in the midwest and south when we'd get the storms (minus the tornadoes) and rain! Oh...so I can't stop eating! I've gained a pound. Put my denial about it to take off the feed bag in your crate please.
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oh of course...I was just wondering about you Rachel, and you posted while I was typing...cross dressers!
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on the happiness /rage thing... Val61 reminds me... as I was observing everyone over the summer beefore I started Tamox ac ouple weeks ago, I do remember Helena and Mary at first saying how nice they were being to everyone, how it seemed that Tamox had nice-ified them... and then a couple months later both of them talking about ANGER and how angry they were all of a sudden. Of course stuff was happening in their lives that may be the real cause, but I think its kind of interesting because I am really happy and relieved these days, maybe just relieved that I didn't have some big crushing SE and of course I also had the good mammo. I had very RAGE filled days before Tamox... I am guessing on my theory about how my body may deal with Tamox screwing up the "normal" estrogen reception that I might get pretty ANGRY in a couple cycles as my body will probably also try to re-route and re-wire to overcome the disruption from Tamox, the same as it will try to do the same with my periods and everything else. I also have frikin dog-nails my whole life. Eveyrone was jealous of my nails because they grow fast and strong (meanwhile I had to keep cutting them off because I played the guitar plus after they get long they are gross if they get longer nad start to curl). It will be interesting to see if I get that nail thinning you are talking about. I wont like it.
I can't believe I am going to have to buy softer TP. I am using the recycled stuff, seventh generation, so someone please tell me what's the good soft kind? Don't say charmin, that one causes trouble on the other side....
Wonder how long it takes to get the frikin Vitamin D3 test results? I expect my ONC will just send them without my asking but...Allie?
PattyB deux (as we have PattiB and PatMom and I am already confusing them) you put it well. I really need to have a laugh about this crap if I am going to make it through the gamut... Yep Shay, come have a laugh with us... and YAY for you finishing up chemo yeah!!!
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Hello, home from work and dh has kids w/him at his mom's. Peace and Quiet!!!!!!!! Well I have to go start the laundry!
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Had to page back ...
Hi Shay - all the best for your last chemo..YAY! We will be waiting here for you
We are now in Pink City over here - Breast Cancer Awareness Month. Having a Cancerversary party on 31 October - wanna come??????? Anyway decided not to call it SFBC party as I had a few strange looks from the Non-bc people - more than usual that is. It is a celebration of life and people can pop in for a glass of champagne or stay for a bottle. Getting excited about it actually especially since my birthday was a wash-out.
Hey Rach - nicing people all over the place now ... still have the "rabid dog" syndrome but I think that is just being a mum, worker, cleaner, therapist, lover (well that is just a damn lie at the moment..), patient, sqeaky toy and all round miracle worker - bound to upset even the saintliest saint.
Kari - your guilt about eating is as ridiculous as mine. Look at us, we are doing OK. (remind me I said that will you.... LOL).
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Hi Mary. Enjoy the P&Q.
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on to page 161-
Oh yeah please don't tell the shrinks about us...
they might get worried we'll drive off all their business!!!! Olive oil... down there? What are we, salads?
Oh there's a wrinkle corrector that works? How did I miss that? PattyB part deux, please help the blonde here... pm me a link?
Uh oh, not even Charmin eh? Well I wonder if they make the kind with aloe like they do for tissues, that's what I use in cold and flu season... wouldn't TP with aloe be great?
Thanks all for the kind words about my son
And don't kid yourself, I get tired too... yesterday was day trip to Philadelphia to see my friend for lunch - Stage IVa tonsil cancer and just passed one more PET/CT scan woohoo- and then saw the DDS and came home. I was too beat to post! Sleepwalking. But did get the walk with my kid done
(and of course ate a pizza and cocoanut sorbet, oh well)On the salon- its really Joseph, and he's very happy to travel... but I would LOVE to have you guys come here!!!! Also we started an email list where you can ask Joseph chemo-related hair questions and your hair professionals can tap him too. Go to his web site
http://www.josephmullencolor.com
There's a link for his email list. Next best thing to being here
Oh here's the link for the email list:
Meg major hugs on the oomph bday- oy! I forget if you looked into Zometa?
PattyB part deux- I haven't repeated the info I usually repeat about the Tamox SEs, here's a couple links to studies that showed that although SEs are reported on Tamox, the funny thing is that the same SEs are reported by women on placebo- except the hot flashes:
http://www.cancer.gov/clinicaltrials/digestpage/BCPT
and reading all the posts on another groups experiences with Tamoxifen on this board - I can give you tthat link too, they made it REALLY clear that they are only posting when they had a problem with Tamoxifen, and then... they stopped posting. Because they are not having a problem with it. I don't know why there's some major effort put into scaring women off Tamoxifen, but its just one of those Internet things that gets out of hand. Yes, there are some people who can't take Tamoxifen, just like any other drug. But the great big wide majority doesn't have a problem, so why should you?
We are totally into Top Chef.
Hey Diane- best to you for surgery and recovery and boobage
Well I left the kid alonoe to play so I could catch up a bit (and cross post again with Kari!) and Helena I am having some weird stress dreams in the mornings - but I think that's because my friend gave me some poop a couple days ago... he was all fired up about something going on in the building where I have the apt that i am suing about, and I was like, OK, what can I do about it? I mean I am already in a lawsuit with them... what else? He was just being pissy and wanted attention I think, but so stupid, ya know, a man, can't just say he misses me, has to pick a fight. Like i need that...
kari- did Robin on Top Chef say it was Breast cancer? I know she said cancer but I didn't hear breast cancer. Was moronic what the guy said, they are soooo jealous of her simple food. Men, what can you do?
Speaking of which, men... hmmm... I need to get one... if just for a little while... on staying on Tamox for the 5 years, someone posted recently a new study about problems staying on Tamox for the full 5 years... so I am hoping in a couple years they will have figured that one out... they said less than 5 years was better than the full...
man I am trying hard to catch up...
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meg- cottonelle- got it, thanks! Did i ask you if you are considering Zometa? Especially with bone stuff? I start Feb 1.
helena and kari- what's this about eating stuff??? as long as you aren't looking for the olive oil....
OK gotta grab kid make sure he's alive give dinner and work out and then come back and see if I caught up or screwed up posting here...
hugs y'all
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my bad Rach, Robin said 2 kinds of lymphoma!! I have SFBC on the brain waaaaay too much
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Helena, your upcoming party sounds FABULOSO!!!!!!!!!!!! I want to pop in for a bottle!
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Rachel, I'm a blonde, too, so you can't use that on me. I'll email you the link (I think it's on my profile page, too) if you tell me what "SFBC" stands for. (Skenky, friggin' breast cancer?) LOL, now I'm having one of those blonde moments.
Thank you, thank you for the Tamox links. Checking them out NOW! I'm not usually so resistant about these things, but for some reason, I'm reacting to this like I did to Zocor, HUH UH! NOT ME! I am NOT taking it. (Then I did...) And my DH just picked up the prescription for me, so it's here, waiting...yeah, I'm planning to start tonight.
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probably will cross dress with someone here
SFBC - Stupid Fu*king Breast Cancer - but skenky friggin is good too. Works for me.
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PattyB part deux, I was EXACTLY the same, i was NOT going to take Tamox... but I did the research, read the threads, and especially one post from a woman at Stage IV who took Tamox and became NEC (No Evidence of Cancer). And the gals on KAK's thread really helped. And then this one. No problem, we have alien babies and we're making salad in our pants... and SFBC can go to hell where it belongs.
OK so I got my test results and there's a zillion columns and for the D3 it said this lab didnt do the test because it was a duplicate test from the hospital, but I can't tell if the D3 test is in these pages, I think so... I wrote my ONC to ask but figger someone here would know what to look for? All my results were within the normal range except two: "TOT PROT" and "ALBUMIN" (albumin? like I'm a chicken egg?) both were low. Anyone got a clue?
back to kid, be back after dinner and workout
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oh and PattyB part deux- I like what Dolly Parton says, "I love it when people call me a dumb blonde because I know I'm not dumb and I know I'm not blonde"
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Hi all you Tamox Ladies.
Just thought I'd report in. Started my third box of tamox and so far so good. SE's seem to have settled down. I've also reduced my painkillers intake. Soooo - now I'm wondering is it a good or a bad thing that the se's have settled. I think I read somewhere that the more se's you have the better it's working. I get gentle hot flushes occasionally, don't need any salad dressing (if you get my drift!!), hair is growing very slowly but I went without head covering a while back when the Hot flushes were stronger, starting to sleep better and am losing weight slowly but surely - 18lbs since I started tamox and started exercising. I do get emotional every now and then and DH would be quick to remind me that I can get moody (well he'd probably say b*tchy and he'd be dead on!) - but sometimes I wonder is it any different than before SFBC? Still have an irrational fear of recurrence - nightmares about it sometimes but I guess that as time passes that will ease.
Joined a BC info group last Friday and we will meet for 7 Fridays - interesting!! We laughed a lot which was good.
Well - it's good to check in with you ladies. By the time I've caught up with reading all the posts it's time for me to go to bed - Rachel how do you do it??? And with a buachaill beag (little boy) to see to as well - I feel so inadequate. LOL!!
Nite!!
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Albumin - serum
Albumin is a protein made by the liver. A serum albumin test measures the amount of this protein in the clear liquid portion of the blood.And I'm guessing TOT PROT is total protein? makes sense in the above description
My Vit D level states it clearly, better ask your onc??
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for heaven's sake, now i'm cross dressing with Ainm!
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Rachel, http://www.chemocare.com/managing/hypoalbuminemia-low-albumin.asp...how low was your count? side effects from meds could cause low count. Tamox?0
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albumin range is 4.0 - 5.2 and mine is 3.4
TOT PROT range is 6.3 - 8.1 and mine is 6.1
column headings are:
NA
K
CL
CO2
GLUC
BUN
CREAT
TOTAL BILI
TOT PROT
ALBUMIN
CALCIUM
AST
ALK P
ALT
they did the CA 15-3 that's for ovarian, right? although it says it can't be used to determine presence of absence of malignant disease
BY53- no range here and at the bottom of the page is the note " CANCELLED: Vit.D 1,25 Dihydroxy REASON: ACCESSIONED IN DUPLICATE
Then there's a whole page with results:
WBC
RBC
HGB
HCT
MCV
MCH
MCHC
PLATELET
RDW
Automated Differential
NEUT
EOS
BASO
LYMPH
MONO
LUC
ABS NEUT
ABS EOS
ABS BASO
ABS LYMPH
ABS MONO
ABS LUC
any of that sound like Vitamin D3?
Did they screw up and not do the Vitamin D3 because they did some other thing they shouldnt have twice? argh.
And AinM I think we all do what you are saying about obsessing about SFBC coming back.. is why I was thinking of the Wicked Witch from the WIzard of Oz as I was bringing my kid home... like I was having too good a time, enjoying life too much, like I used to, and can't forget the feeling of having it all taken away from me in an instant, and no assurance that it wont come back, and worse.
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Oprah had a show that had Dr. Oz (haha) visiting areas where there seem to be people living into their 90's,100's and very fit to boot. Two things in common were they enjoyed their livelyhood and they had a great sense of comradery (sp?)/support system/family. I only remember that there was an area in California and Italy, and a few more. That show was on in Oct. or Nov. last year.
PattyB - Yes I have been called PattiB, Miss P, P, Miss Patti, Patticakes, peaches, peachmeat, and Mrs. B. I have been fortunate and the only SE from Tamox is Tamoxipause and hot flashes, which are controlled somewhat by Effexor.
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CA 15-3 is the BC tumor marker, CA 125 is for ovarian. I hate blood tests, hands are sweating . .
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j414- I am going to be reaaaally po'ed if I have to take another blood test for Vit D3. I mean, aside from everything else, I specifically rememebred to ask for that, even zonked on Xanax, and they called my ONC to ask if I could have it (oh boy like its a Christmas present) and he said I should so... wtf?
Grrr. I am not good about getting news and having questions and having to sleep on it without an answer. At least it's not Friday.
And I don't think it could be the Tamox, I was only on it a handful of days before the tests.
Grumble grumble. Wonder if my GP tested for D3 at my physical... gonna go look at those old reports...
I am SURE though that if there was anything remarkable my ONC would have said something. Clearly I am obsessing. See Ain- you ain't alone. And I LOVE when you speak the Irish? Gaelic? whatever I like it! Wish I could hear it
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Rach - no response from me because I have no idea. The CA125 is testing tumor markers for ovarian cancer like J414 said. But don't forget all the crap I went through - I had my periods at the time and the results were elevated.
but .found this on a web page though for Albumin:
Normal Results
The normal range is 3.4 - 5.4 grams per deciliter (g/dL).
Note: Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.
http://www.nlm.nih.gov/medlineplus/ency/article/003480.htm
... though I am sure you are researching the hell out of the results....
My dad just got out of hospital after his 2nd hip replacement - he is 86 and looks amazing and he is fit and has all his marbles (debatable sometimes!!). Hard though as he was a horrible father when we were children and the worst possible husband to my mother. Longevity doesn't mean happy life as far as I am concerned. His secret - bit of luck.
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