Bottle o Tamoxifen
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Is it someone's birthday soon ....
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I am at my six week of Tamoxifen, so far pretty happy, some minor aches but that seems to be it. I find I am losing some weight, maybe 6 lbs, I was walking but stopped when I got a flu bug, and my blood pressure meds changed to include a diuretic. Of course my cancer paranoia has me worried about the weight loss. Anybody else drop weight after starting Tam? I am one of the high metabolizers for the drug. Thanks
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Rachel - here here to the clean bad boob!!!!!!!!!!!!!!!!!!!!!!!!! WOOOOOOOHOOOOOOOOOOO!!!!!!! and for starting Tamox! ALL ABOARD!!!!!!!!!!!!!!! We will all rock this SFpill together!!
Allie, Helena & Diane - thanks for the words on recon. I had the mast with the nodes and chemo/rads so implants are out of the question. I've been told it will be a tram which I don't want any muscle cut or the DIEP like our lovely Spring got. But man, 11-12 hours under the knife...I just don't have a good feeling about that. But I will put the thought, or try to, outta my head for now. I am a compulsive freak...I can't stop thinking about things!!!
Helena, you are one tough cookie! You sound so strong to me. How long after the nips heal can you to the extra 60 cc?? Recovery time is a bit#h. Hard to keep you down when you want to go, go go!!
Lisa, YOU ARE IN LOVE!!!!!!!!!!!!!!!!!!!!!
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Helena hope you are feeling better today.
Diane what kind of Vit D do you take? My Gyn suggested I start on Citrocal with VitD, two a day. she wants me to start a Calcium and Vit D supplement.
Sorry love broccoli but do not think I can do the sprouts, they do not sell them any where around here, the closest Whole Foods is a little over a 100 miles away so guess I have a good excuse!! You would think all the fresh fruit and veggies we eat would help oh well enjoyed fresh tomatoes, carrots, potatos, onion, and garlic with a home raised beef roast!!
Rachal thanks for all the great info, hope you get along with the tamox, I am thinking of changing to taking it in the morning, any thoughts or comments? I hear it may help with sleep issues.
Carol
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Have finished my first month on Tamox ! I thought it would be worse but so far I only have a couple of HF's in the middle of the night and a slight headache during the day. Oh yeah, and my husband tells me I'm b@#$chy ! He actually said to stop biting his head off every time he asks me something.... Oh, I guess I'm not doing as well as I thought!....lol
Terri
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Terri, I found that I was very very short with my kids the first month that I was on Tamox....it sucked but I must say it got better as time went on....of course now I am going off for a month for surgery so I hope when I start back up there won't be that bitchy phase.
Kari, yeah, those traps and flaps and trams......OUCH. My girlfriend did the SGAP so only tissue was taken from behind...boobs never hurt her it was the butt. I think the worst is really the anesthesia....takes a month per hour under to really recover. She had anemia before slightly and since it has been really uncontrollable for her for some reason. She is exhausted and is the head CPA for a major builder in our area....don't know how she manages.
hugs
Diane
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I heard from the Onc., he said the spotting might be TX related, and to see a Gyno. So I have an apt. on Wed....
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okey- starting back a page ago when I just was too terrified to read or post anything...
helena- I got tested today for the D3 level, I had to make a fuss to get the test at the lab, they called my ONC, and when I saw my ONC he said they were supposed to do it. Forgot to ask when the results will be in, but it will be interesting because its' been summer here and I have been out in the sun a lot. I think I will ask again in January when I go back for next check up and start Zometa. And they checked my creatine levels too, so we'll watch that on Zometa. ONC pointed out that in the Australian study no one got osteonecrosis. No one. So will be interesting (to me) to see if maybe I have good D3 now but maybe not in January because I hibernate in the winter.
Helena wrote: " I don't deserve to die from this stupid crap and my DD's certainly don't deserve to lose their mum, doesn't mean that I am going to walk in blindly to treatments but it does mean that I will do the research and pop any damn pill that I believe is going to keep me around. "
That's exactly how I feel. One pill makes you bigger and one pill makes you small and the ones that mother gives you don't do anything at all...
Speaking of which, I stocked up on Rx's, just in case I need 'em. I got Effexor scrip in case I get bad SEs... just nicer than having to wait for them to come in the mail, and dealing with my ONC's bitchy phoneanswerer
NoCal gals and Mary, i think it totally rocks you all getting together on Nov 7. In the old days I'd have been there fo' sho', but as the kid is entering that terrible two period... uh... noooooo. (right now he is having a bit of a fit... no naps all day, and evidently not interested in sleeping now either. Ah well.)
And Mary- sounds like a trip - anywhere- would be very good for your head.
I think I took the first Tamox the morning after the nursery school open house... just wasn't taking any chances with that first impression... oh right, I should probably explain my whole strategy for starting Tamox...
- first it was cleared with my ONC to delay until September, as I am fortunate in my cancer stats, its "only preventative'
- I already despise the summer heat, this way I'll start to heat up as the weather cools down. I learned that from reading KAK's thread, they all started in the fall, and some were saying that it was actually nice to be warm on freezing nights.
- I carefully noted everyone's progress and complaints here (THANK YOU SO MUCH) and compared them to what i was already feeling, keeping my symptom list. I'd get a LOT of the symptoms everyone was complaining about, and had to remind myself that I was NOT on Tamoxifen at that time. Curiouser and curiouser as Alice in the Lookingglass would say. Basically, I already have every symptom everyone complains about, except for joint pain and hot flashes- and those two are associated with lower recurrence rates, so if I get 'em, I hope to have a sense of humor about it. (Brenda, I bought the cooliwear PJs, Renee I bought the big shammy cloths.
-I am HIGHLY SUGGESTIBLE. So much so when Kari and someone else were talking about their neck pain on the Motivation thread, I got neck pain. Only like a day or two into taking Tamoxifen, and never mind that I had been sleeping with a scarf around my head knotted in theback because of a Keratin treatment and carrying my 30 pounds on around in a 5 pound carrier for 3 miles... I have to skim over some of the SE complaints here because I will simply get them from reading them. I try to read the solutions to the complaints, and make those items convenient
-Such a control freak I am. (Yoda speak now) I did this before BC, I get so nervous before Dr. Appts that I hide them from myself. Like, I make the appt, put it in my calendar and forget about it. I squint when i see that page. I carefully picked this date, after 9/11, after the obligations I knew I'd have (the nursery school thing was just luck, I have another nursery school meeting for another school Wednesday) and because of my car and travel web site tracking rides by month every year, I can see what the weather is doing. Then I forgot about it. I knew it was "sometime in September" and later in the month because we ALWAYS get Indian summer, but couldn't push it further back because that was pretty much my ONC's limit. Helena asked me what date it was and was getting nervous that I was stalling, but I knew it was in my calendar and would come up in due course... but I was just NOT going to check it. I don't want to know until the last possible minute. That was Friday or Thursday, and that's when I started going nuts.
- One nice thing about going nuts, I couldn't tell if it was Tamoxifen, the nursery school stuff, or the upcoming check up. That's another trick I play on myself, to have something else to worry about at that time. I was so freaked out about the nursery school thing, and also having a new nanny that night, I took a Xanax that night- that is, before Tamox. So which freaky freak freakfreaking out was I freaking about freaky freak freak?
- A couple gals on the board had the same idea as I did about the timing of our cycle taking Tamoxifen. It still amazes me that no study has been done on which days of the cycle one starts Tamox correlating which SEs are reported, and for that matter, recurrence rates as well. I mean seriously, this is all about our f*cking reproductive systems, our estrogen levels, and just about ALL the SE are the same as on our periods and PMS, and they have a gazillion gals on Tamox now, how freaking hard would it be to take a poll of when they started?
--More than that, those gals who took Tamoxibreaks for 2-5 weeks were accidentally restarting at a different point of their cycle, and each one of them reported less SEs. Anyway... the gals who did try to pick a cycle day did what I would have done, they started as their periods began, as that is the part of the cycle where the estrogen would already be ebbing. What happened to them was bad side effects. So - although this is total crap in terms of a scientific study, its all I have to go by, anecdotal evidence- let's assume that is the wrong part of the cycle. I asked the gals who have no problem on Tamox, and they said they "just took it one day" and couldn't remember what cycle day it was. My fertility doc and I reasoned (now this is just total supposition) that "just any day" was more likely NOT to be during a period or PMS, because a woman tends to remember that. (loads of non-scientific guessing here girls, but best I could do) So I came up with a new theory, that our reproductive systems kind of "freeze" at the point when Tamox is introduced. Tamox "interferes" reproduction, right? So maybe the body is in a good mood and the Tamox comes in and the body says OK, hmmm, something is different but let's keep doing the usual and see what happens. Then a couple cycles later the body says WTF???? Something isn't right here, and I can't set it right, so I am going to throw a couple hissy fit hot flashes to try and shake out the leaves so to speak... and then after a couple months of the reproductive system trying to throw it's weight around it finally says oh fuck it, who cares anyway. that would explain why we still get our periods.
--Well that's my theory and since I am so suggestible I am putting that as the suggestion in my brain and hoping that makes it happen that way. It does mean that I will probably keep skipping posts about other people's bad SE's because I will get them just from reading them.
- By the time I took the first Tamox, I was already so freaked about the mammo, I couldn't tell my ass from a hole in the ground more or less which what was making me stay up late, not to mention that I have always had sleep issues my whole freaking life.
Kinda funny, I had the whole summer to not worry about BC, but I still spent every day here with my BC pals.
So far, my plan is working. I got discharge the first day and every day since- but I was having the never-ending period this month anyway. I am active and positive and productive- as I am on the good part of my period- and Diane- how did you know I had started? I didn't tell ANYONE.
I have a couple more theories about the Tamox SEs, but can't speak about it yet as I am such a frikin newbie. Just from reading posts, I have some theories based on what everyone is reporting.
Oh so by Friday i was a basket case. During the day i was OK I think, but night time is when the boogeyman comes, so I'd take a Xanax and pass out.
Oh dig this, at Sloan today, the vitals room was goofy to say the least. She asked for my port, I was like uh, have you even looked at my chart? Then she took the blood and didn't ask which side had the node removed, and I didn't think to mention it, so she took from that side >:|
Oy oy oy oy oy you just have to be on top of every single thing every single second.
According to plan, I packed all I needed yesterday, including a list of questions for the docs- oh and I line up all the appts on the same day. Woke up, got ready, ate Xanax Valium and Motrin on the way out the door, was a zombie by the time I arrived. Motrin was so the mammo would hurt less. I want them to squeeze and look at it every which way, don't miss a f*cking thing. If it's there, FIND IT.
I asked the radiologist to show me where these events in my boobs happened, as I had asked every doc previous, RAD ONC said it was all gone by the time she was there, ask the BS, BS said he only knew about the cancer that he removed, everyone pointed to radiologist, so I called radiologist and she and her staff said she'd show me when I came in. I even reminded them when they called last week and when I arrived today and STILL got a hard time from my radiologist when I asked her to show me. Too busy. Really? I waited 8 months for this appt to see you, take some time to show me what only you can. She also wouldn't let me record the appt so between my fear and the xanax all I basically get is that it all happened in the same spot on the same boob: benign biopsy in 2003, cyst in June 2008, cancer in January 2009.
It's only interesting, meaning nothing really except I was very lucky. I know so many others here who have it here, there, here and there...
When the nurse told me the mammo results were clear I had no reaction. She repeated herself, I said oh I am happy for sure but I know there's an US too and I ain't getting excited until that's clear too. So then I did a little dance after the US was clear.
Just a little one.I recorded everything at my ONC appt, so at some point I will review, gosh I just adore him. The only thing he said he was waiting to hear was that I had actually started the Tamox. Fair enough, like Helena, he was worried I might keep stalling, but that's just not how I am built. If I say I am going to do something you can take it to the bank. I fought against Tamox for weeks and drove my ONC and everyone crazy questioning everything and researching. Once I was satisfied this was the way to go, I made my plan and followed through.
But its really thanks to you gals on this thread showing me the way. I know I can do this because of you.
And that's also why I keep fighting so fiercely to keep the data straight here, separate the rumors from the facts.
Argh, too much blabber from me... and mor eto come to catch up... and kid's crying... more later...
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Rachel I love it. I have just finally started taking Tamox lst tuesday for a lot of your reasons, been spotting since day 2 ..I know I have to see the gyn but I am 6 weeks out from exchange surgery and turns out they put in the wrong implants. I was not me going nuts. Seriously Rachel I totally agree with you study on women and Taxom thanks.
kfinnigan- I went the TEs and than saline implants which I hope to change to silicone ASAP when I see my new PS this Friday. But if you have questions ask.
Malle
Malle
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Diane, the anesthesia is what worries me most, being under that long, 11-12 hours!! uh huh, I don't want to go there. I've had anemia issues a lot during my life and my blood pressure is normal but on the low normal side. I fatigue easy, always have...so yeah it worries me. Don't know if the boobies are worth it, of course I want to but I don't want to, capiche??
Leggy, glad you have the Gyn appt of Wed. Keep us posted please!!! And cannot wait. You other girls are going to really be jealous of our get together, because where Leggy works ROCKS!! We will take lots of pix though! I wish we could all have a get together, what fun!! I know there was or is a Vegas get together and a few gals from my clinical trial went on a breast cancer cruise. That's cool! Another gal on the Motivation thread has had Desert get togethers in So. Cali. and she said if its possible to have get togethers from women from BCO, then DO IT - you won't be sorry! Rach - we get together on Nov. 8th not 7th....Sunday.
Rachel, will be interested to know what your D level comes back at. Mine was 41 when they tested it 7/15/09. Want to have it done again to monitor.
Uh oh...having a mild H/F, and I'm hungry! gotta run for now girlies!
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Quickly...Hi Malle, thanks for the info - WTF the wrong implants and you're spotting??? WTF????? poor thing.
Oh I forgot to mention...normally I'm miss sweetie pie happy face (haha), but I've noticed I've shown signs of being the devil a few times! What's up with that? Some dude downtown yesterday was so rude to me, and I cussed him out! And I wasn't afraid!! Woe, that probably wasn't the smartest thing to do, but I just spewed out venom. Felt good though and he backed off. Woe..........................
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Kari, they put me on Celexa, my doctor calls it the anti-rage pill...Now I pick and choose my battles.
Hey Rachel, wecome aboard....even if you have been around here longer than me...On this board, not in age. Your still a kid. Good luck with your plan.
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oh oh i just have to add that i am so happy I got to rat out the MRI bitch to her boss... ha...
my radiologist (does mammograms, US) had sent me to this MRI doc who I knew was part of her practice but not the relationship structure. So like here it is 24 hours into DX so you know where my head is at, right up my derriere, and I looked up MRI on the Internet and it said if i was nervous they'd give me a valium or something. Meanwhile, I had a terrible sinus infection and could not possibly breathe through my nose. So this MRI doc was so mean and cold and unhelpful (there's a video of her on her site that says it all, like when she states that IVs are painless. Really, c'mere, lemme stick ya bitch... ) No one had told me I could bring my own music, and she thinks this crappy new James Taylor CD is great for the MRI- calming. On what planet? Anyway... as she's adjusting my position she puts the cushion my face lies in right in my mouth. Remember, I can't breathe through my nose. They ask if I am ready and I lift my head to say NO and they start yelling at me because they started the machine already and wont stop and they're screaming at me not to move and I am trying to breathe through my asshole while listening to crappy James Taylor for 45 minutes with the machine pounding and terrified about cancer ....
This was worse than my radiation burn nightmare, but they're close on the horror scale because neither had to be.
The MRI bitch wrote on my report that she was unable to get a clear MRI because I was uncooperative.
I had to get another MRI, I don't know if it was just to replace this unclear one or for some other reason, these were the days before I took control of my own care, but this time I had 4 excellent doctors direct me on how to dose myself to become a potato, and one was my ENT who figured out how to clear my nose with the kind of drugs that wouldn't wreck the MRI.
I KNOW I got 2 frown lines on my nose from this whacko MRI bitch.
So today when my radiologist mentioned that I would be getting another MRI in June -that's my schedule so far, mammo and US JUST the bad boob today (which my ONC thought was weird), then mammo + US both in January [lotta mammo going on] then MRI in June- I made a casual reference to how I know what to do this time at the MRI and I forget how it came out that the MRI bitch actually works FOR my radiologist. Oh reeeeeeealllly? So I told my radiologist what happened and she said she was going to have a talk with that MRI bitch... because that is just not right. muahahahahahahahahahahaha!
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Another bit and boob trying to catch up on all the posts I missed (I am back on page 151) Today I met up with 2 BC org gals from the Hair Thread.
I don't know if I mentioned it but I have been working with my colorist (he taught colorists how to do color at Bumble and Bumble for years) on working on chemo hair color. Like when to start, and why does it sometimes not take the color and end up looking "muddy" and other complaints from the chemo gals growing out. Last week we had Lbrewer, and she happened to be back in town today for business, and Mom Of Boys was in with some friends from Texas. I was supposed to be there at 3pm but between my appointments running long and all the Xanax and not eating all day, I was about an hour late. But its just amazing how much fun it is to meet up with BC org pals. And I got them to do the secret handshake- although they thought I was completely out of my mind (they're right of course) and we took pics... so NoCal girls, you bettah be taking some pics of holding your boobs or each other's boobs or where the boob might be if there was a boob, and yes i will post pics but still not really awake at this point and so far behind on everything...
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Carol, I take 600mg of calcium with 400iu of Vit D...just my grocery store brand. I take 2-3 per day. Some gals on my yahoo group take 50,000IU.....WTH? I eagerly await my results to see if my levels increase or not.
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Rachel--LOL as usual with you. The James Taylor thing cracked me up (although I like him!)--and the MRI b****. Maybe she is friends with the Wii Fit b*****...
I have to ask my surgeon when I see him next month about whether to US the problem area on the bad boob or whether to get an MRI again--haven't had one since before surgery and am nervous that the mammo won't find it since it didn't the first time. Dense breast tissue, cysts, you name it--it's the "bad boob"...although sometimes I call it the rogue boob...
Kari--sweety pie happy face????? I love that--we're going to call you SPHF... ha!
makes me think of that song "sugar pie honey bunch"...! Can't wait to see you all in Nov at "Leggy's place".Carol--I have been taking it in the morning from the beginning--still don't have SEs so don't know if I am a good one to ask but I don't have a problem with it...
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j414- I asked my ONC about the broccoli sprout thing and it was first he'd heard, so he asked me for the info. Aside from the links you and I already posted, is there anything else? I also remember growing my own sprouts in college, its fun.
helena- I know NOTHING about the nipple thing, thank you for the description, I only wish it was easier on you. Kinda nice to know there's a lot of feeling in the foobs, yes? LOve the image of the foam pads with the holes in them. Oy!
helena- it's rough being the kind of person who says what they mean and means what they say and follows through when most of the rest of the world just says whatever they want in the moment and then does something else. all I can say is that when we get together, that wont happen. Some people are just like that.
helena- the idea of more of a fill does sound like a good possible solution, assuming the squeaking doesn't stop on its own or from the counterweight nipples... Aw jeez if I knew you'd be sitting around watching DVDs I'd send you some- do they play US DVDs in Oz or is it copyright region protected?
Diane- yes tonight DS was crying like a maniac, unusual for him, and would not stop. No fever, nothing seemed to be wrong. Finally I put on DUMBO and held him. He stopped crying and I got to hold my son sitting still for quite a while. Fun for me.
I am so lucky and honored to have this boy and this chance to be his mommy. Night terrors are just so sad for the kiddie 
Helena, if its Mum not Mom is it Mummy not Mommy? Yeah I am happy you got the comedies instead... I always say, I live in NYC, if i want to see something scary I can look out the window, if I want drama I can go visit my family... I want something from a movie I can't get in real life... a couple good laughs, the guy gets the girl, the bad guy ends up in a gorilla suit and all the ends neatly tied up in an hour and a half.
Woohoo making it to page 153...
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Boy, I echo what several people have said about this being a wordy bunch. I can't keep up. We've been very busy period at work and I am snowed under. So I just skimmed everything and got an idea of what is going on.
In the discussion of broccolli sprouts, someone asked about kale. I don't remember who, but I do love kale. It is wonderful sauteed with olive oil and garlic. I also like it in soups and even raw, if young and tender.
I forgot to take my tamoxifen last night. Fell asleep on the couch . . .So I'd better remember tonight.
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Helena--I read about your disappointment regarding your sister. I guess it's stating the obvious, but I will say it anyway: she probably stayed away because she was trying to protect herself from sadness. And when you let someone else know how they impact you, they often don't like being held accountable, which is probably what "upset" her. That having been said, is it possible that increased honesty between the two of you can contribute to you becoming closer? I noticed also that you didn't apologize; hooray for you! You were assertive, not mean-spirited; maybe it will help her to take your feelings more seriously. "What do you do?" Keep sticking up for yourself and show as much compassion to yourself as you do others! And here's hoping you will heal well as you rest and dream about running....
Rachel--I was wondering about when you were going to start or had started the Tamox, so now we know. You made the leap! I bet you will have an interesting theory about side effects....
Kari--I made the decision for no recon and I have not regretted it. I think that you received some good advice about not pressuring yourself to make a decision, and I think of it this way: if the decision to do recon is the right one for you, you will know it and decide when the time is right for you. I have a rather complicated medical history and I was just not thrilled about the prospect of more surgery, plus I have a "weak" lower back and I wanted to keep as much of myself intact as possible. I realize that others make the recon decision and do well, but I just didn't feel right taking the risks.
I am in my sixth week of tamox now, and I am still surviving. I have had some interesting "vagina monologues" and I never know what to expect next! I have some days when I feel a little more impatient and irritable, but, hey, I was like that before. I am hopeful that I will not turn into the Arimidex bitch that tortured the living hell out of my dear husband a couple of years ago. I remain hopeful that Tamox will have a positive influence on my quantity of life while I continue to find satisfying ways to add quality to my life!
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RACHEL YEAH!!!!!!!!!!!!!!!!!!!!!!!!! FOR CLEAR RESULTS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Helena I think I missed something. I do remember you saying you had feeling in your nips, I thought they just tattooed new ones. Stupid question coming up,where do they get the skin for a graph? If you don't want to answer, just tell me to shut up. I am curious, because mast and recon my be in future. Of course none of that is a guarantee that the cancer will not return.
NoCali Girls, not sure if I can make in Nov. but I still plan on coming out to cali to see auntie and sister, just have to coordinate it with regualarly scheduled days off, esp. since I only work 187 days a year. And last year I used all my time plus my saved time and took days w/o pay.
I have seen where someone on one of the threads, mentioned "trigger" finger, but what about "trigger"toe????? I get a severe cramp in my big toe(either) foot and it hurts like the dickens. Unlike a charlie horse,that I can massage away, my toe just stays completely erect(yes Rachel like a penis)for a few minutes and I can not massage away the pain. (Now it sounds like i am talking about something else, or maybe I am the only one with a dirty mind)
My son's school had open house, and I was really having a major hotflash!!!!! Then I started talking to a lday going thru perimenopause and many of he symptoms were the same as our tmaox se. Sleeplessness, hotflahes, etc.
Yes, we are a chatty bunch, I just wish I could log in at work to check on the site, but I am sure the the word "breast" would be blocked from an elementary school's computer, even if I was on my lunch break!
Tues, I have to go get my sons meds filled. Unfortunately, since it is a C2 for his ADHD, the dr can not call it in and they can not write the rx w/refills, so I have to wait for rph to fill it. At least I can do a little shopping while I wait, I need milk, snack for dd's daycare and pop and cups for son to take to school for Spanish fiesta on FRiday. Never ending.
Have a great day Helena and Ainm.
Good night to all.
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Diane- 3 weeks without lifting the kid- now that's rough. How old? How much does she weigh? I snuck in a couple lifts after the lumpectomy, but that's no where near as serious. Let the DH help. As single mom, I had no real choice other than to hire a full time nanny, but again, I had minor minor surgery. Now I am thinking about visiting my Dad and staying over and i know he and the kid would have such fun together - while I could SLEEP IN- except Dad isn't supposed to lift more than 20 pounds. Can't have my boy giving my Dad a hernia. I was trying to figure out some kind of step arrangement, where my son could walk up to the high chair, or eat on the floor. No way out of the crib lifting, and I don't think they have made a crib with a trap door!!!!!
Oh and Diane, I have a friend here in NYC whose daughter is somewhere in VA and having a really really tough time. Young, either 20s or early 30s, at least one kid, Stage II or III, did chemo, and fighting husband in a divorce where he claims her BC makes her unfit mother. She's lost a couple jobs due to chemo. My friend who is social worker/health insurance person who also has BC (early 30s, Stage III, current chemo) was trying to help her but it soudns like there are not as many resources in VA as NY. Is that possible? It's hard to help long distance. I know VA is a big state, you guys could be very far away. Any idea what the story is in VA? In NYC evidently there is like a set law that you can't take a woman's kids from her just because she has BC and has trouble keeping job during chemo.
kari- I support your confidence in waiting until you feel comfortable with recon. I think that's perfectly valid. UNless there is some sort of window of opportunity you have to deal with in terms of the availability of recon options, but that doesn't seem to be the case. More than that, when you give them a little time, sometimes they come up with something mo'better. You have been through so much, I am all for you getting a break. Body needs some time to heal and adjust. of course I would support you if you decide to move forward now, or if you decide to go breastfree. That recon stuff is no cakewalk.
Oh yeah I had a yak with my radiologist about surgery after rads. I told her I liked my BS- who she recommended- very much even though I wish he had spelled out the issues with surgery after rads when I specifically asked him. Her first answer was that radiation could be administered with those mammosite beads, but that didn't make a lot of sense, as I dont think there's any re-radiation intended or allowed, and it doesn't answer even what happens with the incision to insert the beads- and beyond that, as far as I know those mammosite beads are still experimental and have some problems. But she did get the point when we talked recon.
helena- snore remedies... I think there are some like nasal strips you can use (i'd pinch his nose, but thats probably why I am not married) Damn, you need your sleep girl. Have you tried Xanax? Wonderful stuff!!!!
diane- I asked again about the metabolizer test for me and i have to review what we recorded but I think my onc felt like since we dont actually know how Tamox works, we can't exactly know if its not... the statistics remain the same. if i dont get hot flashes I might give it a whirl just to see, like Helena did. (eh, I should be so lucky!)
OK I obviously missed an avatar of Allie with her husband with soemthing in his mouth, and on this board, that could be ANYTHING....
Somehow I am missing stuff, like Allie's cyst?
Carrolyn- On finding the sprouts, you are a gardener for crying out loud, and sprouts are like the easist thing in the world to make happen. We used a big jar in college. Here's a google listing of DIY sprouts, I used the sproutpeople bags to make sprouts at Burning Man!
Carrolyn- a lot of the gals on this thread swear by taking the tamox at night, and some split it, but my ONC said first thing in the morning and that's when I take everything else, so I am starting with that. Oh and my other stuff is an antacid for my reflux, Bausch and Lomb AREDs which are supposed to help eyes, but supposed to take twice a day and I am too incompetnet for that, and iron plus now Tamox. I just sneak it in the pill minder and try to forget it.
More advice for sleeping, take the Xanax and if your hubby snores, stick the Tamox up each of his nostrils. Yep, that's probably why I am not married... oh and as I am told, I snore.
Terri- gorgeous pic! Oh I think men always accuse us of being bitchy. But hey... probably again why i am not married...
Leggy- yeah I didn't want to say that to make you worry but the spotting is the clue if there is something going on with Tamox in your uterus... but it also can be nothing, just the general fun fun fun of being a woman of a certain age... Glad you will see OB Gyn Soon
mallme- high five! yeah, get to the gyno, fun fun fun...
on the sweetie pie/devil thing everyone is talking about, being bitchy and all that, it just reminds me of the PMS bitchyrage, you know the one that gets us off murder charges, right? It would make sense with my little unresearched theory about Tamox and our reproductive systems. We start taking it and our reproductive systems fight back, trying to make the old kind of connections it used to but Tamox gets in the way, that's its job. So our reproductive systems- and let's face it, this is survival of the species stuff, our reproductive systems don't give up easily- start throwing everything in the house... rages, hot flashes, dischrages... then it says oh well, might as well just attend to the things it can control... just like we do
kari, natch I will report in with all results
and ya know, I am perfectly happy to have another excuse for having a bitch fit on someone... oh it's the Tamox... yeah... right... sure...
THANK YOU FOR THE WARM WELCOME TO THE TRAIN LADIES. Wow, nice interior here. Much better than sitting at the station watching the trains go by...
oh crap I thought i was done but this is only 153... on to 154
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Allie- hilarious!!!! The Wii Fit Bitch and the MRI bitch. I am sorely tempted to post the MRI bitch's video, but now that i have called her a bitch and all, and she's literally going to have my t*ts in a sling in a few months so.... I'll PM!!! HAHAHAHAHA Hey I like JT too, but its a recent album and much to namby pamby for MRI. 45 minutes, keep my mind occupied!!! Was it Mary who was talking about getting home to watch House? I LOVE House. And he had some fabulous blues on in one episode (if youleave closed captioning on often they have the song info) so I bought that some tiem ago and grabbed it for the next MRI. I used to be a DJ, I have a degree in Music Voice, and for me, there is nothing as appropriate as some real old time blues sung by an old time blues man for the MRI. The beauty and the pain in his voice, the magic of the guitar riffs- and I also noted that each song was about2 minutes and the whole CD was like 45 minutes total, so if I wanted to figure out how much time had elapsed, I could have counted songs, but every time I tried I got carried away. Which was, of course, the whole point.
Allie-Here's my pick for best MRI, PET/CT Scan, whatever you have to sit still for a long time and listen to music, thanks to House: Blind Willie McTell- Pig and Whistle Red
Allie- yeah my bad boob is the left, which is yours? Between both of us we have one set of good boobs...
lisa-e - eeech kale... bleh uck ptui. And another reason why I don't take Tamox at night (or at least hope that it keeps working for me durintg the day). I stink at night. I wake up and look around the house and can't imagine what pig left the dishes out, fell asleep fully clothed with contacts in, etc... oh right, that would be me. I can't even take the B&L second vitamin at night... so maybe my vision will only be half improved? One eye?
brenda- ROFL "vagina monologues"
OK mea culpa for being wordy, and I still have stories to tell but it was hard for me to keep my mouth shut for so long! Now... I will shut up! (for a while)
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Rachel, you crack me up....trying not to breathe thru your asshole during the MRI with the cushion stuffed in your mouth and your sinuses blocked. OMG I laughed!! I swear they need cameras to follow you, your life would make one entertaining reality show. So sweet about your boy and cuddling him during Dumbo....all it took was a softy with big ears to calm him down. Dumbo, not you Rach! haha SOOOO cool you are getting to meet other women from bco and teach them the secret handshake! Ok I better practice, oh wait...I don't have much to shake but I will try!! That colorist sounds awesome!
Allie, what a BEAUTIFUL Avatar girl! You will be the beauty queen of the group! heehee!! Did you not have chemo, cause your hair is long and pretty!! I really stare at hair these days!
Lisa-e, I know I asked if kale tasted good, I've never tried it, but maybe I will now, try sauteing it...ok I can do that.
Brenda, thank you so much for your kind words regarding recon. It meant a lot to me, believe me.
Mary, whenever you can make it out west, you be sure to let us know! No worries girl! Glad you made it thru the open house but that stinks, getting a H/F while there! How uncomfortable!!
Ok, since most of you are probably in bed by now, guess I will go watch TV in my room and try and get some sleep soon.
Diane, praying for no night terrors tonight and a good night's sleep for you!!
Hugs, handshakes, waves and side hugs to all!
Have a great day Ainm & Helena! And good night to the rest of you!
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Ok, Rachel you posted a couple times while I was typing....will read first then sign off....
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Ok, all caught up on your posts Rachel, and I must tell you I just adore you. You make me smile. Now get to bed, its late over there on your side of the continent!!!
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ok kari, me too, one more thing... the staring at hair thing, perfectly valid. when I met up with the two gals from the ahir thread today (and I still have to get over to the hair thread and report in, but tamoxigals I had to get to first) their friend looked at me in amazement because my hair grew in so fast- that is, until I explained that i didn't do chemo. It's like I am almost ashamed, but I am not, because I know that there but for the grace of g-d go I, and I have learned so much about what truly is involved in this business of losing hair for chemo, and for myself if I later need it and for my BC peers, I am going to do all possible to make it better for my chemo gal pals, and all chemo patients. Like today we were yakking about probably the most important thing in the salon, to make the chemo patient feel WELCOME. Being expected, treated with respect and caring, frankly we could have ended up with pink or green hair and it still would have been better than being left out of the beauty shop.
And when I asked about the Zometa infusions, after reading here others who do Zometa (Zometa thread I think) those gals pointed out that they are often "back in the chemo room" for their Zometa infusions. So I asked if that was where I'd be and I will. The woman I asked at Sloan thought I didn't want to be with the chemo patients but that is SO not it. I am perfectly happy to be there with the other cancer patients and would be trying of course to help but that same look, that staring at hair, that I didn't have to go through what they are, and I am only there once in like 3 months (I asked for short dose first) and then 6 months... so its not like they'd even get to know me. How will THEY feel about me parading in there with my hair and my good luck and my simple Zometa infusion? Well they said the rooms are separate and I'll bring my computer but I still wish there was some way I could be helpful to the people there. I sure wouldn't want them to jump to the same conclusion that this woman did- that I am some how different just because I was lucky... well lucky by cancer standards.
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Well, Rachel, our tastes differ because I really like kale. Sometimes when I am trying to increase y veggie intake, I saute some then push it over in the pan, break in a couple of eggs, cover it and let cook another few minutes and have that for breakfast. Very yummy,imo, of course :-).
I have to laugh about your description of falling alseep with you clothes on. I do that all the time, but I usually wake up long enough to take my dose of tamoxifen. I don't do well taking pills, period. No matter what time of day I take them, I tend to forget. With the tomoxifen, i've had the best luck keeping the bottle by my bed. I only miss once or twice a month, which is damn good for me.
I have trouble remembering to take my vitamin d and calcium. As I am supposed to take it with meals, 3 x day, that means bringing some to work with me. I count the pills out and forget to bring them with me. On weekends, I just forget. Did I mention I hate taking pills?
Kari, I am another one who didn't have reconstruction. One of my friends just had a bilateral mast & reconstruction (with the tissue for transplant coming from her thighs-don't remember the acronym). After seeing my friends results, I have been rethinking reconstruction. It was a 12 hour surgery and she looks pretty fragile to me, even after a week and a half. She does have cleavage, which is exciting, but I wonder if it is worth it? I can't imagine having such major surgery. I am reasonably happy going flat and wear foobies for major social occasions and when I want to wear something dressy rather than my normal pants and tee shirt. So I'll keep on rethinking the issue, but don't see myself having reconstruction. The advice you have been given, about making sure reconstruction is something you want before proceeding is good. There is no reason to rush into a decision.
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I'm SOOOO lost......lol. Too many pages to read.....
I'll come back when I'm not so sleepy.
Rachel.......glad you were clean and clear!!!
hugs to you all........I'll be baaaaack!!!!!
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oh gee I'm with you Genia I'm going to have to come back after my big sleep (dreaming about running - how beautiful Brendatrue - your whole post was awesome) which I am going to get tonite after I sacrifice 2 of my tamoxifen pills to cure the snoring ..LOL Rach...
ROFL sweet pie happy face.... what a laugh .. you go get him girl!!!
Out of the mouths of babes ... my DD just came in and I showed her all the new posts since this morning ... she said "wow you are popular' I said "well it's not ALL about me heheheh" and she said "you all really get along well on there".
She loves her mum (and yes it is mummy).Sleep tight elves and Diane I hope you sleep through.
love to you all
Helena
Allie - look at you you gorgeous thing.
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- HAPPY
- BIRTHDAY
- MARY!!!!!!!!!!!!!!!!!!!!!!!!!!
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