Bottle o Tamoxifen
Comments
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LittleRed,
I have had sleep issues since midway thru Rads, I too fought using the Ambien but my med onc explained to me that at 10mg it is a low dose and my body is fighting the tamox and the treatments and to take it for as long as I need it. I take it nightly I sleep well and feel rested. If I decide I want a few glasses of wine or a few beers I do not take it but I do not sleep either. Figured i will take it a few months and then try to get off. Don't know if this helps but we know what you are going thru. I take my tamox at night I have mild HF during the day but with the Ambien very few at night, no Ambien Night sweats go figure, or I have then and don't notice them.
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What's the deal with Ambien? Other than just not wanting to take more pills, what's wrong with Ambien?
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Meg- believe it or no, my reasons are the same and my ONC is awesome- and the facility is none other than Sloan Kettering (not the MRI, that's a private practice). Its the administrative people- and I include the techs who take your blood, because they obviously consider themselves administrative, not "caregivers" cause they couldnt give a shit. Obviously. My ONC's phone person is a certifiable pig of a woman, who MAILED me my appointment a month after she made it. I know because I can check online for appts.
and I am with you on the pink thing too. Again, its in my fave book, 5 Lessons I DIDNT learn from Breast Cancer, the pinkapalooza thing. (I even saw some promotion at Bloomies I think it was with Cancer Vixen, if anyone read her book). But on the subway today, I was carrying my son on my back and really ticked off all these able-bodied people without even packages crammed into us on the accessibility elevators in the subway, instead of taking the stairs. One was a youngish girl, I say meaning like in her 20s. I ended up sitting across from her on the train, and noticed she was wearing a big ACS pin. So I asked her about it. Turns out she just walked a 5K in Central Park, some sort of walkathon for ACS. I thanked her and told her I have cancer. I asked her why she walked, and she started to tell me about her co-worker who has SFBC, how everyone in her office was walking for the co-worker. She didn't know the details, just that it was SFBC and that it had come back in her throat and that she may have to lose a breast. Then she went on to list cousins and so many relatives I couldn't keep track, including a 10 year old with lymphoma.
I thanked her again.
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Hi Ladies....
Started my Tamox on Friday night, and so far so good. Still having the sleep issues, haven't slept thru the night in months, but so far no SE from the Tamox.
Have a great week everyone!
Linda
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Dear Rachel_BC & carollynn7:
I will ask about the Effexor and if it might be helpful. I have another 3 weeks of rads to go if my PS sees me this week and doesn't recommend my skin have a rest - if he thinks I need to, he'll ask my rad onc to hold off for a few for the skin's sake.
I've just been taking so much stuff, I was hoping I would adjust and wouldn't need the Ambien. I took it during the later part of my chemo, when I was, frankly in such an awful state, I had no choice but to load up on the Ativan, Lexapro, Ambien, and of course everything else they wanted me to take. I was a mess - felt so bad, was so sick, and of course I was jacked up on so much stuff, it was scary to me. But I recognize I can't keep going without rest. That won't help physically or emotionally. Maybe I'll try taking it tonight...
It has been a marathon, Rachel - Thanks for your encouragement...
Be good to you -
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I just adore PattyB Part Deux's "nothing happening" posts
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Today, was the best day I've had since SFBC!!!!!! Hate to be all upbeat and all, but really lovely day. Went to Rutherford Grill, one of my favorite local restaurants, with my ex. We had a really good lunch, flatiron steak with heirloom tomatoes, sea bass with mashed potatoes, oh started off with spinach tip/chips, and salsa...Really good service, all around. We split everything so it was Surf and Turf. I'm stuffed. Then went to Lake Hennessey to look at the level after the rain we had last Tues. It's so beautiful. That's where I used to kayak, before SFBC, and it gave me a buss, just being out there again. I stayed away from the lake since DX, couldn't go there, but now I feel like maybe soon, I'll be able to get my 65lb kayak, up on top of my truck, and get it off by myself. My surgeon's nurse told me to wait till next year, but I'm hoping to get out there in Dec.
Then when I got home I gave Wolfie a haircut, and went for a walk, on a country road. The sun was getting low, and this road, has grape vines on both sides of the road with a few cute houses. The vines are turning colors, it was about 65 degree's with a slight breeze. The sun was shining on Mt. St Helena, and the Palisades. Truly beautiful day. Magic. I feel like I'm getting stronger everyday. I started rads. one year ago, very shortly after finishing chemo. It takes awhile feel anything but tired after that. So I don't think my fatique is all TX.
Hey Rachel, about the nurse IV thing, there's new research saying it doesn't matter which arm isn't there? Don't get me wrong, I understand you getting pissed, but at least you look healthy, and have such beautiful hair. They take one look at me, and ask which arm, even at the drive through Que at the hospital, for a flu shot. People say I don't look like a cancer patient, but my hair is so......
I've taken Ambien since chemo.when one of the drugs, I had to take after treatments had me up all night, reading with a flashlight, like when I was a little girl. I've always had trouble sleeping, but as soon as the nurses found out I wasn't sleeping, they got the doctor right away, and gave me a prescription. Sleep is so important, for healing, and I've been on it since. I have to be up early for work 7:30am and I've got to sleep and Ambien works for me.
Carollynn, I'm glad you had a nice trip, but I'm really glad your back! Missed you.
Can't wait for CA girls to meet up. Two other friends both cancer girls, will be there as well. Had a thought today, come early and we can walk around the grounds.
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Leggy- what a beautiful description! I could just picture it. Can't wait to come up--let us know what time and exactly where when we get closer. Thanks again for setting up!
Meg--thanks for the great story! I think there are a lot of people who have been really supportive of cancer as a whole--you know that a lot people are touched by it b/c we know how many people get it...
I have a few friends who have trouble sleeping and have heard Ambien works well. Sleep well ladies!!
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I'm beginning to think Leggy works at Neverland.
:::snicker:::
fabulous write up, yeah I have been having some really great days too
Kinda unreal.on the LE thing, i read up on it (surprise!) and what I saw said that yes, the results from the first whatever years are really good, for SNB not having LE but there's also a note saying that the later effects are not known. And... I have two arms, right? So why not use the other one? Now in a way I am partially at fault because I am so doped up when I go that its hard to remember everything -so I bring a list, and now I will add that to the list. I aint THAT doped up, and remember, 15 years with the Rolling Stones... good training for a lot of this shit.
oh and I did remember to ask this blood taking tech if they were doing a Vit D level test. She looked at my file, said no, it would have to be ordered. I told her to call my ONC. He ordered the test. Then when the results came in, I posted here, there was a note on my report that said the VitD test was not done because it was a duplicate request. I asked my ONC and he found the test.
administrative incompetence.
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Happy Monday Morning!!!!!!
We have a new associate starting today, that should alleviate a bit of stress!!!!!
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Chelev,
I also have the dizziness. When I stand up, sometimes I actually have to hold on, it feels like I may black out then it passes. Iit is only when I stand up, doesn't matter if it is from a sitting position or if I am lying down. I blame it on the tamox also. Never had it before, my blood pressure is fine so must be tamox.
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Rachel--15 years???! It's a good thing you aren't having to go with Keith to get blood transfusions...or maybe you did and we just haven't gotten to that story yet--hee hee!
I hear you on the administrative issues--I am in the midst of chasing down some things too. I'm annoyed b/c they won't give me a flu shot when I am going to be down there for another apt so now I have to make a separate trip to the PCP. (They only give them if you are on chemo.) Seeing the surgeon tomorrow and my onc next month when I'll get the re-test on the blood work. We'll see where the vit D is. I have to see if the surgeon will suggest an ultrasound or MRI--not feeling to secure with the mammo since it didn't catch it the first time (dense breasts)...
Happy Mon all!
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Allie- I am on the flu shot merry go round too... and then there's the whole swine flu thing. I just did the "school tour" for the nursery school application (I LOVE IT!) and Friday we have the playgroup, then Tuesday I'm interviewed by parents from the school. I am such a germophobe, I know schools are where you get the flus... and the other parents were all talking about how all their kids are sick with some high fever thing that's "going around". So... my kid had his flu shot (did him, forgot myself, doh! btw- I should get the flu shot in the other arm too, right?) but not the Swine Flu shot, if I don't get him and myself shot up before these interviews and meetings, will we get sick? Worse, will he get Swine Flu? Our pediatrician advised against the Swine Flu vaccination, but my PCP is for it for the kid. If either of us gets shots before these interviews, and we get a reaction (mostly him) then they wont get to see us in our normal selves. Augh augh augh augh augh. I am trying to get the whole process over asap because I have the cookie shipment and all parts have to be done by November 13 and my court case begins jury selection on November 5, and I haven't got any weird Tamox SEs yet, so the sooner the better methinks to get interviewed. I prefer not having to explain HF during nursery school interviews... fun fun fun.
We had a joke on the tour - if a mosquito bites Keith Richards, the mosquito dies. So we were on this train from Munich to Berlin- this was an amazing train ride, a private train, it was wild and from the 30s, really amazing... said to have been Hitler's train... anyway... everyone was hanging out in the bar car (surprise) when the train lurched and the make up gal's cigarette burned Keith's arm. This was big horror, I mean, the whole tour requires that the Stones be able to go on stage and perform, everyone's job depends on Keith (and all the Stones). As all the blood drained from her face and she was apologizing profusely, Keith reassured her with his charming accent "Darling, do you think I'd still be alive if I could still feel pain?".
My mammo doc does both mammo and ultrasound usually- up until DX. I was so stoned at that check up I can't tell you if she did the US as well as the mammo, just I remember she only did the bad boob. My ONC did remark that if my mammo doc does a mammo again in January as she said, that's a lot of mammo. Then its MRI 3 months later I think she said. I get the results instantly.
Mary- its about time you got some relief!
Oh and I got a letter today, my colonoscopy doc is going out of business as of Jan 1. Mebbe I will try to schedule that early.
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GREAT NEWS!!!! My onc nurse emailed me that the BRCA Tests are NEGATIVE!!
I didn't know how much I was stressed over this until she told me and I started crying on the phone to my husband. What a relief - one less thing to worry about!!
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YAHOO chelev!
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chelev- Get Down with your bad self! Yay!
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Great News Chelev!!!!!!!!!
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Hey hey Helena where the heck are ya?
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Yeah Chelev!
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Yay Chelev!
Leggy, awesome write up girl!!! Love the visual! I am really looking forward to the 'meet up'...so Rachel will we ALL have to do the secret handshake photo? haha
My 'warm' flashes have gotten much better with the cooler weather. Noticed Friday/Sat when it was 85 degrees I kept having them...but today notta one!!
Had lunch with a bc sister. Had her 2nd period since last Oct. and she said it was soooo heavy she couldn't leave the house and now she has a cyst. She was unaware that Tamox could cause this?? and can it also cause heavier bleeding?? I told her I would ask you girls. Her onc ordered an ovarian tumor marker test for her also. Oh...she also said she wrote her Gyn about the heavy bleeding and she prescribed progesterone tablets. My friend was like 'hell no...I'm P/R pos and I ain't taking those..."
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Meg: "I lost it." My heart went kaplumb when I read that. I understand so well what that is like. Somtimes I think I am so well-defended that it takes the "little things sliding under the radar" to catch me in a vulnerable moment, which trust me is okay. I am human, after all.
Ambien makes me cuckoo; when I have had an intense day all I need is .25mg of Ativan (can you believe it?), and I sleep for about 8 hours, then wake up feeling refreshed. I will probably be wacky when I near the end of the Rx....
Chelev &others--Yeah, I have recurrent dizziness, too--just enough to keep me a little off guard and not enough to make me worry too much about it. It seems that the side effects ebb and flow: vag secretions up, up, up, then down; headaches up, up, up, then down; ringing in the ears, up, up, up, a little down and a little more tolerable. Now, if only my eyebrows and eyelashes will start another growth spurt....And chelev--CONGRATS on the BRCA testing! What a tremendous relief for you! Sometimes I also don't realize how intense the waiting for test results makes me until I get the news, then W-H-O-O-S-H I feel so relieved and grateful. Rachel--I'm glad you haven't had any weird SEs "yet"--perhaps you won't! Kari--I'm still flashing and having the slow burns, plus it seems like I often have a really cool feeling on the top of my head unless I am flashing or burning; go figure!
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WAIT A MINUTE!!!! RRRRRAAAACCCCHHHHEEEEELLLL, did I miss a good story, or did my chemo. brain click in, on the Rolling Stones tour? Do tell us the story again, PLEASE!!!! I was a groupie, in my younger days. At college I was on Concert Committee. and we even had Elvis Costello, what a show that was! My job in 83 my senior year, was to call the music agents, and see who was avail. and after we all voted on the acts, I booked the show. The agents were great fun, especially the New Yorkers.
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Sorry, I got carried away, Kari, we should take a few pictures and post them and see, if anyone can quess where we are...Hummm. You'll have to post the pic's though, since I can't figure out how to do that. Neverland is not it.
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So much to catch up on!
Other than taking ambien, what do you all do about insomnia. I also have a lot of trouble sleeping and my doctors don't want to proscribe ambien. Most of the time I can muddle through, but some nights I really would like to be able to take something and go to sleep.
Dh and I just got back from our trip to Death Valley. We had a great time and hiked a lot despite the heat.0 -
Lisa-e - I take Ativan (0.5 mg) to sleep. Works for me!
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Chelev--YAYYYYYYY!!!! So happy for you (and your ovaries if you still have them, b/c that means you get to keep them!)
Big, happy relief!Leggy--I'm glad it's not Neverland!
Kari and anyone else who is coming--can't wait to meet you live and in person...again to all the lovely ladies who aren't making the trek to No Cal--we wish we were seeing you too!!!
Crazy rain storms here today which is unusual for us in Oct--supposed to be our indian summer!! Got drenched doing errands and had to put all my clothes in the dryer and put them back on to go meet a friend downtown to visit some restaurants where we might host a friend's 50th b-day...
Rachel--love the Keith quote.
I had a good friend in high school who was obsessed with the Stones--made me come over the instant she got a new album (yes it was an album in those days...!) 0 -
don't know what those <address> are doing in my post...
that's what I get for lurking here and never posting??? lol
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Hi, tamoxi-sisters - hope everyone is having a great Tuesday. Warming up already in Florida, we're bummed - we thought the 40's & 50's on Sunday night and the 72 degree weather all day was going to stay but it is already back on with the air conditioning last night and ugh, warming up again!
I've gotten a link to an article that was done as part of the LGFB interviews I did, I hope this works: http://www.reuters.com/article/healthNews/idUSTRE59C5DW20091013?feedType=RSS&feedName=healthNews&pageNumber=1&virtualBrandChannel=11617
It was done by Reuters, which is an international news agency, mostly geared towards business, but it's a good article, anyway.
I hear the Today Show segment will air on Friday morning around the 10:30 time frame. I'm doing tests on the VCR this week to make sure it actually records!
Reported my se's to my onc nurse, who said everything that is happening is normal, though she was a little alarmed about the random dizziness, until I told her that some of my tamox sisters were also having it happen. I reassured her I am getting enough fluids, eating a banana a day for the potassium, etc.
Have a great day, ladies. Oh, by the way, the mojo . . . is . . . definitely . . . back!!! Maybe losing some weight has helped my self esteem, but yay. If that's a tamox se, I'll definitely keep it.
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Great article!
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Great article, chelev!
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