Bottle o Tamoxifen
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Hi Rachel, nice of you to ask about the mystery x ray. No word yet. I emailed the doctor and he said, he didn't understand what was taking so long, since generally it only takes 2-3 days for a report. So I emailed him again, today. Maybe the radiologist has chemo. brain, and forgot all about me.
Hope everyone is doing better than me, today, I'm a little in the dumps. Can't blame it on PMS, since I'm over that, oh yeah Tamoxifen Blues, that''s it yeah.
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Laurie, well that makes sense, even if it does sucketh more mightily. Your sleep is disturbed by the hot flashes which are caused by the Tamoxifen. Sucketh mightily. I am sure you do not want to hear about how the hot flashes mean the Tamoxifen is working, and your recurrence rate is lower... because.. not sleeping sucketh mightily
All I can offer there in my limited knowledge is that Effexor seems to work for everyone who tries it to reduce the hot flashes and that most people on Tamoxifen say that the effects wear off after some months... and a lot of people here have said that deep breathing helps make the hot flashes go away and deep breathing also is a good way to get back to sleep (that from my pre-BC sleep problems). I know I am very much interested in seeing you get some sleep and beating this SE for completely selfish reasons- I expect the same for myself. Leggy I think the frikin unreasonable waiting on the important x rays over a whole weekend just to be put off again by careless people is enough reason in and of itself to make you blue. And it pisses me off. (and yeah, I don't want it to be the Tamoxifen). I was kinda stupid to ask you about it, but I remembered that you got stuck over the weekend waiting. I can't even remember which kind of X ray it was and what it was for, only that it was @#@(#! important. I know my BS was always warning me that he had no control over how long it takes to get certain test results back, sounded like he was frustrated as well. Also my high school pal who I didn't realize became THE SHIT when it comes to cancer science- she's a freaking super scientest working on the whole gene testing thing at Stanford- she explained to me the kinds of things that make gene test results take a long tiem sometimes. Like they cut back on staff and have to send things out to be read by other people and there's a backlog, purely administrative bullshit. Also sometimes they are not sure what they are looking at and they call in a colleague to get another opinion. So that takes time to get the other opinion and their backlog... Maybe its the same thing with X rays. But I am still going to say you should keep pressing your doc for the answers daily and tell him that you are not willing to let it go over another weekend. At one point I called the head of the Pathology Department to bitch (in the nicest way of course) the Pathology Department people are not used to patients calling... fuck 'em, what are they going to do, give you a bad test result because you called them? They were really nice to me and agreed that it was taking too long and she made some calls and got back to me and got the results... (but she couldn't tell me, i still had to get it from the ONC, but at least I got the test to the ONC.) I like that your doc was honest, and confirmed the 2-3 days. You have been waiting over a week, right? You have a right to know what the hell is going on.
And its making you blue. That's just not fair.
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Thanks, for the support Rachel, it's been over two weeks, just for hip pain (bursitis) , but the doc had to say "it's probably not cancer related, but" ...pain in the bum, he is. Trouble is I'm on my feet, all day for work, and now it's throwing me off, and everything hurts, even my ankle(previous torn ligaments, which ruined my pro basketball career). Not really, but they did call me Wilt the Stilt.
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Leggy sorry to read that you are having a bad day - hugs.
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Thanks for the welcome :-)
I am starting Tamox doing the 10mg in the AM and 10mg in the PM, as several of you on this board have suggested. I asked my onc what he thought about that and said "happy to let you try that if you prefer" and he prescribed 10mg tablets.
I started getting hot flashes during chemo (I'm 44, so was premenopausal but chemo seems to have stopped my periods), and just got a "Chillow"--a pillow that you pour water into and after it absorbs, it just stays cool. I keep it next to my regular pillow so I can roll over on to it if I get too hot. I really hate heat (I live in New Hampshire and even here it is too hot for me in August), so I'm not looking forward to several years of hot flashes on Tamox.
Helena--my exchange is going well so far --I have the Mentor CPGs and not sure what I think of them. I've seen your comments on the exchange thread - have you been able to start running again? I"m almost at 4 weeks and ready to try.
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Hello ladies, I have been on Tamoxifen since January. Same s/e as everyone else. Hot flashes (vitiman E isn't helping), night/day sweats, joint pain and insomnia. I have also developed trigger thumbs. Cortisone shots helped the right thumb but not the left. I also get fatigued very easily. Is that from the Tamox??? It couldn't still be from the chemo, could it. My last treatment was November 7th.
I haven't had a period since my first chemo treatment last September. I still get phantom cramps thought which is really weird. I spend a couple of days a month checking to make sure it hasn't returned. Anyone else have phantom cramping???
If I'm welcome I would love to be Facebook friends.
Karen
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Ainm - I, like you, had chemo induced hot flashes. The lowest dose of Effexor did help with them, I had less and they were not intense, just little waves. Since starting Tamox they have gotten worse again, not as bad, but my onc did tell me I may need to up the dose of Effexor. I don't really want to do that, because the Effexor has given me some spacey SE's and afraid the higher dose would make that worse. My feet hurt too especially right out of bed.
Rachel - I, like Helena, was going the suggest sending a card. I received so many cards since my DX December (Merry Christmas & Happy New Year to me). It really surprised me each time I received one and I enjoyed reading them. I have decided to make a better effort, and send cards more often (something I've never been great at doing).
Karen - No phantom cramping (I've had 2 periods since January, last was after 2nd chemo treatment). I tire easily too.
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Up every 2 hours last night having to pee and then hot flashes! AARRGGHH!!!!!!!!!!!
Karen, I will be your facebook friend! PM me!!
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Morning everyone,
Aoandrews - So glad the exchange has gone well. I saw my plastic surgeon yesterday and have the all clear to get back into everything, including running - it has been 6 weeks since my exchange. But of course I had a crappy nite sleep last nite so won't run now till tomorrow - have to work today. I wasn't able to see my PS earlier as she was overseas but I was told right from the beginning not to do any running till 6 weeks (even though I thought I was ready) - can you give yours a call to check first? And I hope sooooo much the 10mg split helps and keeps those hot flashes at bay.
Kari I had a bad nite too honey. Sux doesn't it - just wrecks everything!!!!!!!!!!!!!!!!
Leggy - good luck with your x-ray results and I hope you had a better day my long legged friend.
Laurie - I was given a script for Effexor but that was for depression (haven't had to take thank heavens) but as Rachel mentioned it is the one prescribed for hot flashes. Hope you have had a few nites sleep.
Karen - I will PM you for Facebook.
big hugs
Helena
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Karen I got phantom cramps all the time in the beginning, had my last periods in Feb and March after 6 months of nothing since August. But after the one in March, no more phantom PMS. So I'm wondering, does this mean that I am truly completely menopausal now? Only time will tell.
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If this helps, rgiuff, my Onc. said I had to have one year without periods, to be considered menopausal. I had one period last year in April before my first surgery, out of fear. Before that I went 6 months without a period, so he dx tamoxifen. Period free now, but he still thinks tamoxifen is the only thing to keep me cancer free, for the next three years....His words, not mine.
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Just a quick note, I did not read all the post yet, as it hurts to sit too long. I am finally home. They kept me overnight, just for observation since I live so far away. I did not get any sleep, my roommate had to have her blood sugar checked every hour. I am off for now.
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Feel better Mary, get some rest.
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Ainm,
Oh my...when did you start your Tamoxifen and for how long were you taking it when you started waking up in the middle of the night from hot flashes?! :-O
I just started doing that as of the night before last! I've been having too many hot flashes to count since around my second chemo, but most of them were all during the day and in the evenings before going to bed for the night. I still have 'em in the days and evenings, but I thought the wake up in the middle of the night ones had stopped...but the last two consecutive nights, er, well, I can't sleep through the night and I got up way too early 4-something and 5-something) yesterday morning and this morning too. Then I took naps during the day because I couldn't stay awake, and the mental fog was even worse than plain old straight-up chemo brain!
Or do you think mine could be still from the chemo? I was actually thinking that until you mentioned hot flashes in the middle of the night and doubted it was still the chemo...I just started my Tamoxifen last Friday and am still fresh out from chemo (barely 2 weeks out yet).
LOL on eating LOTS of healthy foods. Cool, though: maybe all you have to do is just reduce your portions and not eat ANY junk food/sweets at ALL for awhile, and after you lose weight keep that to a minimum?
Rachel, what's FB?
Gotta go to bed. I hope I sleep through the whole night and don't get up till 7-8!
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Hi KarenP! I'm late and pooped from a day of legal BS, so I am too fried to say anything more than that... I haven't checked my PMs but if you sent me, I will FB you
Damn kari and Helena, that news about being woken up all night sucks.
Mary- oh crap, you made it sound on FB like you were enjoying a night of undisturbed sleep in the hospital vs home with the kids. Now you didn't get sleep anyway? Crap! But so happy to hear from you, and very sorry about your side hurting
Lena- FB = Facebook
Another weird thing, my Dad's ma's name was Lena, I was supposed to be named Lena in her honor, but my Mom didn't like the name (I love it) so she named me Laurie, but I prefer my middle name, Rachel. Every time you guys post or someone answers you, I'm like the Bacos dog turning my head like its me.
OOOOOOooookkkkkkkakaaaaaaaayyyyyy I am losing it here... I should shut up.
I will check my PMs and FB everybody I can, and then I will go after all the other letters in the alphabet
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OK, so I had some tests done last week .. easy I always win these tests... my Onc has just called and my CA125 (cancer marker test) came back at 52 (normal range 34). Freak out just a little. I had my periods when I did the blood test. He seems to think that this has spiked the result...wanted me to do another one tomorrow but I work so will do it Monday. Anyone heard or have a high score like this without ovaries involved? PLeeeeaaassee. No way that this is going to happen. Anyone know which thread might know about this stuff.
oh dear, bl*#dy hell.
Helena
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Helena,
This whole thing is such a rollercoaster...just when you think that it is going okay along comes another dip.
Try not to think about it until Monday (hard I know) but we must take each day at a time and try to get every bit from each day.
If you need some support or a chat just pm me and we will arrange something.
Big, big, big Hugs
Viv
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Hello, to all. Let be tell you, EFFEXOR works wonderful. I did not have a single hotflash, and I was waiting, since I just went into immediate surgucal menopause. Actually, I was quite surprised, I actually felt a sense of relief.
Welcome to all the Newbies, enjoy the ride!!!!!
Just a quick recap for the newbies. I started Tamox on March 12, about one week later, I started Effexor, mainly for mood swings and night sweats. I recently had my ovaries removed(BRCA2+), to reduce risk if Ovarian Cancer. I really think that the Effexor has helped make the transition easier.
Have good day!!!!!
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Helena--bloody h*ll is right! I'm glad they are doing a re-test but certainly isn't good for the nerves! Sending you good thoughts until you get the results back...
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Lena - I had chemo induced hot flashes, probably started after 2nd or 3rd treatment. Was put on Effexor 37.5 which really helped almost went to none, little waves not as intense. Last chemo 5/13 (you will probably have SE's for a least 3 weeks). Started Tamox on 7/15 almost 2 months after last chemo. 1 - 2 weeks after starting Tamox my hot flashes seem to have increased. I have Chemopause and Tamoxopause. I will probably live with the hot flashes because they Effexor does seem to make me a bit loopy.
Mary - many well wishes for your recovery!
All - Have a great upcoming weekend!
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Helena, bloody friggin h*ll!!!!!!!!!!!!!!!!!! Try and remain calm until your new test results come back! We're with you girl! lots of hugs xoxo
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Viv, Kari, AllieM, Meg - thank you soooo much. I was up googling most of the nite - like I used to in the early days of dx, never thought I would be back doing it again so soon ...... stupid BC. Meg I saw very similar info when I looked, it HAS to be my periods and I will keep believing that till my new results come back. I love you guys so much.
big hugs
Helena
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Hi all - newbies and oldies and middleies like myself!!
Laurie41 - How soon after starting tamox did your Hot Flashes start?
PattieB - My chemo hot flashes were mainly by day just a few at night but the Tamox ones seem to be mainly at night, they wake me up. Then I can't get back to sleep because of the hot, burning, tingling feet!! I see my onc on 25th and will discuss se's with him then.
Karen - I've not had a period since about my second chemo. Onc said it is unlikely they will return but that to be careful because I may still be fertile so take 'appropriate' precautions as it would be inadvisable to become pregnant while on tamox (Not part of my plan anyway, my 'baby' is 19!!).
Mary22 - Welcome home hope you are doing well.
Lena - The hot flashes started on day 6 of tamox. The chemo ones had just eased off at about 4 - 5 weeks after chemo. Weight wise I've lost the grand total of 0.1kg in a week even tho I've exercised everyday - I don't do self discipline well!!!
Rachel-BC - Hi, hope your doing well.
Helenaj - Poor you. My husbands view on these things is "don't panic until you know you have something to panic about". I think I may know how you feel a bit as I'm a little freaked about the high blood calcium level my onc told me about and I have to wait almost 3 weeks for the retest. I'll be thinking of you.
Well ladies it's 11.15pm here, I'm off to bed - hope everyone is doing fine!!
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Helena, Good Luck on your test, as far as I know I've never had this test, but I'm beginning to think their starting to ration me.
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Well I am all happy because I finally got the legal crap done. I have been out of my home since a fire in 2003, and the jerks are keeping me out of my home now... and there's all this toxic crap in my house because they - that is the building where my home, an apartment I own is- f*cked up the cleanup... and it hasn't escaped me that I had to work in my toxin filled home for months and now I have cancer... anyway, we're going to court and I had to organize all these freakin papers and notes from the 6 intervening years... but it I want to nail them to the wall I need to make sure I got the best hammer and sharpest nail... and baby... you know I do... right?
OK so Helena, I know nothing about this CA125 test but that's my next project once I get done this post. I think though that all I am going to find is the same as Meg- she knows her stuff and does her research and she's got far too much experience with this ovarian cancer crap in her family. Jeez oh man, a "number" of things that can cause elevated test result? They listed just about everything under the sun already and that's not the whole list! The number is 7 here and I got 2 of them already, fibroids and my period fcol. What a stupid test. You don't know anything more with it than without it. Mary, I hope it makes you feel even better about your decision to oomph. This kind of pointless test is why I have been pushing for an oomph myself. Hey Mary, if the Effexor works so well, could it help Laurie and the gals who are waking up from hot flashes? Or is that a different ball of wax? Everyone raves so much about Effexor, like its a panacea. Are there any side effects to Effexor? I mean aside from making PattiB loopy? I might like being loopy. I wouldn't mind having an excuse to be loopy. Unless loopy is worse than i am thinking it is.
Leggy... are you getting all polite and quiet? I ain't having that crap. If you wont call and raise hell about your x ray results, let me. Tomorrow is Friday and I won't let you go for another weekend of worry. PM me your hospital and your name. I'll be happy to raise a stink long distance and you can plead ignorance. I am so angry I could spit.
Hugs Ain and all...
Oh and here's a picture of me after the fire in what used to be my living room. Even though I tried to always wear a mask and chem boots and chem gloves, that little mask won't do much to help and there was waaaaaay too many times I was there without the mask working digging around for my stuff. The other pictures are outside my apartment in the hall.
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Well, how annoying is this... I just started looking, beginning with Susan Love's site for CA 125 and here's the top 4 hits:
Search Results
Your search for CA125 found the following documents: Displaying documents 1-4 of 4, with best matches first:
1. Conference reports: 2009
> MORE
2. Hot Topics: Dr. Love Reports from the 2009 ASCO Annual Meeting
Get the latest information on treatment advances for women with BRCA mutations or triple-negative tumors, using antidepressants while on tamoxifen, CA 125 monitoring for ovarian cancer recurrence, the use of MRI in breast cancer treatment, and more.
Results in multiple areas: Prevention/Detection, High Risk, Newly Diagnosed, Cancer Recurrence, Survivors
3. In the News: Study Finds CA125 Test Does Not Extend Ovarian Cancer Survival
A study reported at ASCO found that using the CA125 blood test to detect recurrence earlier does not help women live longer.
> MORE
4. In the News: Screening Can Detect Ovarian Cancer
Preliminary results from a large screening trial suggest that postmenopausal women who have a CA125 test and a transvaginal ultrasound are more likely to have their cancers detected at an early stage.Like... item 4 contradicts item 3. for crying out loud.
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From the National Institue of Health:
Ovarian Cancer Screening Using Ultrasound and CA125 Finds both Early and Late Stage Cancers, But Also Many False Positives
A new study from the NCI shows that currently available screening methods such as transvaginal ultrasound and testing for a protein biomarker called CA-125, alone or in combination, can detect ovarian cancer but can also produce many false-positive test results, causing needless surgery.Questions and Answershttp://www.cancer.gov/newscenter/pressreleases/PLCOOvarian2005Release
But oh oh, I finally found something good!!!! On the National Health Institute site, there's this...
Check out the Conclusions:
Conclusions. Accrual has exceeded expectations and compliance with three monthly blood
draws is excellent. For future studies, menopausal status, smoking status, and race should be
utilized in defining CPs for appropriate referral to TVS among subgroups. The standard cutpoint
of 35 U/mL is appropriate for referral to TVS among postmenopausal women at high risk for
ovarian cancer. For African-American premenopausal women, the cutpoint should be around
40 U/mL. For other premenopausal women at high risk, a cutpoint of 50 U/mL is appropriate,
with a lower cutpoint of 45 U/mL for current smokers.
So... that's you Helena, pre-menopausal, and the cut point should probably be more like 50 than 34 for you, putting you a measly 2 itty bitty points out of range. I especially like this because its a study trial of 2200 women, that's pretty damn good.
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Oh Rachel, that's so sweet, and if anyone can get results, it's you! This waiting is awful, and I left work early, cause I was bringing myself down, and couldn't escape me. I'm starting to think the worst, but maybe no news is good news. Thanks for the offer, but I don't think we better chew him out yet...maybe tomorrow. I also had a friend, who hit a parked car, while riding his bicycle, 3 wks. ago, and he had been in a coma, but last Thursday he passed away. So we just never know, and all this has me just feeling like shit. Saturday, I think I'll go to the beach and take a long walk, with Wolfie.
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Leggy, truth, I wouldn't start by being aggressive. Just don't be passive.You HAVE to speak up for yourself and take care of your health. When I called the pathologist, it was because that was the other name on the test as an ordering doctor. She was VERY nice and VERY concerned and got right on it and got my test results so that I could call the doctor. No need to chew them out. Sometimes stuff just happens. But you must must must be your own best advocate. Call. Be polite. But call. Write. Be persistent. Stand up for yourself. Everyone agrees these tests usually take 2-3 days and you are working on your 3rd week. Something is amiss.
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Rachel, I tried to see or leave a message with my GP on Monday, when I was at the hospital, and they told me I couldn't, but to email, which I did yesterday, and I know he read it. I know I won't hear from him now, before the weekend.
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