Bottle o Tamoxifen
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Chelev, excellent article!
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Chelev, great article, now I see where your name comes from!
nice...I've actually had some 'mojo' stirrings! and I made DH very happy a couple of times the past 2 weekends! I won't question it, I will just enjoy!! like Meg says!
I've had the dizzy problem, but I can't blame it on Tamox. My daughters and I have all had this problem, and has to do with the lower normal end of the blood pressure range and when we get up too fast sometimes, things get black. Happens more often in the hot weather. One time my older DD fainted and hit her head when she got up too fast in the heat of summer. Maybe cause its been really hot in Florida?? who knows...I hope it dissipates fast!
Leggy, I will post the photos, no problem! It will be fun for us gals...if anyone else is out there who wants to join us, please let us know! Even those lurkers out there! We're all sisters!!
Helped my older DD with wedding invites last night and I stayed in on my lunch hour stuffing and labeling...DONE though! yay!!
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Jeez its so darn hot here in NYC again I thought I was having hot flashes.
Guess I can look forward to the rain next?
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Welcome Juli
Any time I try to do anything with the font thingies here it screws up... here I will try:This should be bold
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Just read the article Chelev- the best part is what YOU said!
I will Tivo the today show Friday- thank you for the heads up!!!!!I shoulda got your autograph
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Also reminds me to send good vibes to Mary for tomorrow! :::good vibes::: !!!
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Hi everyone. I'm switching over to this topic from Sept and October Rads. I'm finishing normal rads on Monday and then have 5 boosts. Will see my med onc right after and probably start tamox then. In the meantime I've got tons of questions, esp. about the side effects so I'm reading away on this thread, Only up to page 30 so lots more to go. Boy you guys have kept this thread up for ages; impressive !!! (But hard to catch up !)
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I think I'm having a tamox SE.
I started tamox on 9/5 - I will be taking my 45th pill tonight.
My period is very regular, like clockwork, got it right on time on 10/3 (preceded by a week of very strong PMS). Nothing different about it. This a.m. I jump on the scale and I'm 2 lbs heavier than I was on Friday, which struck me as very odd b/c I've been running, eating well and dropped a couple of pounds over the last two weeks. By mid afternoon I started feeling crampy and then I got my period again (but very light). I called my oncologist and he said it could be post traumatic stress from my diagnosis, which I don't agree with - I'm not stressed at all (or at least I wasn't until today) or it's "possible" that I'm reacting to the tamox, but he doesn't "think" it's anything serious b/c I've only been on tamox for a couple of weeks. I don't think it's anything serious either, but I am concerned about the bloating, cramps etc. twice in one month. Until now my only tamox issue was remembering to take it. Has this happened to anyone else?
Thanks!
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j414- It could be Tamox, it could be stress, it could be normal aging period stuff... before SFBC and before Tamox my period was suddenly- after 40 years of being regular like a clock, seriously, I could tell you what TIME it was coming- it just started faking me out, coming when it shouldn't, stopping and starting, flooding like unbelievable- wrecking my sheets and I can't wear anything but black pants, and i have to check the seat I just sat in before I move in... 2 months is when they say the SEs begin, I started right about when you did- which makes me scared as heck to read your SEs, now I will get your SEs... and its PMS time for me... the 2 pounds, you know our weight fluctuates, especially with period, dieting and stuff... but I am thinking maybe your question really is about the uterine and ovarian cysts, and whether Tamox is working? Yes?
MTG- Welcome
Wow- you're trying to read the whole frikin thread? I some of the first pages, and I read some of the pages before where it was, but I didn't try to read the whole thing! I think someone else read the whole thing... well I apologize in advance for my long posts! I repeat the same stuff here so often, I copied my last sort of welcome post and will repost it here, its not superb but I think its a fair overview... needs some editing but I think you'll get it...
A mixed blessing having so many New York gals here... OK here's the thing from before:
Look I dont know what motivates some people to go all Halloween on Tamoxifen. Yes, there are some people who can't take it, and that actually sucks for them, because just about everyone who is told they can't take it is scared that means their chance of recurrence is going up or they're going to have to take some other treatment that would be more difficult to handle than Tamox. None of us are stockholders in the company that makes Tamox (are we? anyone?) and but we're all grateful that we have another way to try to protect ourselves from SFBC (btw, that's SFBC = Sheet Fook BReast Cancer, and I dont mean Sheet Fook) and on this thread we're all trying to help each other make it work... (I sound like Tim Gunn now). On the threads that say things like "Anyone NOT taking Tamoxifen" they are saying from the outset that they aren't taking it, so if you go there, that's the news you are going to get. No slight to the other thread intended. I have no right to speak for others on this thread, (as I just did) but from participating and reading here for months it seems we are here using our wits and our wit to have the best possible experience and take the frikin pill. Bottom Line: take it and see. Happily, any bad SEs from Tamoxifen go away when you stop taking it. It's not such a huge commitment.
I do have some ideas on how to start Tamox, but they are just my ideas. No proof.
There are some tips - always confirm with your ONC- like if you are going to have surgery maybe stop Tamox, and if you have SEs we have found some things that work to deal with it.
And I have links to some big big studies on Tamox that show that yeah, women report side effects on Tamoxifen but guess what, women report the same side effects on placebo- that is, except for the hot flashes. And you already have the Effexor and the Hot Flashes so...
You could do a test to see if you are metabolizing Tamox before you take it, a lot of people are doing that. And there are drug interactions with some stuff you might be taking, but a good ONC should be on top of that.
I could go on but tomorrow there will be another newbie and I'll be repeating myself... i should write up a FAQ... but I hope you will stick around here and catch up on posts and ask questions and share some laughs.
Oh here's one I did, I wrote up all my "symptoms" before I started Tamox. So when stuff happens I can look back and say, oh yeah I had that before.
and we joke a lot about blaming stuff on Tamox- especially since Helena's scalp starting itching and she wondered if it was Tamox and it turned out to be... head lice.
So give it a whirl, keep a good thought, join us on the train and my advice- try not to read the bad news. Stay positive.
On "Natural" supplements... OK so here's my .02... all these supplements are or can be as powerful or more so than the "drugs" and "medicines". I mean, if they weren't, why would we even bother, right? And yes, the drug companies definitely are working the profit motive and are all sorts of bad: not disclosing bad things about their products, discouraging natural solutions, who knows what else... but... bottom line, the drugs have been tested and studied and the natural solutions have not, the drugs our ONCs are familiar with, the natural solutions they are not, the natural solutions vary in many ways, the drugs are standardized. We don't know WTF causes cancer, recurrences or metastases, we're only working from percentages of results over time, so why NOT try what's been tested and approved before throwing an unknown into the mix?
Before SFBC, I definitely tried natural solutions for all kinds of issues: Melatonin let me sleep at normal hours for the first time in my life after 35 years of trouble, sucking zinc cured my sore throat, eucalyptus helped my niece with migraines, eating a grapefruit each morning kept me from getting colds -and now there's news that
grapefruits are tied to breast cancer..
Whoa nellie! Grapefruits? And eating soy DEFINITELY gave me a boob cyst in the same place as my SFBC 6 months later- although the cyst isn't SUPPOSED to have anything to do with SFBC...
So now that I have SFBC, and all I have is the frikin stupid percentages of what's been studied to go by to save my frikin LIFE ... if I have a problem, I will try the recommended approved drugs and be grateful and try to make them work. I'll only start adding natural supplements if all else fails and its a serious
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Thanks, Rachel. I was so irregular througout my teens and twenties that my doctor put me on birth control just to get some regularity. Didn't like taking a pill every day, so I stopped after two years, but things remained steady since. I've had a couple of bumps here and there (debilitating cramps a couple of times a year), but overall it's been steady. I called my gyno this a.m. and she said my body is just adjusting - hopefully she's right. I kind of like to know when it's coming and I only want it once a month. So far this has been the only SE and it's not that bad - I'm just cranky b/c I'm crampy and I tend to retain a lot of water - breasts, ankles - it's not comfortable or pretty. Otherwise, the tamox has treated me well and i'm not really concerned about the scary, rare SE - it's too soon and the risk is still very small.
MTG - welcome!
Best to all and have a wonderful day!
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I've been reading here every once in a while since dx, and daily for the past few weeks. I jumped on the Tamoxifen train yesterday. I am only one week out of chemo. I still have lots of SE from chemo and the steroid premeds. And I'm having HF already from chemopause. So, not sure I could delineate between leftover SE's and those that may be from Tamoxifen. I love that study about the placebo/Tamoxifen reporting same SE's. I sort of think even if there are SE's that I will try to muddle through. God knows I had unbelievable SE's on chemo and would never have refused that. I figure I've got cancer and I'm going to have to deal with some SE during treatment. My SIL and good friend aren't having any SE other than hot flashes.
My onc said she only does the CYP2D6 on postmenopausal women who have other good anti-estrogen options. Not pre-menopausal women for whom this is the only proven anti-estrogen option. I don't second guess her on this.
Regarding D3 levels, she said to take 800 mg daily and she'll check my level at my 3 month followup in January. Toward the end of my 161 days on chemo, she had me go on a multivitamin with iron to help with anemia...just noticed the multivitamin has 800 mg of D. Is this what I should take or D3?
I'm in chemopause and no longer menstruating. If my period resumes or if I have spotting...she said I would have to have an Oophorectomy and take and AI.
The only thing I'm freaked out about is this: I have a blood clotting disorder which has caused miscarriages (a blood clot forms between the baby and placenta and cuts off nutrition) but never a blood clot. Before starting chemo I saw a hematologist to see if I should be on a blood thinner during chemo. He said that the disorder normally manifests as miscarriages OR blood clots, not both. He said no blood thinner during chemo. But he didn't address whether I should have Tamoxifen. The onc said at the time that if the hematologist determined I couldn't have Tamoxifen, I'd have an ooph and take another drug which she said you can only have if you do not have ovaries intact. When I saw her last week at my last chemo appt, she hadn't yet consulted with him on me taking Tamoxifen but said she would let me know before Tuesday when I was to begin taking it, if he said not to. I didn't hear from her. The idea that the disorder NORMALLY manifests as either miscarriages or blood clots...doesn't feel too reassuring to me. But, I trust the docs and don't want to be without the Tamoxifen...so I started taking it. I'll just be vigilant about blood clot symptoms I guess...same as when on chemo.
This is a great thread. Any comments on my situation are welcome!
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j414, after years of being set your clock by it regular, my second period after I started Tamox was only 3 weeks after the first one. Since then, (more than a year) it's been running every 5 to 6 weeks, and has been lighter and shorter than it had been. Hopefuly your body is just adjusting to the Tamoxifen, and will settle back out soon.
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Welcome Benisse! So you started taking Tamox already? Is it next Tuesday that your onc said they'd check back with you? Keep us posted...My onc said that she would run the CYP2D6 test, cause I asked her too, but said there is controversy and she'd talk to me about it at my appt. in 3 weeks. I also take a multi that has Vit D and Calcium w/D and also a separate D3 of 1,000 mg, my onc said this was ok, cause I want to up my current level of 41. A friend of mine just got her period back 11 mos. after not having one from chemopause and her onc is having her take the tumor marker test for ovarian cancer and depending on those results, she may have to get an ooph or a hysterectomy.
Welcome MTG! And congrats for nearing the end of Rads. I started taking tamox when I started rads.
Welcome Juli! I lurked on your chemo thread last year and never posted!! good to see you here.
Remind me what's going on with Mary tomorrow?
Also good vibes to Meg - ivorymom, she's having her ooph tomorrow morning, bright and early!!
Rach, how's the kid?? Hugs sista!
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Just checking in to say hello to you all. I have a quick question. I was dx in Jan '09 aged 45 pre meno (but on contraceptive pill longterm). Hit chemopause in April, started tamox end July - I've not had a period since April and even that was very slight. What I was wondering is - is it likely my periods will return and if so how long after starting Tamox could that happen?
I am jealous of hearing about those of you who get to meet up!! Anyone coming to Ireland any day soon??
And the Tamox train trundles on....
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hello to everyone and especially to the newcomers!
Ainm, I wish!!! (going to Ireland - although I did get there in 2000....) Can't answer your other question, though as I had hysterectomy 25 years ago.
Rach, it's not hot here and I am definitely having hot flashes, or I should say "More than usual hot flashes." So, yeah, I'm attributing it to the Tamox. Also have noticed a vaginal discharge in the last week, so there's SE #2.
GEEZ, 2 SE's after 3 weeks of posting "nothing happening!" What's going on?
(Seriously, though, I can probably live with those 2...as long as I don't keep adding things to the list...)
***Good luck, tomorrow, Mary!****
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Thank-you for all the luck and well wishes. Let's just say that after a panic attack at the Mammo place, I was quite relieved that everything came back clean!!!!!!!!
I was good all day and tried not to think about it, but once I got close the the machine, i broke down and started crying! Then after the mammo, I had to sit and wait for the radiologist to read the film. I was happy when they said everything is ok see you next year! Then I went upsatirs for my yearly pap smear. The first thing the doctor said was your bp is a little high you should see your family dr. I told her that I just came from first post cancer mammo and I was quite anxious. Then she looked at the rest of my file and said she could see why bp was high.She still wants me to check it regularly.
Welcome to all the newbies, life on the tamoxitrain is not bad.
OOOOOOOOHHHHHH!!!!! I also got some more good news, my wieght is the same!!!!!!!( with the way we have been "stress" eating at work I should have gained 20lbs) So I was pleased with that result too.
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Ainm, I was also premeno when starting chemo Aug. '08 and had one period in Sept. '08 and haven't had one since. My gyn said she since I'm 47 that I probably won't get them back, but my Gyn tested my hormone levels - FSH & Estradiol during chemo and I was 84 and post menopausal women test at 85! After chemo she tested my FSH and it was 67.8 but my nurse said they wait for one year after chemo ends to get a true reading. The nurse said that Tamox can sustain imposed menopause. They kept telling me during chemo...cause I was crying ALL the time that my hormones had crashed horribly!!
Hi PattyB! WTH with your new se's??
Hugs, I'm outta here (work that is)...
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Mary, we were cross dressing (posting)
Forgot your mammo was today (sorry
) CONGRATS!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 0 -
Ainm - Like Kari and you I have not had a period since my 2nd chemo treatment in April. I was very regular before surgery in January. My NP said I would probably not get it again because I am 51. After a year or so, they will check levels to see if I am in menopause, then I may have to change from Tamoxifen to something else.
Welcome newcomers - have a great week all. Congrats Mary!
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hiya, Kari!!
Well, don't know what's going on with the SE's popping up, but I've been having hot flashes off and on for the past year -- since trying to cut back on my HRT, which I'd been on since my hysterectomy 25 years ago! Then, when I got my BC diagnosis in March, I stopped the HRT completely. Of course, this meant more hot flashes and some other complications. The HF were getting somewhat better until just this week, and now I'm having them a lot more. So.....I'm thinking it 'must be' the Tamoxifen, although really, who knows??
Still though, neither the HF nor the discharge is a major deal, in my opinion....not enough to stop taking the Tamox.
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Mary--Congrats on the good news. And welcome all newcomers. I am so tired I have looked back a couple of times to remember names, and it just won't work; so forgive me and know the welcome is sincere. With regard to blood clots/blood thinning; my internist told me to take Omega 3 fish oil capsules 2xday to reduce risk of blood clots. I seem to be having some elevated blood pressure, after a LIFETIME of low bp (90/60--100/70), which appears to be related to Tamox; who knows anymore?! I think the fatigue has been the most challenging part but I have not felt so overwhelmed that I was tempted to stop the Tamox. I am hopeful that my body will slowly adjust (it's been a little over 2 months now). Sure, I wish there was a side effect free med to take, but I don't think that's out there and I am still very motivated to reduce my risk for another cancer experience. Good night to all....
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Hi again. Kfinnegan - I did start Tamoxifen yesterday.
So glad I knew to ask about D3 from you all because she didn't mention it. But as soon as I said something about it she said to take 800 iu's and shed test it in Jan. But shouldn't I check levels before beginning the supplement????
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Just posted on another thread (Vag dryness, sigh), so thought I'd pop in with a hello to all my Tamoxifen friends. SO enjoy this thread!
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hiya benisse- I think you have some very valid questions, worth the struggle to get an answer from your ONC. Like the D3 level, there is such a thing as too much- and its just as bad as too little (lemme know if you need the link to the studies to back that up). I know how much it sucks having to go back to the docs and ask them questions and get the answer... but picture me pushing you really hard to do it! ::::::push:::::push:::::
You had some other great questions on your previous post, get the answers for them too!
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Don't know what it is but this week at work am turning my heater on then I get a hot flash, turn it off, wait a bit, get cold...and the saga continues....very weird!
Benisse, when I spoke with my pcp about Vit D first she had mine checked, then I went to my onc to talk to her about the whole Vit D thing and she said that even though my level was 41, to add 1,000 and we'd check it again. But yes, too much can be toxic. push:::::push:::::::
Hi everyone else!!
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kari- I just did a quick search looking for the Vitamin D3 info, how much is the right level etc and what I found on the National Cancer Institute page :
http://www.cancer.gov/cancertopics/factsheet/prevention/vitamin-D
Is very well summed up on Susan Love's site:
Vitamin DThis is a complex topic, and it is not clear that low vitamin D levels are related to breast cancer risk apart from physical activity and BMI. There is also data that you can have too much vitamin D; as with everything it is a U- shaped curve with problems at both ends of the spectrum. The session confirmed my suspicion that the hype about Vitamin D is premature. The best thing we can do to prevent breast cancer is exercise, but maybe doing it outdoors will give double benefits!
So I don't know what to make of it, except maybe if we're tested and found to be DEFICIENT of Vitamin D, that's worth taking?
benisse, nice explanation of the various vitamin Ds on that NCI link...
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I was check prior to taking the Vit D. My NP said the have a scientific tabulation for how much you need to take to get you where they want you. I didn't ask how high they actually do want it to go. I will ask at my next appt. If I remember correctly she said your D level should be between 30-80. Mine was 29 taking 1000/2xday for 1 month increased my number to 36. I am know taking 1000/1xday, and a calium w/400D/2xday for a total of 1800 D a day. I will get check at my November 11 cancerversary onc/mammo/dexascan appointment.
Going to my 6 week cancer transitions class at the Philadelphia Wellness community, got to go.
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Taking the Ambien at night. Not happy, but it seems to help a bit. Thanks ladies -
Be good to you -
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PattiB- Mine is 30 and he said that's "normal". I can only assume he's using the same measure. Color me a bit lost, I am unthrilled to be at the bottom of the range- especially after a summer outdoors!
LittleRed- whatever works girl! You wouldn't have picked your name from Little Red Rooster didja?
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Dear Rachel_BC:
No - just came from the heart. I think sometimes it should have been 'little red hen' - I have to do it by myself...can I just offer up a 'men suck' right now? I know this isn't the forum for it...I'm just having a bad day...
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