Bottle o Tamoxifen
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Hi everyone. This is my first time posting on this thread. I wasn't expecting to go on tamox but my oncologist is now recommending it. I am really nervous about taking it but have decided to at least try it and see how it goes. It took me a couple of days to drop off the prescription and I still haven't picked it up from the pharmacy, but I plan to pick it up today. I am really nervous about it, like JustmeAlicia, and probably most women. I feel very overwhelmed. I was glad to hear about this thread, looks like some good energy, supportive and helpful.
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Gulp ~ so far so good for me. Glad I too found this thread to go to! I am with you on the overwhelmed. You'll do just FINE!
Alicia
Happy Easter to Everyone ! Passover too ~
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Hi Alicia and Gulp,
Welcome on board this T train. Lots of great women here - helpful, funny, supportive, knowledgeable, compassionate. We've ALL been where you are - that first pill is something else. I am 6 months down
; only 4 1/2 years left and so far pretty good. All of us react differently but if you have questions - ask away - someone is bound to have a reply. We share many thoughts/suggestions/ideas....Hello Everybody else: Yeah Gina - sounds like you have turned the corner to wellness YEAH. Just to say I had a great visit with my son, DIL and new grandson - what a charmer. maybe I'll be able to show you a new pic in a day or two.
Happy Easter and Passover to you all
C
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Hi, thanks Alicia and bcamnb, thanks for the welcome. So my accomplishment is that I picked up the prescription yesterday but haven't taken it yet. Any suggestions on when is the best time to take it, at night or in the morning? I've read different things. Last night in the middle of the night I woke up in a sweat, thought "here are the hot flashes" and then remembered that I hadn't actually taken the pill yet!
Hope everyone enjoys the day.
Karen
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Hi Alicia and gulp: Welcome to the "ride". The humor of the Tamoxofen "train ride" helps keep me going through my pills each day. I say I'm in the coal car shoveling in the coal when I start to turn red and have a bad hot flash! I'm certainly not in the engine driving this thing!
I hope everyone has a great holiday!
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Hi Gulp,
Welcome to the tamoxitrain! I know that I looked at the medicine bottle for probably 4-5 days before I actually started taking my tamoxifen. I personally take it in the morning but I am always sure to eat something with it because I had heard it might cause stomach upset. I haven't had any problems with that aspect though. Some people prefer to take it at night. I do better taking it first thing in the morning---I'm afraid I would forget at night. I would suggest just picking a convenient time and seeing how you do--you can always change times if you need to. I feel very lucky because I expected to have lots of side effects but have really had few. I think the first pill is the hardest! The people on this thread are great about sharing info and supporting each other. Good luck!
TCK
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My onco has me taking it twice a day (5mg at a time). So far so good. No nasuea or blood clot issues, the big ones he seemed to worry about. Worst side effect is the hot flashes. I had my prescription filled and ready to go and then was told to wait to start by my BS until after my mx so I didn't have any "bleeding issues" during surgery. So I waited to start for about a month and a half and just stared at the bottle. Since my husband takes meds at 7 and 7 I just take mine at the same time.
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I started on the Tamoxitrain 2 weeks ago and had questions.
Seems like I am experiencing very lite headaches almost daily and am up at least 4 times in the middle of the night having to urinate. I also have been belching like never before-- BUT I am 3 weeks post RADS and was experiencing that during RADS too......
Are these S/E's normal with Tamoxifen?
Thanks,
Loretta\
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Happy Easter to all my friends on the tamoxitrain!
A quick check in to all of you. It has been a while since I've posted. It's been a tough time in my neck of the woods. We lost a very dear member of our staff at my school. I wonderful colleague, teacher and friend passed away unexpectedly in his sleep last week. So sad... teachers and students were devastated. The funeral is on Tuesday.. Life is terribly fragile. This was so unexpected. He was only 62 and in good health. I guess you just never know.
Peace and good wishes to all of you. Welcome to the newbies ...
xoxo Nancy
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Hi Loretta, I also had the side effects you mentioned- needing to pee more often and pretty frequent headaches (although not daily). I also had a lot of stomachaches, and a streak of days each of the first couple months where I felt REALLY tired, headachy, nauseated, stomachachey. Then I'd get my period the next week, so I concluded it was connected. The good news for me is that nearly all of this subsided (I started tamox on Dec. 1), although I still think I need to pee more often. So anyway, yes, at least one other person has had the SEs you're mentioning. I used alleve for the headaches as needed, and the peeing never got me up at night more than before so I didn't do anything particular, but I suppose you could stop injesting liquids a couple hrs before and that might help.
To the other gal asking about when to take it, I just take it in the morning after breakfast every day. I agree with others that it's important to pick a time that you'll remember. Also, if you've decided to take it, then just pick a day and dive in...the sooner you start the sooner you'll be done! And try not to worry too much about SEs before any happen (i.e., don't be like me!!) - for many many women tamox is tolerated very well and there's every likelihood that will be you too!
Best to all!
CS
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Hi Everyone and Happy Easter!
I'm another passenger on the Tamoxitrain!
I've been taking it for two weeks now and so far apart from waking up in the night to go to the bathroom no side effects.My onc. said because I'm younger (39) I should expect the side effects to be more intense. How long does it take for the hot flashes to kick in? and I know this sounds stupid but what does a hot flash feel like? I've woken up a couple of times in the night feeling a bit clammy but I don't think that is one or is it?!
Good luck everyone!
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Jules: Welcome! I'm getting up at night too and sometimes wake up with headache, but can usually knock it out ok with some meds. Everyone doen't get intense hot flashes. You'll know if you do. My husband says my face turns red sometimes. I just get very warm. I've heard some women it is so severe they change bedding (or beds) and pjs in the night. My onco said most women go in "spurts" with SE where they are more intense and then they ease up.
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Chevyboy, I have a question regarding your post a couple days ago (on the 1st) about chemo & tamox. There you said you onc "ordered the CYP2d test, & it confirmed that since I was a "20" I wouldn't have benefited from the chemo...(low end of the Intermediate range)." I'm confused, because I thought the CYP2d6 test was related to whether we are good tamoxifen metabolizers, not chemo effectiveness. Did you mean to say you had the OncoTypeDX test and got a 20? If you did mean Cyp2d6, can you comment on what you know about it relating to chemo effectiveness? I'd just like to better understand it (I admit, I'm a geek and like knowing all this chemical stuff!)
BTW, it's pretty usual for a surgeon or radiologist not to talk about the chemo, since that's the realm of the medical oncologist. They all generally stick to their own specialties and we have to bounce between them and hope nothing important falls through the cracks. (Sigh.)
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Yes, you are right cs7777! I'm sorry, I MEANT the "Oncotype" test, where they take the tissue & test it for the type of cancer you had....I had my tests mixed up! I still have not had the CYP2d test....I asked my Radiologist about it, also my Oncologist, & they both seemed to think that it wouldn't do much good...There is a lot written about Tamoxifen, & metabolizing it....I also found that article about Melatonin with Tamoxifen....I see the Oncologist again in June, & I'll try once more to see if I should have it!
And Jules.....I haven't had hot flashes either! I think it is just me! I have been taking the T pill now for 3 months....Maybe it depends on your age? I am old enough to NOT have them, Ha!
Jeannette
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Saw this today and I think if we all gang up on the SEs, we might win
xo and Happy Easter Monday - and post Passover w/end
C
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OK so how come my pic didn't transfer from the post a reply box to the messages?????
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Caroline...I know! Sometimes mine won't either! did you "Preview" first? Do your pictures usually show up? It's a mystery to me, why they are sometimes there, & if you look back a few pages, they are GONE! 0
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Well nine months down - nothing drastic to report!! Little bits and pieces that sometimes become more bothersome. I am due a visit to gyn this month and I'm rather curious about that - if there is anything to report back to you all on I certainly will!!
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YOGURT:
Since I eat tons of it....but I freeze mine and thaw it to the ice cream stage before eating because I don't like the texture. LOL I noticed this article:
What it does: As a health food, yogurt is almost as old as, well, good health itself. But experts say evidence continues to accumulate that reveals its benefits in many new and exciting ways. And not just yogurt. Somer tells WebMD that any fermented dairy product -- including kefir -- contains healthy "probiotics" -- bacteria with the power to protect you in myriad ways.
"There is a suggestion [that yogurt] may decrease the risk of breast cancer," Somer says. "And there's very strong evidence it can reduce problems associated with irritable bowel syndrome and inflammatory digestive tract disorders -- both conditions that impact women more than men." Additionally, she says, yogurt can help reduce the risk of stomach ulcers and vaginal infections.
THAT WAS ENCOURAGING.
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Hi to all my Tamoxi pals,
Sorry I've been kind of scarce lately. I'm back to work again. I was sort of laid off for a couple of months, until business picked up... now I'm working almost every day, and I'm feeling tired. I hate working on Saturday!!
Kelly,
Thanks for asking. I'm doing ok with Femara, I guess. But, I just had my cholesterol/lipid profile done again, and .... it's going UP UP UP I read that Femara causes elevated cholesterol levels and osteoporosis. I'm really worried about it. I really don't want to take any more medicine, I'm sure you all can understand. So, I have ended up taking LOTS more supplements... I have been taking fish oil, but now had to add red yeast rice to the mix.... pretty soon, I will need a HUGE pill box, just to hold all the supplements, and pills I'm taking.... .....sigh....
Hope everyone has a wonderful week...
Hope ya'll had a very Happy Easter/Passover.
Harley
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Yeah Harley - thanks for dropping by. Good luck with the mega pill box
The pic I have tried twice to paste is a pack of cats having a hissy fit - I thought that's what we could all do against our SEs!
C
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Harley: Good to hear from you. Sorry about your mixed feelings sbout the femara. Hope your additional supplements take care of the cholesterol increase. I know what you mean about the huge pill box
.Well, as much as I hate to admit it, I have noticed that I experience the situation where I am in the middle of a sentence and then all of a sudden I can't remember the next word I was going to say!!!! It just seems to happen more frequently nowadays. I don't know it it's the tamox, getting over anesthesia from 5 surgeries in 8 months, or just overload. I think I've read that others here have experienced this?
Hope everyone has a restful night.....no thanks to our tamoxifen.
TCK
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TCK, the same thing has been happening to me ever since starting tamox. But it could also be from getting closer to menopause. I've read a lot of books which discuss estrogen's role in our bodies, including the brain. It's from blockage or decrease of estrogen supplies to the brain cells from what I understand. And the difficulties with sleeping through the night which I'm also having are also from the same cause.
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Hey everybody! Hope you had a nice easter/passover.
Welcome, newbies! Jules, I've been on Tamox almost 3 months and haven't had a hot flash yet. I'm older than you are but very much pre-menopausal.
I have a vitamin D question for you guys- I called my onc to request a vit D blood level test when I see her 4/16. It turns out they did one at my last appointment and my level was 12! No one ever told me and my onc didn't seem concerned about it. She told me to take 800 IUs of D every day. She said the only other option was intravenous D. I know that's not true, my sister was tested last year and had a level of 22. They put her on RX D 50,000 IUs once a week until she was back to normal levels.
I was kind of stunned and didn't know what to say so I didn't call her on it... but really!
Shouldn't I push for the RX D when I see her? 0 -
Hi Sparrow,
We have a different measurement for Vit D in Canada, so I can't compare mine to yours. However, mine was borderline low and my doc has me taking at least 2000 IU/day. If I remember to take all my pills, I actually get about 2400 (400 in a multi vit; 2 x 1000). She said she has never seen a toxic patient and we in the n hemisphere simply do not get enough 'good' sun. There is new evidence vit D deficiency may 'help' breast cancer. Make sure you take the Vit D with a bit of fat (it needs fat to be digested). Bottom line - make sure you are getting enough and like my doc, get a recheck in 3-4 months.
Interestingly, I am sleeping better since I began taking my second calcium, 1000 Vit D and T with my supper. Coincidence?
C
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Sparrow, Your doc was definitely wrong to not tell you about the vit D level being low, but regardless of her falling down on the job with that, her recommendation for the amount you need to come back from being deficient is definitely too low. I did a TON of reading and research on this about 2 months ago (including everything in the original research literature I could find) because I was in a similar boat, so while this may get a bit long I'm going to summarize a lot of what I learned. First, the 50,000 iu 1x/wk for some period (typically 6-12 wks) is as close to a standard to replete someone as there is. However, you do not need to get the 50,000 pills with the prescription vitamin D, and in fact there is one good reason to NOT use the prescription form in the US and that's because it's almost always vitamin D2 rather than vitamin D3 (the form your body makes). There's debate about how different D2 acts than D3 but there is evidence of differences so my pragmatic feeling is that you might as well get D3, the type your body naturally makes. The good news is that you can get vit D3 in the over the counter vitamin section in many doses to fit your needs.
When my vit D level came back at 13, my GP told me to take 50,000 iu 1x/wk for 8 wks (and gave me the scrip) and then switch to 1000 iu/day. All my reading said the latter was too low so I talked to my GP and she said she's ok with 2000 iu/day because there is safety data at that level, although not higher levels. So, I originally started with the prescription vit D (D2, at 50,000 iu/pill) for which I paid a $5 copay for 4 pills (4 wks worth). After learning about the D2 vs D3 controversy, for my 2nd month at high dose I bought a bottle of vitamin D3 at 5000 iu/pill for $10 and got my 50,000 iu dose by taking 10 pills 1x/wk. The pills are tiny and it truly was not a big deal to take 10 at once. Then after a total of 10 wks on 50,000 iu (I forgot to stop after 8 wks), I just switched to 1 pill per day using the pills I had, for a dose of 5000 iu/day. (You can buy 50,000 iu pills of vit D3 over the counter, but you have to buy the full bottle of 100 for about $40-50, and if you only want that huge dose for 8 pills then you've wasted a lot of money. That's why I picked the 5000 iu pills.) Yep, my daily dose is now higher than my GP wants but all my research tells me that the 2000 is likely still too low in the winter and that the 5000 is also safe, so I'm going to stick with that until I finish my bottle of 5000 iu pills and then I may drop down to about 3000 per day. I'll repeat what bcamnb wrote in that the data show that it's almost impossible to overdose on vitamin D so you truly don't have to feel bad about taking more than your doc said. Most docs are truly, truly uneducated about the latest vit D research and the current "standards" are proven inadequate for most people now. The alternative to the 50,000 iu 1x/wk repletion regimen is simply a daily regimen like your doc recommended, but starting from a blood level of 12 you absolutely need more than 800 iu/day. Personally I'd do 5000, but you have to be the judge. I see you're in Georgia so your summer sun will help you soon too, if you get a few minutes of sun w/o sunscreen a few times a week.
And bad me, I didn't mention the food at all - yes you can get vit D3 from fatty fish, so if you eat fish then go for it. For vegetarians there's little way to get a decent dose w/o supplements or sun.
Finally, I will note that the few studies I could find where they followed up with a 2nd blood test after high dose regimen, many (typically more than half) of the patients still were not up in the "normal" range. Their blood levels rose, but not enough. So, it is imperative to get your level checked again after you've been through a repletion regimen and make sure you're truly repleted, don't just assume you're good. And finally, finally, note that everyone is more likely to have higher levels in summer (unless you religiously wear sunscreen over every inch of body) than in winter, because in winter there's not enough UVB in the sun to stimulate production in your skin (it's worse for longer the further north you go). Obviously this has implications for how much you supplement, but also for interpreting your vit D blood tests. A good test in August may be a poor indicator of your level for half the year when you make little/no vit D yourself through the winter.
Well, sorry this got so long, but hopefully my weeks of worrying and researching can help spare someone else the same!!
CS
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chevyboy, Thanks for answering my Q about oncotype vs cyp2d6...I was confused!! Re the cyp2d6 test for tamox metabolism, I'm trying to remember what my onc said about it. I think he said that the test only measures one common type of ccyp2d6, and if you are of certain ethnic origins you almost certainly have a different one. So if you get a result that you're good metabolizer, you almost certainly can believe it, but if you get a result saying your a bad metabolizer it might not be true, you just may have a different form of they gene that they're not testing for. I'll check with him again at my next visit but I think that was the upshot of his argument (he doesn't like to test).0
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Thanks, Caroline.
CS- wow, thanks for all the great info!
That was so helpful! I feel like taking 50,000 IUs of D3 a week until I'm back to normal is the way to go (then 2000 IUs a day). Thanks for the heads-up about the 5000 IU pills! I'm going to run this by my onc (to let her know what I'm doing) but I'm going to try it even if she disagrees. I want to be sure and get tested again in 8 weeks or so to see how it goes.
If you don't mind me asking, where did you find the 5000 IU D3?
Thanks for taking the time to reply in detail, I really appreciate it!
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I can't remember who posted the information about taking turmeric for joint pain but I wondered if it was safe to take with tamox and if there are any issues with taking it.
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Hi Sparrow, You're certainly welcome! You can find the 5000 iu D3 at a good health food or drug store that has a good vitamin section. (Surprisingly, I couldn't find it at Whole Foods - they just had smaller doses.) One additional caution (shouldn't be a problem at this dose, but...): make sure that you do NOT get one that has vitamin A in it too (some fishoil based D3 supplements keep all the vit A in the oil too). This is because you CAN overdose on vitamin A, and since you're going to take many pills you want one that just has the D3 in it. If it has A it should be on the label, so if A is not on the label you should be ok.
Don't be surprised if your onc is negative about this, as, like I said, many docs are truly ignorant of appropriate doses of vit D and appropriate regimens to replete patients who are deficient. When I told my BS about my regimen she was glad I was getting repleted (at least she understood D was important!) but reacted negatively about the regimen ("that much can't possibly be absorbed!" she said). I assured her I'd looked at the research myself and indeed it is absorbed (and in fact our bodies make 10,000-30,000 IUs in a half hour of sun in the summer) and she backed off. Just giving that as an example. Luckily my GP is reasonably knowledgeable & supporive (though she doesn't know I'm on the 5000's!).
Oh, one more thing, talk to your onc about when to retest...my GP said not to retest immediately after finishing the 50,000 for 8 wks, but rather, wait until I'm stable ( a couple months) on my long term daily dose, so I could be sure that actually maintains a healthy level. If you test right after the 50,000's you won't know if dropping to the 2000 daily keeps you replete or if you fall low again. Or you can do the test after the 50,000's and again after a couple months of 2000's, but that gets old.
Hope that's not TOO much information!
CS
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