Bottle o Tamoxifen
Comments
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I have a question for anyone who had reconstruction with an implant. I am 6 weeks post BMX (I didn't need any fills) and just got a RX for tamox today and asked my onc if I can wait until after the implant exchange(in 3 weeks) to start taking it. He wants me to start right away. Did anyone here wait till after the exchange to start it, or did you start taking it before the exchange?
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What price are the rest of you paying for Tamoxifen? If I buy it using my insurance at CVS, the ins pays $4.95 and I pay $10/month. I know some stores sell 90-day supplies of common generics for about $12, but so far I haven't found one that includes Tamoxifen.
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I've been taking tamox while I've had my TEs. I started about 5-6 wks post-MX, and its now been 5 months. I'll have my exchange next week. There's nothing magical about not taking it before you have your final implant that I've ever heard, and in fact most people's reconstruction process last a number of months and most onc's wouldn't want to delay start of treatment just for that. Anyway that's my understanding. (Just think - the sooner you start, the sooner you're done...)
CS
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Waldo: I started taking my tamox in Oct '09 about 3 weeks after my BLM/TE surgery. My exchange wasn't until Mar '10. My thinking was along the lines of cs7777.
susiered: I am 46 and I opted for bilat ooph and hysterectomy(Dec '09). My BS and onc both suggested that I should have the ooph. After consulting with my longtime regular GYN and my GYN surgeon, I decided to go ahead with the hysterectomy also--that way I will not have to worry about cancer there and also potential uterine bleeding problems/thickening that I have heard so many experience when on tamox. I really don't feel any different than I did before -- guess I was close to menopause.
TCK
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Waldo: I started Tamoxifen while I had the TEs and before my exchange surgery. I even remembered to take my tamoxifen the day of the surgery too!
MaryNY: My insurance covers Tamoxifen completely, I do not pay anything.
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I started taking my tamoxifen last august and I have my exchange this June. I think the idea is just get on it the sooner the better.
Hannahbearsmom thanks for answering. So you have not really had any bad se's from the hysterectomy? I have also thought as long as they are taking ovaries they might as well get it all. Less to worry about right? Are you still taking Tamoxifen or did you switch to AI?
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Susiered: I haven't really noticed any new SE's after my ooph/hyster than before. I started tamox about 7 weeks before that surgery. I have a few hot flashes but not too bad. I am enjoying not having a period/cramps/etc
! I am taking Vit E at the advice of my onc to help with the hot flashes--not sure if it's really making a difference or not. I really had to think about it and as I said I met with my longtime OB-GYN before I made my decision. My surgery was robot assisted laparoscopic which was much easier than an open surgery would have been. I am still taking tamoxifen. After having my CYP2D6 level checked and learning that I am only an intermediate metabolizer, my dose was increased to 20mg twice a day last month. I will have my next appt with my onc in July so I will have my level rechecked then and discuss whether I will stay on tamox or switch. I certainly do not want to be taking it if it isn't really benefitting me or if something else would be more effective.TCK
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Hannahbearsmom: What do you mean about having your "level checked"? Do you mean the level of endoxifen? Like you the CYP2D6 test showed me to be an intermediate metabolizer. I asked my onc today if she treated intermediate and strong metabolizers any differently as regards dosage. She said no, that she gaves the same Rx to everyone. In fact, at that facility they don't even do the CYP2D6 test as she described it as controversial. I'm not sure what to think. I certainly wouldn't want to put my faith in Tamoxifen and endure its SEs for five years if it wasn't doing anything.
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MaryNY: Yes endoxifen. I am in a study and for intermediate and poor metabolizers they increase the dose to 20mg twice a day and recheck the endoxifen level again in around 4 months to see if it has changed. I really haven't talked to my onc about it because my last appt with her was in Jan and I started the study in April. My next appt with her is in July and I will be having my level checked again that day. It does take 1-2 weeks to get the results back. I will have plenty of questions for my onc about what her plans are for me in relation to my levels. I also want to ask her if she plans for tamox for 2 years then switch to AI.
TCK
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Hannah: I'll be interested to hear if there is a difference in the levels after your dose increase. Also wondering if the higher dosage will accentuate the SEs for you.
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MaryNY: I'm really hoping that my level will be up too, but without any increase in SE's
. Only time will tell--so far I haven't noticed a change but apparently it'll be a few more months before my levels become constant after the dose change.TCK
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Hi all, I saw my new GYN today who's supposed to be very knowledgeable about tamoxi-babes and I liked her a lot. Since I wasn't due for my yearly exam yet, we just talked about tamoxifen and how I should monitor its effects on my gyn health. I'll just put out what she said in case anyone's looking for a second opinion w/o paying for it, or there are some newbies who haven't had detailed talks w/their docs yet about this stuff. She said, for premenopausal women, tamox is expected to increase the uterine lining thickness, since it acts like extra estrogen on that organ. She doesn't recommend regular ultrasound screening because, surprise, it shows the uterine lining is thickened, and once we actually get such a test result we worry about it and feel the need to do even more testing to prove it's not cancer, and it almost never is in her experience. Instead of that screening, she said the best way to monitor for problems is with my periods - regular periods are fine; skipping one or more periods is fine; periods stopping altogether is fine; getting extra periods on short intervals is not good; spotting between periods is not good; a period that drags on & on w/spotting is not good; if my periods stop and then much later I get spotting that's not good. I'm to call her in any of the latter "not good" events. Anyway, that made sense to me and I'm ok not having the ultrasounds; I just thought I'd share her approach.
Hope everyone's having a good week!
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Waldo: My BS told me to not take it until my mx was over. My PS though said I don't need to stop for exchange. Maybe it is a personal preference or the shorter surgery time involved with exchange?
MaryNY: I buy mine at the pharmacy at our local grocery store that is a Kroger affiliate. I pay $9 for a 30-day supply of the 10mg tablets you take 2x a day. I don't have drug coverage and thought it was pretty reasonable.
Hannahbearsmom: My husband's hepatologist has him on Vit E to help with his liver numbers because the meds are all processed through that filter in your insides and hard on it.
cs7777: Thanks for sharing the input! I had planned to ask my BS (a woman) for a referral to someone since I always did my exams at my internists office before. My onco said that many GYNs will automatically just biopsy anyone non tamox and he doesn't think that is a good idea or necessary and carries risks by itself with that procedure. I'm personally tired of people poking me and looking at me....I didn't sign up to be a stripper or a porn star!
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Does anyone experience headaches on Tamox? What to do about that? Do they eventually go away? I started back on it earlier this week. Didn't have these before. My oncologist says if chemo stopped oyur periods you don't need to take Tamox. So for the 9 months I wasn't having periods post chemo I didn't take it. Now I have my periods back so am back on. Sigh.Thanks for the heads up on the periods thin. I will watch that to make sure they don't become too ffrequent or spotty.
Question: I wonder if Tamox is designed to block estrogen from breast tissue and you have had a Bx Mx, why do you need it? I would think the chance of a recurrence is super low after Bx Mx?
As to the ooph or full hyst question, my gyn said that many women who opt for a complete hyst end up with their vaginas falling out in their 50's and 60's. No cervix to hold it up - makes sense to me. My grandmother suffered that after having a hyst in her 20's. I have only had one ovary for the past 15 years so in my thinking it is doing double time releasing eggs (the same ovary now haas released each month instead of every opther month) and I should end my cycles (go into natural menopause) in half the time? She says it doesn't work that way but couldn't give me a reason why.
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It is not a preference. Tamox raises the risk of blood clots, It should be stopped a couple of weeks before surgery and not restarted until you are up and about after surgery and the risk of blood clots decreases. I think some doctors just forget.
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bcincolorado: I'm with you on the poking and prodding part. Enough already. While part of me wants every test "to be sure", I seem to have come up with a set of docs that can explain rationally why more isn't necessarily better, and so I'm good with it.
KorynH: I'll just comment on a few of your questions - Headaches - I had some in the first couple months on tamox and I just took Alleve for them if they didn't resolve themselves after a couple hours. They've mostly gone away. I can't guarantee yours will, but that's what happened for me.
Purpose of tamox, even after BMX: tamox does indeed block estrogen's action in breast tissue and breast cancer tissue. The reason that some women might be recommended it after BMX is in case any of the cancer cells had spread elsewhere in the body - it blocks estrogen to them whereever they are and "starves" them so you don't get a metastasis growing. In addition, a mastectomy doesn't remove 100% of your breast tissue, so the little bits that are left behind, as well as the scars where everything was taken out, sometimes have recurrances. People's surgeries plus their BC type would be factored into the decision as to whether or not to recommend tamox. If you had DCIS only and had a BMX, for instance, your stats are already 99% likelihood you will have no recurrance, so you won't be recommended tamox. If your disease was more serious though, esp if you had positive nodes, then you still might be. If you yourself had a BMX, you really should ask your onc this question about whether you've already reduced your own chances of recurrance very low so do you really need the tamox.
Regarding your comment about not having periods after chemo so no need to be on tamox during that time, I will note that about 75% of a woman's estrogen comes from the ovaries, and about 25% from the adrenals. To the best of my knowledge, your periods stopping is only an indication of ovarian function, and you'd still have the estrogen from the adrenals. This is the whole mechanism behind the use of aromatase inhibitors (AIs) for postmenopausal women: their ovarian estrogen is gone, and the AIs block the adrenal glands from making estrogen, so now the body has almost none, which starves any remaining ER+ BC of estrogen. Now, the study you cited earlier does show that premenopausal women who had periods stopped by chemo did appear to have fewer recurrances, similar to the use of tamoxifen (although scientifically the difference didn't reach "statistical significance" - in other words, there effect wasn't large enough and there weren't enough test patients to say for sure that the effect didn't happen by chance). So, that study suggests that just having no periods is helpful to reduce recurrances, a good thing for sure, but your doc's using it for telling you to stop tamox is really nonstandard. If no periods alone gave a woman maximum anti-estrogen benefit then AIs shouldn't do anything for postmenopausal women, and yet they do. Please be assured I'm not saying your doc did anything wrong, just nonstandard. Anyway, it seems you have a lot of questions about how tamox works and whether it's right for you that perhaps aren't getting answered by your current onc, and if that's the case you might find another for a second opinion.
MaryNY: I pay $10 copay for a 90 day supply of 20 mg tablets through the mailorder pharmacy that has an agreement with my insurance company. You might check if your ins has a mailorder pharma partner, since it's almost always cheaper that way. Since your copay is your copay, you probably will pay the same no matter where you get it, but it's vaguely possible that the big discounters like WalMart and Costco still might offer it cheaper so you might check those. Also, I assume you're on the generic version, but if not, then if you switched you'd likely pay less that way.
Yikes, another long post...sorry to hog the board this a.m. Hope all are doing well!
CS
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No need to apologize for the long post, cs7777, I really appreciate it! Your posts are always so helpful. I didn't get my period after starting tamox. I wonder if that's it, no more or if I'll get it again. My gynecologist said the same thing about about ultrasound testing, but because I have a hx of fibroids and had a myomectomy with her (removal of fibroids but keeping the uterus) she wanted me to have it done to see about fibroids. hearther13, I'm scheduled for my exchange on May 20th and just started taking tamox about 4 1/2 weeks ago. I called my onc to see if I should stop taking it and he said no. I had assumed I should stop beforehand. It kind of makes me crazy, hearing different opinions such as that.
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cs7777 thank you for addressing that about not needing to take Tamox because of not having periods. Even though my period will not shut down and I know I need the Tamox, it scared me that some are not taking anything because of no periods. You are right about the adrenals producing some estrogen.
KorynH did your doc have you on an AI instead?
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CS7777-
Thank you for the huge amount of information you gave about Tamoxifen. I see a military doctor. From what I understand, military doctors cannot be sued (somebody correct me if I'm wrong) and this allows them huge variances in how they practice. They are not bound by "standards of care" dictated by insurance companies and many HMOs in order for civilian doctors to get paid. The way he described it to me was that my grade 3 tumor, while aggressive, is actually more responsive than lower grade tumors to chemo therapies (which I had). He also believed that my higher risk of recurrence comes from her2+++ (I did 12 months of Herceptin), not the er+, although he did say if the periods returned (which they have) they Tamoxifen would be his recommendation (which I have resumed). That said, he also feels that Tamoxifen is quite possible the most over used drug and that we will never know, how many of those women who were on it and didn't have recurrences may have not had recurrences anyways, because we can't go back in time and we can't measure things like life style changes, diet, losing weight, working out, supplements, etc because those things can't be patented like Tamoxifen or measured in mg's and therefore are rarely if ever studied to the extent that they would change the way medicine is practiced in this country. It's the big drug companies who run many of the studies out there and who are reaping the financial benefit in the long run. He is a bit of a sceptic, I guess. He sees much of medicine as being directed by economics and unfortunately it's mostly the drug companies winning that $ war. He says we still fight breast cancer the way we have for 30 years..surgery, chemo and radiation and hormone therapy yet we still have yet to find a cure. Few advances have been made in his opionion, save for Herceptin, Parp Inhibitors and yes, women still die of breast cancer. I have to say I agree with some of his points. I have a post menopausal friend who sees the same oncologist who demanded she get her hormones tested by the hospital's endocrinologist if the oncology department were so convonced she needed to be on an A.I. after her radiation treatments ended. They obliged, and guess what? She isn't producing any measurable estrogens and so she is not going to take A.I.'s. She is convinced that her cancer was the result of 10 years on hormone replacement therapy. I support her decision. It is hers to make and hers to live with. I had another friends' (civilian) oncologist tell her that Tamoxifen only gave her a 3% reduction in recurrence nad that she could make up that 3% with life style choices/changes if she desired, without all the side effects! And you are correct - everyone'scancer is very very different, although that friend had lobular ILC as well as positive nodes. (Mine were negative.) However, she is at the gym 5 - 6 days a week now working up as mighty kick-ass sweat against cancer!
We all have to do what we deem best at the time for our particular circumstances, and that course of treatment may even change over time depending on how our bodies feel, how our emotions (and fear) get involved, how much reading we do on our own, and even then it still sometimes feels like a crap shoot! There are no guarantees. In all of this I am learning not to judge my BC sisters for their choices. We all have many to make. NO two situations or even oncologists are alike. Makes me wonder what standards of care are anyways if you don't see them adhered to 100% of the time.
Here's a question...if my tumor was 90% er+ and 60% pr+, what are they doing (or rather, why aren't they doing) anything to block Progesterone???? Has anyone ever posed this question to their oncologist?
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Whether one should stop tamox before surgery seems to be an area of disagreement. My PS (who, frankly, isn't very medically oriented IMHO so I'm not sure he'd represent the mainstream of med advice) said I didn't have to stop, but others obviously get the opposite instruction. I found one British site (GPNotebook) that says for BC patients not to automatically stop tamox before surgery without considering whether the risk of blood clots outweighs the benefit of the drug for treatment of one's disease (e.g., disease severity etc). Other discussions said to stop 2 wks before "major" surgeries in which one will be laid up a while, which itself increases risk of clots, but not before "minor" surgeries. It's all as clear as mud, isn't it? A major complication to the issue is that tamoxifen and its metabolites have long half-lives in the blood (5-7 days for tamox, and 14 days for one of the metabolites), so that they only slowly disappear over several months after you stop taking them. The unanswered question is how low the concentrations need to get to before blood clot risk returns to normal. I suspect no one knows the answer to that.
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KorynH, Yep, I completely agree with you that we each have to work with our docs to make the correct choices for ourselves. Your onc & your thinking about your whole picture, with the her+ and chemo etc, makes a lot of sense, whether or not the tamox part is "standard" or not. I hope nothing I wrote suggested either you or your doc was off-base, as that wasn't my intention.
Your question about the PR+ part is interesting - from what I can tell, no one really knows what progesterone does in breast cancer, if anything. What they do know is that if you are positive for the progesterine receptor (PR+), that correlates well with strong response to hormonal therapy - tamox or AIs. More so than if you're just ER+. But that's why no one's trying to modulate your progesterone.
I have to chuckle at your onc's feelings about the big pharmas and $...I've said similar things many times myself, esp when it comes to comparing the drugs to effects of exercise, food, and lifestyle. He's certainly right that no drug co is going to pay to see if exercise does better than their drug! I think the NIH should fund more research like that but that's probably wishful thinking.
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KorynH those are some very good points your onc brought up.I think we are all just told your er+ so you have to take these drugs or reoccurance is a possibility and we are scared to not take it. I have so many se's that I don't want to continue the tamox, yet I am so afraid to stop it. I almost wish my Onc would present it to me that way so I felt I had a choice. I unfortunatly still have very healthy ovaries that are producing a lot of estrogen, so therefore I am scared to stay on it and scared to go off it. I hope I did not offend you and make you think what your doc is doing is wrong either. Like I said I am just brainwashed to the fact I must take this drug.
Does the percentage of estrogen make any difference? I am 52% estrogen+ and progeterone is 5%. My Onc says no...if you are positive, you are positive, makes no difference how much. To me it seems it should make a difference.I also don't understand why all women take the same dosage reguardless of height or weight.All other meds are dosed according to height and weight. Why not Tamox?
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As someone who was a military dependent for most of my life (from 1960-1992) I have always been given the impression that dependents can sue military docs but not military members. I do think they have some special coverage and it would be more difficult though.
As far as the headache thing goes, if I get them (which I do from time to time) I take Excedrine Migraine since mine get pretty bad. It seems to get rid of it.
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I have been on Tamox for 10 months now and I have developed an iritating dry cough. I don't have any other cough side effects and the cough is just frustrating - it only affects me 5 or 6 times a day and I spend 2 to 3 minutes coughing short sharp little coughs, I try to have a drink with me all the time and of course the cough always seems to occur just as I answer the phone or just when I am somewhere where I don't want to draw attention to myself. This has been going on about 6 weeks. I have also had a runny nose since mid March - no congestion, no other ill effects just constantly running clear fluid - can be frustrating and embarrassing. Finished chemo last June and rads at the end of July.
I would be interested in hearing if anyone else had experienced this.
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I just picked up my first prescription of tamox at 9am this morning, and here I am at 3 and still haven't taken it yet? I'm a bit scared of the unknown....
My exchange is May 25th (YIPEE!). With the surgery so close I'm worried I'll feel even more crappy while recovering. I feel like I'm such a cry baby.....UGH!0 -
Susiered, I know (well I think!) you're being sarcastic about everyone being told we're ER+, but I will note that I know several women who are ER- , so its truly not universal. :-/ I'm so sorry you're having such a tough time with tamox. It's really a catch-22, and you've stated that so well.
About the ER%, the ER% only makes a difference in that you're over the threshold to be considered positive. That threshold is surprisingly low, like 5% or possibly lower (I can't recall, so don't quote #s there). To my understanding, they haven't been able to link whether you're a likely responder to hormonal therapy to the actual level of ER, as long as you're over that threshold.
About dosage, I totally agree with you & Koryn that this one of the failings of pharma. A few drug dosages are linked to one's weight (I think infused chemos might be that way), but many like tamox are not even though it seems like it should be. It has a basis in how the drugs are tested: Based on available data, they choose a dose or two to test in their final large-scale clinical trials and if they show efficicy then that is the dose (or two) that gets approved for marketing, and that's all they're allowed to market. Theoretically they could tailor the doses in their trials to body weight or other patient attributes, but it complicates both the set-up as well as the analysis so they usually don't. Docs have discretion to prescribe it however they want, but the best data on what "works" is from the clinical trials done at specific dosages, so they don't want to mess with it either. Another catch-22.
I was interested to see someone here was using a different dose based on their cyp2d6 result - hannabearsmom I think? (Sorry, can't keep everyone straight.) Are you part of a clinical study or is this just your doc doing it on their own?As to whether you have a choice, you always have a choice. If you haven't already, ask your doc what all the possible ways are to treat your disease (including not taking anything), and how each are likely to change your chances of recurrance and survival, and they're likely side effects, and anything else you care about. There are a couple of other SERMs in place of tamox (I can't recall the names of them right now...maybe someone else can chime in), plus there are AI's if you do ovary suppression or removal first, and there's always no treatment. You deserve the full picture, so you can make good choices!! Hugs to you!!!
Ainm: The coughing sounds annoying and more. Perhaps you should see your doc to make sure it's not something else rather than an SE of tamox. If you lived here in California I'd say the runny nose is probably allergies - we've got a really high pollen season going here. But in Ireland...do you have an allergy season?
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iHEARTu, Good luck with the tamox - may you be one that it "works" for but simultaneously you have no side effects!!!!
Hugs!!!!On the practical side, did you ask your onc or your PS if you might wait to start taking it till after your surgery? We just had a big discussion on this thread the last couple days about whether to stop it or not for exchange surgery if you're already on it and some people's docs say yes, some no. But since you're not even on it yet, and your surgery is so soon, and one of its SEs is increased risk of blood clots, my brain goes to the question of whether its most reasonable for you to start afterwards, not before? Esp since you already treated your v. early stage disease aggressivly with BMX, according to your signature.
Actually, your exact situation came up yesterday...DCIS + BMX: does anyone recommend tamox for such patients? Would you be willing to share your & your docs thinking on why you should take it?
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AINM: I have only been on Tamox for about 2 months and have only experienced hot flashes from it.
As for a cough-- I developed it shortly while having RADS which I completed also about 2 months ago and was given a dose of Prednisone for 4 weeks which really seemed to help my breathing and coughing and runny nose that I developed while having Chemo.
Everyone is different-- so I'm not sure if your cough and runny nose is from RADS and Chemo-- But thought I would share my experience.
Loretta
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Thanks for the replies on the cost of Tamoxifen. If I put it through my insurance it would be a $10 copay for a 30-day supply. If I wanted a 90-day supply, I would have to do mail order through Medco at $25 for a 90-day supply. I found it's cheaper for me not to put it through insurance. I just got a 90-day supply at Rite Aid for $15.99 and they threw in a $25 giftcard for a transferred Rx. Tamoxifen is one of the generics that RA offer at a discounted price to help people who have no insurance.
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cs777 first let me apologize for not making myself more clear. When I said we are all just told we are er+ I just meant those of us who are er+. I hope that made sense. I know many women are er-. I have a friend who is triple neg. I just did not explain myself right on that.
Thanks for explaining to me about the percentage of being er+. It just seems if you have a woman who is 6 foot and 200 pounds as compared to a 5 foot 100 pound person obviosly the shorter lighter one might have worse se's. Maybe that is not the case and it would not matter, or maybe it is something in the future they will iron out.
Unfortunatly at this time my onc does not do the cyp2d6 test. He says it's too controversial. I think I am going to really stress to him how badly I want this test next time I go in. It would help me make up my mind weather to remove my ovaries and switch to an AI. I see no reason to continue to take a medication that gives me so many bad se's if i am not even metabolizing it correctly.
you also mentioned other serms in place of tamox. I have been under the impression we pre-menopausal women only have the one choice, so if anyone can chime in on that I would appreciate it.
Once again thank you for answering my questions and Once again I am sorry for the confusion in my post.Sometimes my mind is thinking it right but it just doesn't come out right. Lol!
About what we pay for Tamox. I pay either 9 or 10 dollars at rite aid, but only because they are matching what kroger advertises it all. If I don't remind them it's 25 dollars.
hugs to all,
Susan
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