Bottle o Tamoxifen
Comments
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runor-- I can't say for sure why to split other than I was told that the pills carry a certain amount of the actual medication but you can't be sure that it's evenly spread throughout the pill. That's why there are no score marks on it. When a pill does have the score marks, supposedly it means that the medicine is evenly distributed throughout the pill by whatever means. My dad is a doctor and tried to explain it to me, but at the time, most everything was going over my head. Now it goes in my head but only visits for a brief moment then makes a dash for someone who's brain isn't all messed up Tamoxifen.
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Thanks so much!!! I am overweight, have gained about 20 lb since starting tamoxifen and having hysterectomy. I guess we will see with next lab work
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Lovinggrouches - my liver enzymes are elevated as well. When I was initially dx, my CT scan showed that I had a fatty liver - this was before any treatment etc. My MO said that we would just have to keep an eye on it. During chemo my liver enzymes were always slightly elevated, but even more so now that I am on Tamoxifen. All during chemo, I had pain on my right side (my cancer side) - my ribs were painful and the area over my liver so my MO ordered another CT and an ultrasound of my liver. I still had the fatty liver - but everything else was fine. Once I was off of chemo, I had no pain whatsoever - now that I am on Tamoxifen - pain is back. My MO wants me to have my ovaries removed and to switch to an AI and get off of Tamoxifen. Always something it seems.
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Just had a talk with my pharmacist who very honestly admitted that there are drug rules and package inserts that are medical advice written by lawyers, and in fact is not useful medical advice at all. It exists to absolve drug companies of liability. Package inserts are largely not made for the benefit of the patient, so read them knowing that they aren't truly for your own good, despite the appearance of good advice.
I asked outright if there was any damage to the drug or pill if I split a 20mg tamoxifen tablet on the score line provided and he said ABSOLUTELY NOT. In the case of a coated tablet, if I have a sensitive stomach and I am bothered by tamoxifen, then I might get an upset stomach by taking a pill that isn't coated. But be very, very clear and aware that an upset stomach does not alter the chemical effectiveness of the pill. Pharmacist also said that one pill might be split a little wonky so one dose you get 11 mgs and the next dose you get 9. But since tamoxifen has a long effect in the body, this is not going to have any big impact in any way.
I believe that often doctors tell us to take 20mg because they do not know better, and frankly never will. No one cares what the least effective dose is. No one is researching this. Which is terrible since there seems to be evidence that women quit or refuse this drug in huge numbers. No one is asking why or trying to change that. I have searched and all I have been able to find is that 20 mg had the least TOXICITY. That is not even close to the same as the least effective dose! Trials done on lower doses are tiny and almost impossible to find. Criminal.
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Maybe the answer to this question is obvious to everyone else but: Why would anyone want to score a pill and risk stomach upset when the pill can be administered with 10 mg tablets? Is it cheaper to buy the 20 mg tablets?
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Good point. If you want 10mg tab and can get them, then do it.
In my case my tabs are given 3 months at a time and they automatically came as 20mg tabs. It did not occur to me at that time to request the 10mg tabs. In later refills, I will. But in the meantime, is it okay to cut a pill in half without affecting its effectiveness? Yes.
Lucky for me the ONLY side effect I haven't had is stomach upset. I wash mine down with coffee. Maybe that's the trick!
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Teach70---When I first started Tamoxifen for the first few weeks I was very nauseas and had to go to the bathroom often. I eventually adjusted. I am also very sensitive to meds. I hope you can adjust too.
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Hello ladies! Just jumped on the Tamoxifen wagon last night, with my first dose.
From what I have read, fatty liver is a relatively common side effect of Tamoxifen use, from memory the possible cause is due to changes in how fatty acids are handled by the liver (so also impacts triglycerides and cholesterol in the blood stream). For instance:
https://www.ncbi.nlm.nih.gov/pubmed/12490491
There is research paper that indicates some supplements might help tamoxifen-induced liver and triglyceride derangement, but this is very preliminary research indeed:
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I saw my MO today and I told her about the CT showing the fatty liver, I prefer curvy liver but whatever lol, and she said I haven't been on it long enough to be the cause but we would keep an eye on my blood work. I had only been on Tamoxifen for just over a month when I had the CT.
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It is not okay, to cut the pill. Pharmacists write the package inserts and they are looked over by due diligence officers. There is research about dosing going on. Always speak with your doctor about altering your medication. There are reasons for dosing, including recurrence rate at lower doses or no doses. There are reasons for not splitting the pills. For any new members reading this thread, always speak with your doctor for advice. They are the ones that know you best, know your condition and any other health problems that you may have. I am doing great on Tamoxifen 10mgs 2x per day. Very tolerable.
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The issue of cutting the pill was NOT asked of my pharmacist to get his blessing on the dose. I asked if splitting the pill in any way affected its performance, degraded the integrity of the drug, gave an off balance amount of drug, etc. I wanted to know if splitting the pill harmed the pill. Did splitting the pill render the active drug tamoxifen null and void? The answer I got was no. It does not. Splitting the pill does not alter the drug.
Now, the question of what dose to take is a whole separate issue. I told the pharmacist about my dosing decisions and he spent a few minutes on his computer to see if he could come up with anything current regarding dosing (he could not find anything). I made it clear I was not seeking his blessing nor comment on my dosing decisions. And while he could not find anything that says 10 mg is just as good as 20mg, he also could not find anything that says 20mg was tested against 10 mg and 20 mg was found to be the lowest effective dose. Because that little nugget of crucial information seems to be grossly and glaringly absent from the whole tamoxifen debate (not just here but in the broader world of breast cancer treatment). We know that 20 mg is the standard dose, the always done dose, the protocol but we DO NOT KNOW IF IT IS THE BEST DOSE!
I do not agree that package inserts are written by pharmacists. If they are, they are pharmacists trained in law school. They are legal documents. Not medical documents. Ask a lawyer what he's reading when he reads an insert. He knows a liability waiver when he sees one.
Of course all people should consult their doctors before they make any medical decision. Hell, I ran straight to my doctor and asked his permission to get this cancer in the first place because god forbid I make any move without the holy blessing of his all knowing, all seeing self. The moment I got cancer my ability for critical thinking, shrewd reading and decision making got cut out during my lumpectomy.
I will TELL my doctor what I'm doing and if he has sound medical research to back up what it is he wants me to do differently, I'm all ears. But if all he can say is "we know that 20 mg works", well, that's a whole lot of 'take my word for it'. Sorry. Need something better than that to go on.
Many people are most comfortable following their doctors to the letter. I have never been a compliant patient. But each of us has to do what we feel good about doing and we have to know why. As I have said before MIchelle, it is wonderful that you are doing well on 20mg. I hope that continues for you. Of course not everyone is having that great a time of it.
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Runor, you may be interested in this old article, which suggested lower dose tamoxifen might work, but there are caveats and limitations.
https://academic.oup.com/jnci/article/95/11/766/2520250
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Not only am I doing great on Tamoxifen, I get along with and value the opinions of my healthcare staff. Since my MO knows that I have a pharmacy school education, she always shares the updates on med testing with me. Even though I am a business executive, my MO values my opinions and we work together to make the best decisions for me. I have always operated under the theory that a "team" approach is better than a "me" approach. And, the same holds true for my interactions with medical professionals. I do find, in my many years of experience, that attitude towards a subject matter, is indicative of success rate. So, for the newbies visiting this thread, keep that in mind and look for articles on attitude on breastcancer.org.
I am in the process of setting up a new calendar system, so that I can record my thoughts and progress. I encourage everyone reading this to do the same. You might want to look back some day, or lend your planner/calendar system to someone who needs to "see" how you made it through diagnosis and treatment, including Tamoxifen, with respect to breast cancer. A research firm in New York, paid me to look at my copious notes that I took during my surgery and radiation. Remember, what we go through matters, what we record matters, how we help pave the way for the future generations of breast cancer patients matters.
Hugs to all my Tamoxi-sisters.....
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I second Michelle's sentiments, for the sake of the newbies on this thread. A truly critical thinker would recognize that the 20 mg dosing recommendation is based on studies that used a scientific method--it is not a matter of simply what some MO "thinks." You are not taking the MO's word when you accept the 20 mg dose. You are accepting the truth, as we know it today, about dosing.
As I have suggested on this board, many times before, the scientific method does not produce immutable proof but rather increasing evidence, over time. Because the evidence about dosing is incomplete, particularly about lower doses, does not render the 20 mg dose as a random suggestion of a crackpot doctor. If anyone chooses an alternative dosing strategy, that does not mean that it would not be effective. It means that there is no medical evidence that supports its effectiveness. It's as simple as that! Understand your risks and make the best decision for yourself.
I, too, am a critical thinker, a trained scientific researcher, and so my perspective on the scientific method (benefits and limitations) is informed by my professional training. Believe in it or not. I respect and believe that my MO and medical team is trying to keep me alive. To fight them, as though they, rather than the insidious cancer that we've faced, are the problem seems counterproductive However, I have found that anger and rebellion, even when misdirected at a target, works as a coping mechanism for some. If so, then do what you have to do. However, as Michelle said, for the sake of newbies, I encourage you to determine from whom you will take medical advice and why, and then make your own informed decision.
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Well-stated, Scrafgal.
We do not have adequate follow-up information on 10mg dosing benefits and safety in preventing BC recurrence compared with 20mg, we have what we have. But like Runor, scientists have been asking the same questions she has for a long time (e.g., see this editorial from 1999)
http://ascopubs.org/doi/full/10.1200/jco.1999.17.9.2629
However, I have other complicated medical problems besides my little 0.9mm well-differentiated BC which was just lumpectomized, and but for innovative, “non-preferred providers” over the years who have been willing to go beyond what “evidence-based” science says they are supposed to do with me, I would not make it out of the bed each day, much less to work. I am on custom regimens for many of my drugs, and have used several drugs off-label under their supervision because the “one size fits all” medical society and government approved approaches did not work, and theirs make sense and appear to work fine. My doctors and I know we are doing things in an unusual manner, we have had long discussions about consent, and potential unknown risk. I am seeing my MO today for a third appointment (oncotype came back low), and anticipate even though radiation and either AI or tamoxifen is standard of care for my tumor type, we are likely going to forego both due to my high risks for side effects, and will do something different that makes more sense.
I do not know how the BC will play out without “standard” therapy but fortunately my MO is not concerned I will sue her if it comes back on non-standard therapy ( in the U.S. many docs have increasing concerns about being sued or sanctioned for not following usual standards, so they play it safe).
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I get along with my medical care providers. Questioning the status quo is not the same as not getting along with them or not valuing their input. In fact I said I am all ears to hear persuasive arguments either way in the tamoxifen debate. It is dead wrong to suggest that questioning your medical team is not 'getting along'. Ask questions. Demand proof. Understand why you're doing what you are doing. It is not an insult to anyone.
I agree 100% that we do NOT have the adequate proof that 10mg will work as well as 20mg. But I also have NOT found the adequate proof that says way back in the 70s, 10mgs was tested side by side with 20mgs and 20mgs was found to be better. It seems that never happened. And it's looking more and more like it never will. No one stands to gain anything from more testing - except breast cancer patients and we are not nearly as compelling to drug companies as their shareholders are. Tamoxifen is an old drug.
Scrafgal, I am not a trained researcher nor a scientist. But the conclusion that 20mg is effective is INCOMPLETE unless they can say "we tested 10mg at the same time and it did not work." So the science that says 20mgs a day works is not wrong. It's just not the whole story. It is not complete. Testing went only so far and then quit. The information that we base our dosing on today is not exhaustive research. That is not good science. Yes, 20mg a day is the dose we know about - but what we don't know about might be also as effective, only no one is looking into it. We are dosed at 20mg based on research done half right. A long time ago!
I realize that by dosing the way I am, I am taking a risk that my cancer will come back and kill me. But I read the bios of too many women, right here on this forum, who took the rads and surgery and chemo and hormonals and got cancer again anyway. You can do everything right, lose weight, quit smoking, eat kale and it can get you again. Therefore, I conclude that what we don't know is equal to what we do know. It's all a crap shoot. I am asking questions and seeking answers that do not seem to be out there. But if more doctors were more flexible with dosing and more women tried different approaches maybe more of them would stay on the drugs because the non-compliance rate and quitting rate is HIGH, despite the gains we know that can be made. That women choose to risk cancer over misery of meds is a massive problem...yet here's your 20mg, off you go, ask me no questions and I'll tell you no lies. NOT GOOD ENOUGH.
I advocate for all women to think for themselves and this does NOT mean to ignore your doctor.
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Runor,
Let me first say that I understand your frustration about the incompleteness of science, but incompleteness and lack of exhaustion in all possibilities is not the same as research that is done wrong or dead wrong. Your statement is inaccurate, in that regard, but you've acknowledged that you are not a trained researcher, so I will just leave it at that.
Second, I looked at your breast cancer story, as told here in various places. I was motivated to do so because I wondered how anyone--even someone who is facing this ugly disease--could be so very bitter about medical science. Once I read your story, I understood your perspective. To be quite honest, if things had unfolded for me in the way that things unfolded for you, given all of the statistical probabilities, I think that I would be bitter, too, despite my research training.
My only motivation in asserting my understanding of research/science is to prevent your bitterness from clouding the judgment of others here--mainly newbies--who might believe everything that you say to be absolutely true. Namely, that everything is a crap shoot. Risk and random chance are two different concepts. I just taught about these two concepts last night, and my students, thankfully, understood.
I understand that you need to voice your opinion here, as well. However, I think that the way the you express yourself is, at times. condescending to others who are also trying to simply voice their opinion. Again, I cannot judge how I might be if my story were exactly the same as yours. However, you should know that I, and others here, have stories that we could be equally shitty about. Some of us simply choose another way to try to cope and be supportive of others.
In your own way, I understand and have seen that you are trying to be supportive to others here too. I am just speaking from my vantage point when I suggest that, at times, your communication style is offensive and without sufficient cause.
I happen to be doing well on Tamoxifen and, so, I have considered leaving this thread entirely. Sometimes, I really dread reading some of your e drama-filled postings. Yet, Runor, I consider you and everyone here a fellow BC sister, despite our differences in communication styles. So, I stay. I also stay because I think that my voice might be useful too.
Best to you, Runor, and praying for all of us to recover and do well.
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re: taking 20 mg once a day or 10 mg 2x per day, I had found that tamoxifen was originally prescribed as 10 mg 2x per day and changed to 20 mg to increase compliance. I also found a bio-equivalence research study that confirmed the two as equivalent. I don't have the links on this iPad, but will try to come back and post them. I have been taking 10 mg tablets since year 2 (just finished year 4).
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Scrafgal, wow, not sure what to say. I do not recall any posts where I have blamed anyone for my cancer. No one gave it to me. It is just one of those crappy things. So to say I am 'bitter' is highbrow name calling with the effect of making my view less than your own. Not cool. You may find me dramatic, and many would agree that is an apt description of my style, even before breast cancer! So yes, I will own dramatic, effusive, sweeping, emotional, emotive and often obscene. I am all those things!
I have never said that the standard 20mg dose is wrong. It's just not the whole story. The research was done to a point, and then it quit. I feel that there is much more that we need to know. It might well be that 10mg doses are not effective for a host of reasons. But we just don't know! I understand perfectly well why doctors do not prescribe differently since there is no conclusive evidence for them to go on. There is interesting stuff in bits and pieces, but none of it large enough or done long enough to answer the hard questions. The hard questions that I have.
So Scrafgal I thank you for being the voice of reason when the tables tip towards the dramatic. When those of us embittered with battered boobs shout "Throw out your tamoxifen, toss it in the street!' we need the calm and reasonable to soothe the rampaging crowds and smooth over any tamoxifen rebellions. I am a lone rebellion of one, I guess. (even though I have not tossed my tamox in the street!)
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While I know runor doesn’t need me to defend her, I appreciate her writing style. She has a way of getting right to the heart of the matter, and I don’t think she’s trying to scare people. Perhaps she’s trying to support those who may be thinking about quitting, that maybe there’s another way, it doesn’t have to be all or nothing. We are not sheeple, we are people. I am lucky, So far my side effects are minimal and I need the security blanket. But it’s not wrong to tell even newbies it’s not a cakewalk for everyone
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Most "newbies" would know that any anti hormonal is not a cake walk. That is why they come to these particular threads and forums for support, ideas, and management of side effects. Thank you, Scrafgal, for so eloquently defining the issues on this thread. I plan to stay active, especially for the newbies, to let them know that there are those of us who work side by side with our physicians, understand what we are undertaking, and why we are undertaking the regime.
Many times in drug studies, there is a balance between effectiveness and non-reactiveness. If an organization believes that harm could come to those who receive either a placebo or knowingly low dose of the studied medication, they will stop the study. If they know harm will come to those on an ineffective dose, they will stop the study. If they find a successful dose, where the majority of patients are able to succeed, they will stop the study. There are no arbitrary dates assigned to studies, they are fluid.
Here is an excerpt of a blog from the FDA on med studies:
And so we weren't surprised by the results of a new study published in the Journal of the American Medical Association. The study found that FDA used a range of clinical trial evidence when approving 188 novel therapeutic drugs for 208 indications (uses) between 2005 and 2012. These results are entirely consistent with our regulatory mandate. We believe varying approaches to clinical studies to support drug approval is good news, not bad.
Data to support the approvals studied were based on a median of two pivotal trials per indication. A pivotal trial presents the most important data used by FDA to decide whether to approve a drug.
But when the authors looked more closely, they found that more than a third of these drugs were approved on the basis of a single pivotal clinical trial, while still other trials involved only small groups of patients for shorter durations. Of the approvals studied, the new drug was compared with existing drugs on the market only about 40 percent of the time.
The authors concluded that, based on these results, the ways in which FDA arrived at those approvals "vary widely in their thoroughness." Or, in the words of one study author, "Not all FDA approvals are created equally." Although I don't think it was actually the author's intent, a number of commentators framed this as criticism. But I would be more troubled if FDA used a rigid, "one size fits all" approach.
People with serious or life-threatening illnesses, particularly those who lack good alternatives, have told us repeatedly that they are willing to make some trade-offs in order to gain access.
And, of course, "thoroughness," such as whether a clinical trial is large enough, is in the eyes of the beholder. There is no reason to expect drugs to be tested on similar numbers of patients, regardless of the disease.
Variation in approach to clinical studies demonstrates FDA's innovative and flexible approach to drug development and approvals. Such an approach was specifically adopted by Congress in the Food and Drug Administration Modernization Act in 1997 and, most recently, in the Food and Drug Administration Safety and Innovation Act in 2012.
The FDA of today works with sponsors of new drugs to design a development and review pathway for each drug that best reflects the disease and patients it is intended to treat, the drug itself, and other treatment options. Some of the factors that enter into our calculus include whether the drug treats a rare or serious disease or addresses an unmet need and any previous knowledge we might have about the drug.
Thus, for example, FDA approved Imbruvica (ibrutinib), a treatment for mantle cell lymphoma, last year based on an "open-label, single-arm trial," which means that every patient received the treatment and both patients and researchers knew they were receiving it. The results were compared to how well the 111 participating patients had responded to previous treatment for their disease.
And Elelyso (taliglucerase alfa) – for Gaucher disease – was an orphan drug approved in 2012 based on two trials with 56 patients.
In contrast, some trials require large numbers of patients to demonstrate a drug's effects. This is often the case in studies in patients with a chronic condition such as cardiovascular disease, where larger populations are studied to capture treatment effects.
No matter what clinical trial design is chosen, the Agency always applies the same statutory approval standards of safety and efficacy to all drugs seeking to be marketed in the United States.
Increased flexibility does not mean abandoning standards, and it certainly does not mean abandoning science. Just the opposite. We need to employ the best science in ways that will increase efficiency, productivity and our shared ability to find creative solutions to the challenges that confront us.
At the end of the day, that is just smart regulation – ensuring that patients can more rapidly have access to the best that science has to offer.
Margaret A. Hamburg, M.D., is the Commissioner of the Food and Drug Administration
So, for the newbies, the majority of those who take Tamoxifen, have great relationships with their medical teams or are part of their own medical team. There are some side effects to any medication, but there are also ways to diminish side effects. If anyone has questions regarding how to cope with side effects, you can message me.
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Hmmm....I think that I just got called high brow. Wow! I think that I can finally say that this little girl from the south side of Chicago has finally made it outta the 'hood:) Progress!
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Scrafgal, I absolutely did call you highbrow! I think together we can present a wonderful blend and selection here. You be the highbrow in the books thinker and I'll be the low brow out-of-the-books thinker. You be rational thought and I'll be Question Authority. You say, ain't it great all this stuff we know! And I'll say, aIn't it awful, all this stuff we don't know! You point to where science has succeeded and I'll point to where it fails. ANd both of us can hope to god that 'newbies' can come to their own decisions and conclusions based on the evidence that is, and is not, there. Peace out. (making peace sign, could not find correct emoji)
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Scrafgal, I hardly call "Beverly Hills" aka 91st and Bell, my investment property of the 1990s, the hood. But, I do appreciate your wit and intellect. Love Chicago.
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I appreciate having all of you on here. As a newbie (I've been on this forum since May when I was prescribed but will start at the end of the month), I WANT to hear success stories. But I also appreciate the discussions of those who struggle and what they have found to help them through their journey. There are so many negatives that get reported, it's nice to find a spot where those ahead of us are saying they're doing OK, that it IS possible to not be miserable for the next 10 years. It gives me hope. I'm on too many Facebook Pages full of negativity regarding tamoxifen. I'm looking for some silver linings and have found some for now.
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Yes, Runor, Peace! Sounds like a deal!
Michelle, I know that neighborhood well. I used to go through there to dream of the day when I would be successful and have a nice house in a nice neighborhood! I spent my high school days around 61st and Wolcott (just east of Damon)--the heart of the 'hood--Englewood, to be exact! So, I guess by the time that breast cancer hit me I was already a survivor of sorts:) I do still have plenty of family in Chicago and visit often. My sister lives on North Marine Drive (around 4200 North). That's on a different planet from Englewood, and I tease her about "moving on up" all of time!
Pamela, thanks for joining the conversation. If you've been here since May, then you've heard a lot of our discussions already. I don't think I joined this thread until much later. Back in May, I was still doing chemo and had my Taxol training wheels on---hadn't even started the hell of FAC by then!
Hope works for me, but it is not without full knowledge of what it means to suffer. I just try very hard to control my thoughts, because we all know how our thoughts can spiral downward into dark places if we allow it to happen. I've been afraid of the dark ever since I was a child. So, I just can't live there!
Best to you, Pamela, as you hop on board the T-train! I stared at the bottle for a little while after I picked up the prescription and then, one day, just started!
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I'm staying right here even though I quit Tamo after only 3 years. Last pill was on Thanksgiving. Bone pain has already subsided. Still having hot flashes but had those long before b/c. I'll keep you all informed..
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Hello and Happy New Year to All -
I haven't been here in quite some time. I have a quick question about tamoxifen and hair.
I've been on it for about a year with limited side effects - the usual hot flashes, joint pain and some leg swelling. Nothing horrendous and all certainly manageable given the alternative.
In the last couple of months I'm noticing a lot of hair loss at my temples. Not cool. Like the beginning of a receding hairline. Has anyone else had this experience? I did chemo and used cold caps - I finished about a year ago. I kept about 50% of my hair with the loss being mostly around my hairline. I thought it was growing back normally and was pretty pleased, until recently. My hair has come back really thick. Of course I've read that hair thinning is a side effect of tamoxifen but I don't see anything much about receding hairlines, per se. This is not going to work
My imagination is getting the best of me over what may happen during the course of another 9-10 years. Oh my. Thanks - so much love to all. May 2018 bring us all peace, joy and health.
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Willa- I was just commenting to my husband last night how I think it’s having the Opposite effect for me. I have hair growing on my forehead! Not to mention sideburns starting...plucking has become a regular pastime. Silver lining is I suddenly have lashes like never before.It’s only been 4 months, so I too am wondering what the next 5 Years will do, I may end up a wolf woman!
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Well, time to hop into this thread, I guess. I have an appt with my MO in a couple of weeks, and she says T is the next step on my journey. I am only beginning to process what that means. The eyelashes are growing back in, and the radiation burns are healing. Each new step seems to be loaded with a basket of new anxieties. I don't really even know what to be afraid of yet.
Well, one thing -- my MO switched me from Paxil to Effexor about 6 weeks ago. I am still trying to figure out how I feel about that. I just haven't felt quite right ever since, which is frustrating. About the time everyone is expecting me to feel better, I am simply not. My PCP and I are starting to tinker with dosages to see if that could make a difference. So that is my current struggle. And then, in a couple weeks, we'll be adding something new to the little chemistry set in my bathroom drawer. Yeah, the one where I used to keep my hairbrushes and clips and pretties....
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