Bottle o Tamoxifen
Comments
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PrincessButtercup funny you should mention that, I picked up my refill and it is a different brand. Will be using tomorrow we will see.
Vampeyes I have heard of Tamoxifen causing joint pain, thankfully I don't have that yet.... However the AI is worse. I asked my oncologist about why I didn't start on the AI one being I am osteopinia, which AI is associated with bone loss, plus she did say that the AI causes a lot of joint pain as well. Tamoxifen helps with the osteopinia.
I wonder if age has anything to do with the type of side effects we are all experiencing plus, and still related to age I suppose, where we are as far as pre menopause, in menopause and post menopause.
Sometimes I think these doctors are so numb to hearing our complaints.
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I wish oncologists knew how important it is for them to acknowledge the side effects of these treatments.
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Hi Ashweb,
I also have to come off my wellbutrin because of starting tamoxifen. However, I have been on and off wellbutrin a couple of times over the years so I have personal experiences with coming off. Usually, I stopped cold turkey, either from 150xl or 300xl. Wellbutrin ins't like Effexor. As far as I know, it isn't dangerous to stop fast and I've never had problems. I'd been at 300xl and now I've done 150xl for about a week, and I'll just stop.
Your cancer center may have psychiatrists. Mine did, but it took me lots of specific advocating to get in with them.
My NPP had already added lexapro to my treatment after my initial diagnosis, since my anxiety has been terrible. I'm hoping that the lexapro can replace the wellbutrin. My medical oncologist was open to doing ovarian suppression and AI for me, if it was important for me to stay on the Wellbutrin. I really appreciated how she treated my mental health as part of my health. But my depression has been well controlled for some time so that's impacting my willingness to experiment.
If it gets worse again in the future (as it has in the past when I've been off anti depressants) and other meds aren't cutting it, it feels very reassuring to know that ovarian suppression+AI is an option.
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my MO was straight up honest with me about all the "possible" SE. I really appreciate that. I told her at the beginning that if she was not honest about everything that could go on that this "relationship " wasn't gonna work. Lol
I am not sure who mentioned the sensitivity to light but It SUCKS. My eyes are very sensitive to light.
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It was me!!! The sunlight and bright lights hurt! Thank you Shelabela fit posting! I feel like it's the tamoxifen!
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Thank you Rah2464, Vampeyes, Lala1 and Minuteatatime, for sharing your stories with me about your cysts and other GYN issues. I also appreciate your advice about exams. It has helped me so much. I sure am glad that they only found cysts, but at the same time I feel a little annoyed because my left breast also has cysts too. I guess my body just loves to form cysts to bad that aren't paying any kind of rent to live in my body. LOL
Vampeyes, Hope your US goes well next month glad you are getting checked often.
Rah2464, I am with you about not wanting to add more drugs to the mix. The less drugs messing around with your body the better. I was glad when I learned about Relizen for hot flashes. I hope it works they said it could take a month for it to work, so I hope to see some improvement soon. I hope you can get your US often. So you can have some peace of mind that things are being watched closely. Hope your hot flashes calm down a bit that sounds horrible waking up so often lack of sleep is the worst!
Lala1: Glad you were able to find a doctor that watched you carefully before jumping right into surgery. It is hard to find doctors like that take the time to listen and do all the right tests first. Thank you for your suggestion about getting baseline exams. I sure am will to get all the exams I need to make sure everything is working alright while I take Tamoxifen. Glad you were able to get t he care that you needed. How often did you get the TVUS, bone density, and eye exams when you were on Tamoxifen?
I got a bone density test this past summer and when I asked my PCP how often I should get them while on Tamoxifen she said she did not know, and when I asked my MO she said get them in another 5 years. It is confusing when different doctors tell you different things. My PCP suggested I take anti-depressions for hot flashes and my MO said to take this no hormonal supplement. I will for sure push for an eye exam even though my PCP said I don't need one.
It sure dose such that even if you take out all of your lady parts to prevent cancer from coming back there is always something left that requires an exam here and there.
Minuteatatime, So sorry to hear that you had a lot of bleeding while on Tamoxifen that must have been a bit scary. When things are normal is sure is a cause for concern. Glad you GYN stayed on top of thing regarding your care. How often are you getting checked and are some thing resolved now or is it still a work in progress?
Thank you all for your help.
Hugs,
Sara
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Sara just to show how different the two countries are and not just doctors I have not had a bone density scan yet. Now because of a, what we are assuming, pinched nerve in my neck I have had a Bone Scan and an MRI on my neck and shoulder this past week. Tamoxifen is causing my spine to ache, sometimes it's worse than that depending on what I have been doing that day. I get this week off from doctors appointments and tests - Yay!!! Next week VUS (oh joy), but better safe than sorry.
Does anyone else get spinal pain top to bottom, worse in certain areas?
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sm627--I got the TVUS every 3 months but within about a year I found my lining had thickened too much to wait any longer so about 4 or 5 in total. And then I get bone density every other year which is pretty standard on what insurance pays for. Eye exams are done once a year and every other year they do some special test that really looks into the back of my eyes. I believe that Tamoxifen can cause calcium deposits and that that's what they were looking for but I could be thinking of something else. With all these tests I lose track of what does what!!
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So yesterday I had such a hot flash returning home that I drove up the driveway to my house with all four car windows down ( it was 30 degrees F) But that wasn't cool enough. I also had to stick an arm out and down the side panel of the door to touch the cold side of the car to reset my body thermostat. I was laughing out loud at the ridiculousness of it all.
It must run in the family. My cousin , who is a 10 year survivor, tells a story about pulling off her shirt and rolling in a snowbank once when she over heated.
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Hi everyone...docs that deny anti hormone side effects are really doing us a disservice. Maybe if they could acknowledge them we could work together to find a solution and more people could actually stay on them for the recommended time! As it stands now only 40-50 percent complete the full course due to side effects. IMO that is not an effective treatment. We need more research into better treatment options.
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I think it is criminal that tamoxifen, a globally prescribed drug, is so poorly researched. The 'standard' 20mg dose is standard for no known reason. There is no information anywhere that says WHY we take that much, who needs that much and who doesn't. There are no projects looking into how much a dose could be lowered to be more tolerable yet effective at preventing a recurrence. What about intermittent usage? What if we took a 20 mg twice a week? Or once a week? There are many potential ways this drug could be tweaked to make it less miserable and yet it does not happen. This leads me to believe that the cure for cancer will only ever be found when it is proven to be profitable beyond our wildest dreams. There is no more research going on into tamoxifen because there is no money in knowing the answers and thus, it ain't gonna happen.
As miserable as this drug can be it does have a proven track record. Yet...that's not the whole story and someone, somewhere, dropped the ball on working to understand this drug and how much, or how little any woman needs, and how to determine this difference, if this difference exists. There are some of us for whom tamox is less effective. Are we tested to see if the benefit we get is worth it compared to the risks and side effects? I don't even know if such a test exists. If not, why not?
I am what you call non-compliant. I do not do what my onc tells me. Am I risking death? Hell no! I was guaranteed to die the second I was born! Am I risking a recurrence of cancer because I am not taking my full dose? Sadly, no one can say, with any authority, if I am or not! So yes, dtad, we need to do better!
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runor, totally agree, all the medicines and treatments that we receive is a maybe for doctors as well, whenever u ask a doctor how effective this medicine is, the answer is “we really don’t know”.... we need better treatments and medicine for this annoying disease
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I agree Runor, this medication has horrible side effects and even damaging ones such as growing the uterine lining thick and the reason I need surgery. Some people don't get side effects or minimal ones and are lucky. Tomaxifen has been around so many years and still there is only one way to take it and that's by ingesting a pill. Since it was seriously bothering my stomach I researched whether it was available by a patch or injections, and it isn't. I don't intend to destroy my stomach like it destroyed my uterus so I don't know what the answer is right now. I'll have to see whether I can take it long term.
The other thing that has bothered me from the beginning of treatment with this medication is that everyone is prescribed the same dosage, 20 mgs regardless of their body size, cancer size, etc., I asked the MO about this and all she says is that is the dose. I don't think they know whether recurrences are prevented from the Tamoxifen or from having radiation or whether a patient might just not get a recurrence without taking anti hormonals. It seems there's individuals' posting that never took it and years later are fine.
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Found a interesting study on low dose Tamox & topical Tamox --
Oral low dose and topical tamoxifen for breast cancer prevention: modern approaches for an old drug
Wonder when the third arm of the study comes out or if it was even undertaken? I sure wish it's in the works.
The info they present on the low dose Tamox effectiveness and also that of the topical seems very promising and I would much rather do that route than the current my MO is asking of me.
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Conclusions
Tamoxifen for use in the breast cancer prevention setting is supported by strong evidence, including phase III clinical trials. Based on clinical trial data, tamoxifen was approved for risk reduction by the US Food and Drug Administration (FDA) in 1998, and it has been endorsed for this purpose in specific categories of women by the American Society of Clinical Oncology Clinical Practice Guidelines committee [2,71,72]. In spite of these supporting factors, tamoxifen continues to have low acceptability in the community of high-risk women and their physicians, who are primarily non-oncologists [4,73-75]. This limited uptake of tamoxifen for prevention has been attributed primarily to concerns about drug toxicities and a perceived unfavorable balance between risks and benefits. These concerns about drug toxicity are exacerbated by the lack of experience with oncology drugs among the internists, gynecologists and family practitioners who generally see and counsel high-risk women. These primary care physicians are often reluctant to prescribe tamoxifen, which they perceive as a 'cancer drug' that has challenging side effects.
In order to reduce the risk of these adverse events, effective and safer drugs are being developed that could potentially replace tamoxifen as preventive agents in high-risk women. Novel endocrine agents, including both newer selective ER modulators (raloxifene) [76] and, more recently, third generation aromatase inhibitors (exemestane and anastrozole) [38,77], have been or are being evaluated in phase III clinical trials as breast cancer risk-reducing agents. All of these drugs, however, are limited to postmenopausal women, leaving tamoxifen as the only chemopreventive drug for premenopausal women who are at increased risk of breast cancer.
Both low dose tamoxifen and topical transdermal application of tamoxifen metabolites offer two promising strategies for reducing side effects relative to standard dose oral tamoxifen in the breast cancer prevention setting. Several phase II trials have demonstrated that low-dose tamoxifen retains biological activity while potentially having lower toxicity. These clinical trial findings, together with data from observational studies, suggest clinical value of low-dose tamoxifen for prevention [26,35,41,44,49]. The ongoing phase III trials will help to define more clearly the risk:benefit ratio of low-dose tamoxifen.
Topical applications are of great interest but drug formulation and dosage require close examination. Following transdermal application of 4-OHT in the studies conducted so far, very low plasma concentrations of the drug have been observed. These low plasma levels in the setting of a topical approach that bypasses first-pass metabolism in the liver suggest that there should be a reduction in systemic toxicity [58,59,65,78,79]. Together, these features strongly support the development of localized interventions for breast cancer prevention.
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I’m coming to the end of my tamoxifen 3 week vacation. For the first 5 months I was on the 20mg dose, but then self prescribed myself 10mg because I had so many SEs. I had terrifying face numbness and tingling that did go away with the lower dose, but then I started getting serious joint pains and painful vaginal dryness - lovely.
About 2 weeks into this break I started feeling really well. The joint pains are slight and the dryness is gone. For the first time since I started chemo I feel like myself - just a few pound heavier!
Still have the hot flashes that wake me up throughout the night, but that started with the chemo.
I honestly don’t know what I’m going to do next - I feel overwhelmed with the need to make a decision.
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VL22, I understand! I've said this before but I took a break from tamoxifen last winter. Around week three it stopped being fun and I started to worry. I gave myself another week off anyway, so I could enjoy feeling like my old self! If it is any consolation I've had an easier time since being back on tamoxifen It has been more manageable. (I just postponed a TVUS. I don't want to know what is happening in my uterus right now.) Good luck with your decision!0
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what otc pain reliever doesn't interfere with tamoxifen? Plain tylenol? For sore and pain in muscles.
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I take Advil and it works great for me. It is fine to take
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Rosabella - I have read that the any pain reliever OTC is fine, as long as it's not the PM kind as those have Benadryl/antihistamines in them. Those medications have been shown to reduce the efficacy of Tamoxifen.
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Nas- that’s very common to experience on tamoxifen. Curcumin supplements and/or CBD oil may help.
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Spoonie77 I had asked my oncologist about taking benadryl and she said it was fine, I guess doctors have different opinions.
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Lom-Lin ---> According to my MO, Benadryl/Antihistamines/Diphenhydramine is a P450 2D6 (CYP2D6) inhibitor. This is the enzyme pathway critical to Tamoxifen turning into it's active form and thus doing it's job in hopefully preventing a recurrence.
Perhaps, it's "ok" to take them (benadryl/PM OTC meds) 4-6 hours away from the Tamoxifen, so it has time to metabolize, IDK.
If/when I start Tamox, I'm not taking any chances and will avoid them as that is what my MO has told me to do.
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"When you take tamoxifen, your body breaks it down, converting it into the "active metabolites" that actually do what we want tamoxifen to do. An enzyme found in the liver, called P450 2D6, is responsible for making the main active metabolite. Some drugs block the activity of this enzyme. This, in turn, decreases the amount of active metabolite available to do the job.
Diphenhydramine (Benadryl) is one over the counter medication that interferes with P450 2D6. People taking tamoxifen should read the labels on any over the counter medications, looking for diphenhydramine, as this is often an ingredient in sleep aids or cold and allergy medications. Other medications that may interfere with tamoxifen include some antifungal drugs (terbinafine, or Lamasil) and cimetidine (Tagamet)."
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Pharmacogenomics of Tamoxifen in a Nutshell
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2794560/
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The Underrated Risks of Tamoxifen Drug Interactions
https://link.springer.com/article/10.1007/s13318-018-0475-9
"Note that Table 1 includes what are often considered both "strong" and "moderate" inhibitors of CYP2D6. Weak CYP2D6 inhibitors are not included. While it is true that some inhibitors of drug-metabolizing enzymes tend to be stronger than others, the extensive variability in magnitude of effect means that in one particular patient, a "moderate" inhibitor of a particular CYP enzyme may produce a greater interaction than a "strong" inhibitor in another patient....Making decisions about the clinical importance of a drug interaction based solely on the mean values from published studies is problematic. It is safest to assume, therefore, that any one of the drugs in Table 1 is capable of reducing tamoxifen efficacy in any given patient."
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Okay. I can see that. But what it does not tell us is how big a risk / threat we are facing if say, for 3 days, while in the grips of a raging cold or allergy that we take our cold medicine, in those days, what is the increased risk to our overall survival rates?
This study provides great information but ZERO context. Nothing happens in a vacuum. If you take an antihistamine everyday for 8 months straight, yeah, okay, maybe you might be putting yourself in jeopardy by rendering the tamoxifen ineffective. Or not. The above information says nothing about that either way.
So we're on this drug for the next 5 years or more. Read the bios here on this site. How many women WHILE TAKING TAMOXIFEN had a recurrence? Lots. Did they have a recurrence because they took a cough medicine? Seriously doubt it. This tells me that other forces, greater than cough medicine, determine our eventual outcome with breast cancer. Now, you can spend the rest of your life frantic that oh my god, I'm 30 minutes late taking my pill, or I forgot one day entirely, the sky is falling! the sky is falling! ... or you can find that middle ground. I aimed for that middle ground.
Believe me, I do not want to die of breast cancer, or anything else for that matter, but I also was not going to be held hostage by the frantic hope that taking this drug EXACTLY AS THE DOCTOR SAYS and avoiding all bad things EXACTLY AS THE DOCTOR SAYS and suffering miserable side effects and avoiding treating them because the doctor says it will up my cancer risk ...screw that shit. So, if I have a cold and my head is pounding and my body is aching and my husband is sleeping on the couch because I am a miserable, mucous monster, I am taking the damn cold drugs! I find NO REDEEMING QUALITY in mindless suffering in the unsupported belief that if I do everything 'right' I won't get cancer again. That belief has been proven wrong over and over and over. So ... if your vagina has dried up and your bladder is leaking because your lady hormones aren't getting to your lady parts and an applicator or two of hormones up your vagina will ease the misery, I say squirt that stuff up your hoohoo and feel better! If you have a cold and need to medicate for 3 or 4 days, do it! Out of 5 - 10 years of tamoxifen do you truly believe those few days of cold meds will be the days that kill you? That would be epic shitty bad luck, wouldn't it? Also pretty unlikely.
Information is great if it paints a picture. But lots of information, placed in no context, just words on a page, leave us floating in space frantic that anything we do is going to increase our risk. The bullet has already hit us. Take the damn Nyquil!
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Runor, I do agree with you. Just looked at that list as I didn't realize all those meds had an effect on Tomaxifen. The MO never told me what not to take with it. When I was so sick from Vertigo that not only could I not get out of bed, but couldn't sit up in bed, or turn my head ( after being on Tomaxifen for 30 days), I took Phenergen. Even if I knew about the possible interactions I still would have taken it. It doesn't make sense to be so ill and not take medication that will help get rid of the vertigo. I don't take this regularly but definitely will be asking for it after my surgery, although I'll still off the Tamoxifen now.
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Taking a Benadryl for an allergic reaction is not a problem. However, taking it for days round the clock cancels out your tamoxifen for those days. A lot of people take Benadryl daily for seasonal allergies and/or to help them sleep (it's the PM part of Advil/Tylenol/Aleve PMs). Taking it for days is where the danger lies. So, save Benadryl for when you need a quick release antihistamine due to allergic reaction to something. Use Claritin, Zyrtec, Allegra, or Xyxal for all other antihistamine needs including colds/flu & seasonal allergies. Plus these antihistamines typically cause far less drowsiness than Benadryl does.
Veeder- 10mg Meclizine is what is most commonly prescribed for vertigo unless you're experiencing nausea/vomiting so bad that you can't keep it down. The phenergan suppository is recommended til you can take the meclizine and keep it down. Vertigo can last months to years so making sure you're taking the one that doesn't interfere with tamoxifen is important. By the way, you don’t need a prescription to get meclizine...it’s the active ingredient in the 24hr less drowsy Dramamine (take 2 of them.) I've posted the studies and the explanation for why the 20mg dose is given vs prescribing it by weight several times in either this thread or the femara thread. I'll see if I can find it and link it or copy/paste it.
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Veeder- here’s the explanation on dosing by weight and a link to lower dose tamoxifen vs standard dose tamoxifen comparison study that also includes a compilation of multiple other studies looking at the same thing in the conclusions section. Bottom line is that theoretically lower dose of 10mg but not lower than that should lower recurrence risk similar to 20mg but there are no long term studies that demonstrate this to back up the theory/hypothesis. Keep in mind that every medication molecule that gets studied starts with a hypothesis on what it is expected to do. Only 1 out of 10 of those medication molecules ever make it to market. Those that don’t were either didn't do what was expected, severity of side effects outweighed the benefit, or it didn’t meet the efficacy & safety thresholds of current meds in the same class on the market today that treat the same thing.
Why isn’t tamoxifen dosed based on my weight?
There is a lot of discussion on various boards in multiple disease states about why a thin person takes the same dosage as a heavier person. Dosing of medications depends on several different factors and weight isn't always one of them. (Weight is usually a factor for children's dosing as their bodies are not fully developed and so much smaller with far less blood volume than an adult.) Let's take ibuproen or tylenol as an example: dose is based on weight in children but not adults for this very reason. We also know from phase 2 trials that there is an overdose threshold for both. But you likely don't think twice about popping 2-4 ibuprofen/2-3 tylenol at a time for a headache even though the bottle says to take 1-2. Very similar to pain relievers, when it comes to AIs and tamoxifen, weight is not considered a factor based on results from clinical trials. The AIs (as well as practically every other med on the planet) have been tested to find the dose that delivers the greatest efficacy with manageable side effects. Dosing tests are done in phase 2 clinical trials. This is where they test different doses for efficacy and analyze differences in dose vs weight, vs severity/duration of disease, etc. Phase 2 trials can be harder to come across in the public domain and may have to be requested from the pharmaceutical manufacturer. Phase 3 trials are the ones where you really see just how effective a given dose is as that's when they test for efficacy, safety and longer term outcomes. If it makes it through Phase 3 trials then you know the med is as effective/as safe as or more effective/safer than the gold standard drug that was first developed to do what the particular drug does and/or compared to placebo. If there is no gold standard drug in existence then its studied vs placebo for the desired effect with manageable side effects.
Link to lower dose studies of tamoxifen
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Runor --> I totally agree with you that taking a antihistamine once every so often or during a cold/flu/etc will DEFINITELY not cause a recurrence. Like Lula laid out, many take them on a daily basis, as do I. I need them, not for allergies, but for my Chronic Inflammatory Response Syndrome. It keeps that and my pain symptoms as a little lower level. So, if no one had mentioned the interaction between Benadryl to me, I would have been canceling out the Tamoxifen completely. Going through the SEs of Tamoxifen for nothing. Like you stated, there is nothing, not even Tamoxifen, that can guarantee we won't have to fight this beast again. So I sympathize with your anger and frustration over "information without context". I was simply trying to show the interaction between the drugs and how it works in our systems for those what were not aware, and for whom like me, rely on that medication daily. I don't want a recurrence anymore than you do, and if I take Tamoxifen, I want to be sure I'm doing all I can to get the 40-50% reduction that's offered to me. Hope you understand.
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Hi Lula73,
Thanks for the information. So far all my attacks of vertigo I have needed phenergen suppositories due to severity. Dramamine type meds have no effect. Neither does Zofran. However, mine seem to be acute and related to a sinus infection that responds to antibiotics so only have needed one dose of phenergen each time. Luckily not a long term problem or need for vertigo meds. Very strange MO did not mention any Tamoxifen meds interactions
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Any anger or frustration I feel is not with anyone who posts here. It is aimed at the writers and researchers who release this information without a real-world conclusion being added. To me, it's a job half done. Misleading.
For example, the research should have concluded with : " Taking a cold medication for a week to get you through a bad illness will not increase your risk of death by recurrence. It is reasonable and sensible to treat colds when they arise and not suffer needlessly thinking you are going to get cancer again by taking cough syrup. HOWEVER.... if you are a seasonal allergy sufferer who needs to medicate for months,this information is of special interest to you and you would be advised to seek out an alternative to Benadryl if you need to take an antihistamine for several weeks at a time". Now THAT, in my humble estimate, is information that is useful, contextual and actually makes me feel this information is for ME, the cancer patient, and not to impress other researchers!
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Thanks spoonie. No pm meds. are otc cold meds like dayquil ok? I try not to take meds but it's not fun being miserable either. Tia
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