Bottle o Tamoxifen
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Love the positive Tamoxifen posts!!!!!! Not everyone has terrible side effects and I really hate that I fed into some of the more negative posts before I started taking it. Its just not right when some posters imply or down right state that the terrible side effects are inevitable, not sure what the point is sometimes. I'm thankful that it's an option for me and I'm hoping for the best with it. Happy Thanksgiving everyone!!
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TWills, I don't think anyone has implied that bad side effects are inevitable ( at least not that I have seen) But there is no denying that many women have a terrible time on this drug. Those of us who get off without the bad SEs do have something to be grateful for compared to our sisters who struggle and suffer. My ease on this drug should never obliterate someone else's real misery.
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Runor: I see your point but I think it's one's responsibility to do everything you can do to keep it at bay. This woman NEVER took Tamoxifen and initially refused chemo. If someone was diabetic and didn't take their insulin, we would likely say they should have taken it. I get that sometimes the side effects make it undesirable to continue taking but as was stated, not everyone gets those side effects. I will say that my side effects have improved some lately. But I have kids and I couldn't imagine not doing everything I could to avoid a recurrence.
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Trvler, while I agree with you, it's also not quite fair to compare tamoxifen to insulin. While I cannot say with any certainty, I believe the failure rate of tamoxifen is much higher than insulin. Meaning, you hear a lot (at least here on this forum) of women who did everything they could and got cancer again anyway. I have not heard of diabetics, in the same numbers, taking their insulin and having it NOT deal with their diabetes.
I do not advocate NOT taking tamoxifen. But there are women on this forum who have crunched their numbers and decided the potential gain is not worth the potential harm.
I think having this disease when you have children to raise is the very definition of hell. The ONLY slightly positive note for me is that my daughter is grown. In your shoes, I would feel I had no choice but to do absolutely everything that was available to me to stay alive, side effects be damned. Your kids need you here.
Some of my first side effects have subsided a bit too, with other new ones popping up. I find my overall body pain is much higher than it has ever been before. I am not excited to live in a suit of pain, thanks to tamoxifen. But I tolerate it, do some very awkward and unattractive yoga, try to work out the kinks. And that is on half a dose!! I hope to stay on some sort of hormonal help for 5 years, since I don't want to die too badly, and like you and most others am tossing my hat in the ring of science and hoping the tamox does its thing. I hope that your body adjusts and your side effects continue to diminish. That outcome would be a blessing and I hope that is what you get. I hope it for all of us.
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Maybe a better analogy is seat belt. Fastening your seat belt doesn't gurarantee that you'll survive a car crash, but tests and trials have shown that you have a much higher chance of survival if you have your seat belt on. Tamoxifen and seat belt outcomes are based on large populations and don't give an individual's personal risk of death. So the meme that keeps coming up on this site that 'it's a crapshoot and women still recur on these drugs' is misleading and a bad understanding of some basic statistical concepts.
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Runor, if your post above was the first post I'd read about Tamoxifen after my Dr told me I could benefit from taking it, I'd be scared to death. I actually think we all agree on the basics, some of as come at it from a different perspective though. There are negative people in the world, there are positive and there are people that are in between. We have to figure out who we will be influenced by. I can't and wouldn'tsay that I won't get each and every one of those side effect that you listed but you can't say that I will either. A couple of words that were missing in the post were possible and might.
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I appreciate the positive outlook, this week especially.
I have only been on Tamoxofin since early September after finishing chemo. The main side effect I have noticed is EXTREME peach fuzz on my face. I also get the occasional dark hair, but that's not the problem. I'm talking 3mm long hairs along my jawline and cheeks (ok, I'll say it: it's like a blond beard). Anyone else have this SE? I ttribute it to Tamoxofin but maybe it's post-chemo crazy hair regrowth or maybe it has to do with my herceptin infusions. I'm considering dermaplane to get rid of it. Would appreciate any advice from you all!
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This drug is intended to reduce our risk--not take it to zero! So, my view is that recurrence does not mean that Tamoxifen has failed. I am trying to buy as much time as possible and, hopefully, die peacefully in my sleep at an older age, without having to deal with breast cancer again!
There is no cure for breast cancer. It is a sobering thought, but I have accepted that reality. A certain cure it is we all want, but we just don't have it!
Until there is a cure, we are left with trying to treat it, best we can. "Best we can" means different things to different people, based on different preference and tolerances.
Likewise, to Tryler's example, there is no cure for diabetes. Before insulin, "best we can" meant eliminating sugar from your diet which bought you a little more time, until you died shortly thereafter. People still die from diabetes and/or the consequences of having that disease. The existence of insulin shows that we are farther along with the development of drugs that delay--not eliminate--the negative impacts of diabetes--impact that include death from heart disease etc.
One day, we will be farther along with drug development for breast cancer, too. Just not today. But, the day will come.
I am sorry if this sounds too hopeful and/or sappy. However, hope and faith work for me. If something else works for any of you, that's okay too. We all just have to find a way to deal with disease best we can--whatever that means for each of us!
I appreciated a lot of what I have learned on this thread. Before I started Tamoxifen, I was worried but I felt more prepared because I had heard about all of the side effects. As it turns out, I really am doing well on it. However, that doesn't take away from the value of having heard the negative possibilities. I like being prepared! So, thank you!
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Runor: I am really sorry you are in so much pain. I totally 100% agree with you that if there is a small probability that Tamoxifen will help you, then it definitely should be considered against the negatives. Believe me, if I could get out of taking it, I would.
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Trvler, it is a weird, creaky sort of pain. I noticed a few weeks into taking tamox that moving around in bed was hard. Painful. I felt like the Tin Man on Wizard of Oz who needs an oil can on his joints to get him moving. I have always been physically active, hauling hay, chopping wood, shovelling manure, shovelling snow, piling brush, raking, mowing you get the picture. I can still do most of those things, somewhat slower, I think the radiation knocked it out of me ... but for some reason sleeping has become a very painful, miserable experience. (all the more reason to stay up and drink coffee!)
T-Sue, I too have noted some pretty epic chin hairs and one - oh my god this blew my mind - grew right out the side of my cheek, I swear it was two inches long before I noticed it! I felt it and tried to pluck it off, thinking it was a head hair, and it pulled my cheek out with it. I screamed. It was the only sensible thing to do. And then you have that instant thought, oh my god who else saw that and didn't tell me? Then I'm afraid to go out in case people point and say here comes Runor Hairy Face.
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Ditto on the fuzzy face and suit of pain. I bought a Remington epillator at Walmart that really does wonders on the peach fuzz. As for the almost constant headaches, bone pain, wobbly joints, hot flashes, bald spots, crepey, dried out skin, lack of sexual interest, weight gain, kraft disease, fatigue, insomnia.... you proabaly already guessed - I take my pill every night and wonder what normal will feel like in another 2-1/2 years (if MO says take it another 5 years - that's where I draw the line in the sand). Barely hanging in there and seriously wondering if I should try a different drug or if this is as good as it gets.
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I am still getting side effects to add to my plate. Started with vaginal discharge, now my body hurts, headaches and can't sleep.
I haven't read all the posts but has anyone had this? I think i wake up every 2 hours and takes about 1 hour to get back to sleep.
The other SE i have seem to be normal as the others on here.
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Runor, that's hilarious. I've been there - including the screaming :-)
Blownaway, thanks for the epillator recommendation. I'll suck it up and give it a try.
Wishing everyone an ease to SEs and a restful Thanksgiving!
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During my checkup today, ran into a woman diagnosed with hormone positive breast cancer. In 2000, did chemo, rads, surgery, and did not do an antihormonal. Sixteen years later, it has metastasized to her bones. She said she wishes she would have done Tamoxifen. Now she is doing Ibrance and Faslodex and was very tired with part of her face turning a gray/black color. She said if she knew then, what she knows now, it could have been a different story for her.
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Or, it could have been the exact same story for her.
This is victim blaming. This is finger pointing. This is,' you got cancer cause you didn't follow the rules, neener, neener.'I remember when I was a kid in school we used to write SSFK on our arms if we had to be anywhere near a boy. It stands for Super Sonic Flea Killer and it protects you from getting boy fleas on you. We all knew that if you were near a boy and did NOT write SSFK on your arm, you would get boy cooties. Other girls would not play with you if you had boy cooties.
It seems to me that declaring that tamoxifen (or whatever treatment) will save your life and you must Follow The Rules and only then will you be saved, is just plain bullshit. There are too many women who wrote SSFK on their arm and ended up with cooties again anyway! It is so easy to swoop in after the fact, see someone who didn't take tamoxifen and deduce that their returned cancer is 100% attributable to their non-tamoxifen taking. And that is just. Plain. Not. True. We have NO WAY of knowing that tamoxifen would have had any influence at all in their recurrence!
Now, if you want to argue that tamoxifen is the best we have to offer, if you decide to write SSFK on your arm and hope it keeps the cooties away, go for it. There is science to back up that this will help you. But we also know in many cases it does NOT help so... roll your dice and hope for a good number. But the absolute connection of no tamox and a recurrence is absolutely wrong. In fact, it's cruel.
We want to think that we have not gotten cancer again because we did everything right. We want to think that we had some influence over the vagaries and mysteries of our cells. It reassures us and makes us feel separate from those who made 'bad choices' and didn't take their pills and now they got cancer. Assigning blame provides a distance between us and them, a false security, a plea to the cancer gods, look at me, I'm doing it right, I don't have cancer back again, I AM doing it right! I knew it! Everyone else is wrong and got cancer because they are stupid and deserve it. Magic thinking. Religions are built on this one track thinking. The idea that when something bad happens to someone it's because they did something wrong to deserve it. It's the belief in a punitive, punishing, score keeping god. That is offensive to me. This disease does not care who you are or what you've done and if it wants to come back, it does. Tamoxifen or not.
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I am sad for her. We all make the best choices we can with he infrmation we have at the time. Wishing her easy tx and minimal side effects
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Right, Mollie. I think that back in the year 2000, doctors did not know as much about the significance of using anti hormonals to prevent disease progression. This women was prescribed Tamoxifen, but chose not to take it. She looked to be about 72 or 75ish, so she would have been late 50's or early 60's at diagnosis. She at least had 16 years without a disease state. It made me shudder, knowing that she was sitting right in front of me with breast cancer in her bones. My checkup went fine and I am thankful.
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Runor: That sucks! I didn't realize that kind of pain was a Tamoxifen SE. I thought it was the other ones that did that. Aromatase inhibitors? Is that what post menopause people take?
As far as sleep goes, I had been taking .5 mg of Xanax all through treatment and to get off of it, I have had some success with melatonin. For me, I don't have a hard time falling asleep, but staying asleep is hard, as I am sure you all know. So what I do it, take 3 mg at bedtime and then around 12-1 when my husband inevitably wakes me up with his snoring, I pop another 3 mg and it does seem to help. One wouldn't last me the whole night.
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I've been on Tamox for a year exactly and BCI tests show that I will not receive value in extending for another 5. My plan is to take it for another 4 years but easy for me to say in that I have not had terrible reactions to it like some women experience-- for sure I have hot flashes still (less with more exercise) and muscle aches, easier bruising, less libido. If I take Tamo in morning, it gives me headache so I take at night with 3 mg of melatonin, D3, B12 and DHEA (from algae). I take it because (according Oncotype DX) the data says it lower recurrence by 40% ( AIs would have lowered to 50% but much harsher side effects and risk to good bone health)...each evening I take it, I say thanks for helping me to starve off any BC cells left behind.
I spend a solid year reading as much as I could about my kind of cancer and how someone as healthy as me with no family history could possibly get BC...still no definitive answers but I believe that I was somehow exposed to something that altered my cells (probably all those bloody cancer-causing chemicals my parents put on our lawn in the 1970s when I was growing breasts...#banroundup!!) and then I created an environment in my body (the soil) for the cancer seed to grow-- namely, too much wine drinking, too much sitting, too little daily exercise, too much stress. So I see my BC as a divine tap on the shoulder (thank you Chris Wark at www.chrisbeatcancer.com) to make permanent changes in my life to make my body less hospitable to cancer and more supportive of my amazingly fierce immune system.
In support of my immune system (and healthy cell ecosystem), I stopped drinking any alcohol, doubled down on my plant-based whole food diet, exercise daily (even if just 20 minutes rebounding to break a sweat), meditate daily (headspace app for 10 minutes), regular acupuncture and massage (local cancer center has good rates) and I found a new job where I work with less toxic people. Also I try to monitor what I think (as you think so shall you be) and replace any thoughts of anxiety with thoughts about how strong my body is and the absolute fact that so long as I have an immune system then my own body is capable of killing any cancer cells circulating in my body. After all, I grew and delivered a perfect human being inside my body (while I was going to work, living my life) so there is no reason that I cannot create the environment within my body to keep BC from ever returning.
The way I see it, to have a different outcome (not getting cancer) I need to have a different lifestyle than I did pre-BC and every day I get up and recommit to my new cancer-free life.
Happy Thanksgiving Women!
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jpBCfree--I, too, got the BCI test which showed no value in taking Tamoxifen for another 5 years. However, I've already done 5 so I think I'm ok with being done soon. I was just wondering what you're BCI results were. I was high recurrence risk/low benefit. According to my MO, I'm low end of high risk. My percentage was 7.5%. He said very few people come back with my result so I'm looking for others with the same. Also, if I may, can I ask what your Oncotype score was?
BTW, I like your mindset. It's much like how I think of my BC diagnosis.
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I’m very interested in all the numbers everyone seems to get. My MO is not a numbers person and puts me off when I ask. She hasn’t mentioned any of these tests at all. I’d like to talk to her about them, though. So what things should I bring up?
I’m ER- and only weakly PR+. I don’t see many with my combo and I only found one small study of the effectiveness of hormonal treatments (not much). However, I’m going to take the tamoxifen for 5 years, unless some SE pops up that I can not tolerate.
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Hi lala. I've been following your posts for the last year (thanks for all the good info!). I think we have similar range kind of BC. My oncotype score was 14. BCI was 2.7% risk of late recurrence (years 5-10) and low likelihood of benefit (altho then had additional stats that show 13% recurrence after 10 years without extended endocrine therapy (as compared to 9% without endocrine therapy). I've not yet reviewed the BCI with the doctor yet so I may be not interpreting it all correctly.
I seem to recall that you were hesitating to stop taking the Tamox….for me, as soon as I'm through the 5 years, I'm off ! Tamoxifen is classified as a highly toxic form of chemotherapy and best to not forget that fact...so if it's not going to really help reduce recurrence risk then I say stop taking it. And then double down on doing things that reduce circulating estrogen (no alcohol, exercise, less body fat, no dairy) and create a healthy cell 'soil' environment. Check out Ruth Heidrick's BC story…she is a total inspiration (without use of tamoxifen)https://www.drmcdougall.com/health/education/healt...
PS. CDV425, I'm sorry but I don't know much about ER- or Her2+ BC….mine was highly ER+ hence the desire for estrogen blocking in my case. May want to check out the amazingly helpful website www.foodforbreastcancer.com...put together by a very knowledgeable fellow BC survivor.
Cheers, JP
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Michelle, I had responded earlier, then deleted, but deep in the pit of my stomach there is a tight, unhappy ball. I must speak.
Victim blaming is a thing and it should not happen, but it does. Right here. On bc.org. It goes like this, 'If only she'd done what she was told, taken the pills the Medicine Man gave her, held her tongue the right way, cut out all gluten, coffee and hair dye. If she had followed all the rules, bent to the will of the masters, HER CANCER NEVER WOULD HAVE COME BACK!"
This is, as we all know, a big, fat lie. A horrible lie. It is dipped in blame and guilt and fear and threats. Because the TRUTH is that you can do everything you're told, make every change possible and this damn filthy disease can come back again. No matter what. That is the truth. Read the stats here. It is written all over the place in black and white. Women who did it all and got cancer again anyway!
In my years on this earth I have noticed some patterns. People who are lucky, people who seem to escape the slings and arrows the rest of us get hit with, assign this luck to some great deed that they themselves are responsible for. It's a form of denial. Falsely believing that you have any influence makes you feel safe in an unsafe world. It gives you a false certainty when really, no certainty other than death and taxes exists. But the lucky, the blessed, boy they like to crow about how They Did It All Themselves With Good Choices and Right Living. Bullshit.I cannot imagine the betrayal and gut kick of placing your faith in all the treatments only to have them fail. Blind faith will walk you right of a cliff. I feel that women need to understand how science ups their odds, but does not and cannot remove uncertainty from the equation. Women need to understand the price they will pay in REAL suffering to gain MAYBE life expectancy. Eyes wide open! Science is wonderful, but it asks a HUGE sacrifice of us, that we be willing to bear side effects and permanent damage that may make our remaining years here a living hell. For some of us, it will be worth it. For others, it will not.
The TRUTH, Michelle, is that lady could have taken 5 or 10 years of tamoxifen and had the exact same outcome! It is cruel to make a post that suggests, in any way, that she is to blame. That she 'would have done things differently'. Or should have. That idea is preposterous and smacks of coercion and threat. Because the TRUTH is that science shrugs and offers us the best they have. Is it good enough? No one knows. Will it guaranteed me life? Nope. Can I suffer through this and die from breast cancer anyway? You bet. Is it just as reasonable to refuse some treatments since none of them are guaranteed anyway? Absolutely. No blame. No shame. No guarantees. Just all of us finding this disease in our breasts and hoping to god it isn't the end of us. But to say someone should have done something different and she'd be healthy now - wow, no place for that falsehood here!
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Runor, whether or not my treatment fails, is irrelevant. I am doing everything I can, which keeps me grounded in reality, to avoid progression. We do have some control over what we eat, drink, how we exercise, etc. This is a thread about Tamoxifen, not whether or not to take Tamoxifen. I think there are alternative threads for those who don't want to take anti hormonals. I am taking Tamoxifen, many others take Tamoxifen, and are doing great. I am thankful on this day, of all days, to be here and to have a medication that could help prevent a recurrence.
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Yes, this thread IS about tamoxifen. And implying that tamoxifen guarantees that your cancer never comes back belongs in the "Fairytales about Tamoxifen" thread. I haven't found that thread yet. Any discussion about this drug must also include discussion of whether or not the possible (possible, not inevitable) side effects are worth it, and that is what I see many people doing here. Kicking around this rolly polly uncertain ball of it might help, it might not help, I might have no problems on it, I might have lots of problems , will the problems be worth the uncertain outcome.... That is what we are doing. Debate. Discussion. Sharing. Research. All of it here. All of it ABOUT tamoxifen.
Your gratitude for this drug is a wonderful outlook. Those who have no problems are beacons of hope and encouragement for those just starting the Walk of Tamox. But the thinly veiled cautionary tale of a woman who should have, but didn't, and look at her now, and oh the different choices she'd make if only she'd known. Fear mongering. Threatening. Spreading of untruths. Sorry. There is NO ROOM for false promises and blaming. No room for what amounts to a lie. Because we can NEVER KNOW how tamoxifen might have helped or not. We just don't know!
Tamoxifen might be the best hope that many women, including me, have. But is it a guarantee? Hell no! No one should ever suggest that returned cancers can be blamed on not taking tamoxifen. Because that is Just. Not. The. Truth. So go ahead and express and feel your gratitude and I hope for all of us that this filthy beast stays away. But no discussion about tamoxifen should ever have the pointed blade of 'look what happens when you don't take it' thrust into the heart of the matter. That is punitive, cruel, victim blaming. I have zero patience for that shit.
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I, for one, am a very lucky person. All my life, things have just always worked out for the best for me, through no effort of my own. When BC was diagnosed, I was blownaway, hence my ID name. I've been titrating down on my daytime pain meds and will start weaning off my nighttime pain meds next week. In doing so, my pain has already doubled. Before starting Gabapentin, I was at my limit dealing with the pain that was not completely controlled with just Gabapentin so I started taking duloxetine. Combined, both did not completely alleviate the pain but it was doable. At this point, I'm taking a break from Tamo (last pill was yesterday) in an effort to determine if the pain is a Tamo s/e or CIPN which has already been diagnosed. I am 95% ER+ so once my little experiment is over, I'll be back on hormone therapy. I just need to know if this horrible all over pain is from Tamo or is chemo induced, which would mean the rest of my life instead of another 2-1/2 years.
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Runor i find your responses to Michelle very harsh. I don't read the Michelle Implied anything. I read that Michelle reported that the lady with the recurrence had some regrets about not taking tamoxifen and that Michelle is happy to have the option. I am pretty dang happy to have the option too.0
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Molliefish I am sorry if I sounded harsh. My passionate response was not aimed at Michelle personally, but rather at the notion she presented, in a round about, back handed way, by sharing that story of the woman and her regrets. The IDEA, that people who don't 'follow the rules' and get cancer again deserve their cancer ... that suggestion directly, indirectly, as hearsay or in casual conversation offends me to my very core.
It is wonderful that we have the tamoxifen option. No argument there. But we should never, for one second, fool ourselves into thinking that it's a guarantee, and that if you DON'T take it, you deserve the cancer you get. I wouldn't wish this on anyone! None of us would. I say again that I find an utter lack of humanity and support in that finger pointing, after-the-fact blaming. I would say so no matter where I heard it.
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I had dcis in right breast in 2011. Stage 0, low grade but er and pr positive with allred score of 8. I could only tolerate the tamoxifen pain a year. I gained 50lbs and it wrecked my sleep and thyroid. Now take levothyroxine. I' also type 2 diabetic now. I developed uterine polyps, heavy bleeding and genital skin rage from the tamoxifen. The gyno said tamoxifen is the gift that keeps on giving.
I' almost done yr out from diagnosis and every year spend You want respect, then give it. I haven't had it EVER. I've been blamed for something your brother and mom did REPEATEDLY! I shouldn't of been on supervision in the first place because of his lies and her enabling and lies herself...i'm here and continually bombarded of my past which YOU NOR TINA know factually anythin about. You draw your wrong conclusions and act like they're fact. YOU ARE ALWAYS WRONG. worrying it will come back because of not taking meds. Anyone in similar position??
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I had dcis in right breast in 2011. Stage 0, low grade but er and pr positive with allred score of 8. I could only tolerate the tamoxifen pain a year. I gained 50lbs and it wrecked my sleep and thyroid. Now take levothyroxine. I' also type 2 diabetic now. I developed uterine polyps, heavy bleeding and genital skin rage from the tamoxifen. The gyno said tamoxifen is the gift that keeps on giving.
I' almost 7yr out from diagnosis and every year spend months worrying it will come back because of not taking meds. Anyone in similar position??
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