Bottle o Tamoxifen
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Lala1: Thank you for the reply. I think you are right. I actually went to the ER again yesterday (this is only the second time I've ever been to the ER in my life). I was at work and my blood pressure went up to 160/97, freaked me out of course so that probably made it worse. They did tell me I was dehydrated and do have a little bit of irregular heartbeat and referred me to a Cardiologist to be on the safe side. Blood work all came back good though and did an EKG, liver and kidney functions were good as well. They did give me a saline drip and now I am just drinking tons of water and gatorade zero as well. They said the gatorade helps retain the water you drink. I stopped and got a case of water to keep at work as well. Feeling much better today.
I'm considering maybe taking the Tamoxifen every other day instead of every day at least for the next week or so just to make sure I get myself good and hydrated again. Anyone else only take it every other day or maybe cut the pill in half?
Hope everyone has a great day!
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Hi All
I'm still starring at my bottle of unopened Tamoxifen 10mg. I plan to stay on 10mg with or without my MO's blessing. About BP's. Before Cancer I was usually 110/60. Since chemo and Herceptin, I've been all over the map. 160/90, 145/80. Every once in a while I will get close to 'normal' at 120/80. Might be lack of exercise. I drink plenty of water and PowerAid. None of my Dr's seem to think there is a problem with what I call high BP. (I've had EKG's, Heart Eco's and Stress test - all OK) I think my high BP is due to Herceptin, but nobody else thinks so.0 -
rljes: I feel like Tamoxifen has something to do with mine as well and I just have this lightheaded feeling. I see the oncologist's assistant Thursday for blood work, guess I'll talk to her and see if she has any suggestions. Or maybe it's just the fact I'm going in to menopause. This feeling is very annoying and a little scary.
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I took blood pressure meds before I got cancer. The meds made we feel woozy and faint if I bent down then stood up, or squatted down and stood up quickly. Tamoxifen has not improved nor worsened my blood pressure. The wooziness continues. I keep telling my doc that maybe I'm just wired to run on a higher pressure, like a tire that should be a little over-inflated and my bp meds make me feel like a flat. He says nothing in his medical training told him that some patients should be over-inflated. Well, there's a first for everything!
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Seriously. The idea that medical training in the 21st century would be comprehensive of the entire range of human experience is such hubris that it makes me wonder if they're making the doctors study enough history of science...
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Oh I agree with all of you. I feel sometimes (most of the time) that I'm just reading from the same book as my Dr. Only, I'm reading more and he is just going on what he learned in medical school - years ago.
- I had a complete hysterectomy 25 years ago, but only started having hot flashes the day I was DX and stopped Estrace Pills. They seem to get worse. My Hot FLashes are unbearable. I wonder if they will become worse taking Tamoxifen. Maybe I'll start at 5mg.
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Since starting tamoxifen, and getting steadily worse, is this feeling of .... stupidity. No. Wait. That's not an accurate description. I used to be quick and agile, mentally. I was like a master tennis player. As life problems and situations were lobbed at me, I could leap and dive, whacking them back over the net. I could deal with things. I could think things through. I could perceive several outcomes, weigh the pros and cons. Now? Now I'm like a big, dumb brick. Struck mute and useless in the face of the demands that other people place on me. Their problems and expectations that I used to cope with. Now? It's like all the air and will to live leaves my body and my brain cells make a grinding noise as I try to think how I am going to deal with everyone's problems. I can't find the way anymore. My brain is a thick stew of stupidity. I can't think. I just want to be left alone. I want everyone to take their issues, which are not issues I created, and deal with them on their own because I cannot cope with, process, solve or even fully understand what all the bullshit is about.
I seriously believe this to be a tamoxifen side effect. I am a much more dull witted, boring and useless person than I used to be. I feel it every day. I feel alien in my own body. I see how useless I have become intellectually and it bothers the hell out of me - except not too much because I can't even think about that all that clearly without getting brain fry.
I have had the full deck of side effects. At first I lost weight but now it's coming back with a vengeance. Right in the middle. Thick in the middle, thick in the head. I have read others who said the cognitive effects of tamoxifen were unacceptable. I believe them! People ask me what I've been up to. I don't know. I literally don't know. I could have robbed a bank earlier this week, I have no memory of it and if I did rob a bank, have become too dumb to remember where I stashed the cash!
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runor - your post is both funny and disheartening. I had a brain freeze when I took Tamoxifen too. Looking back, I’m off the drug now, I also had the same feelings about wanting to lead the solitary life. I simply could not deal with other’s problems because I couldn’t even handle my own and that was a problem because I was the decision maker. My husband has always yielded to me to take care of things so just because I had BC wasn’t going to change that. It didn’t.
I did rely on friends who had had BC and several who were still going through it. I agree I think Tamoxifen was the culprit. I’m blessed my MO said I could cease and desist taking it once I reached the 5 year milestone. What a difference that made in my life. I liked the fact it supposedly kept a recurrence at bay but the side effects from the drug were unmanageable at times. I did have constant joint pain as well.
A friend who was DX years before me has to take it for 10 years although her MO said he might cut it to 8 years. Hope so for her sake.
Diane
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Hi edwards750,
After blocking the estrogen for so many years I wonder if things return to normal. I hope so because I'd hate to feel like this and like Runor mentioned for the rest of my life. Did the memory side effects go away when you stopped taking it? How about other symptoms like the dryness or sleep issues? I was handling menopause just fine but cutting off all the estrogen for years on end is a nightmare.
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I took Tamoxifen for 5 years and am now 14 months out from finishing and can say I feel much much better now. I feel better now than I did before BC. But that's also probably because I joined a gym and started working out for the first time in my life. But all my SEs from Tamoxifen are gone for the most part BUT it's taken my almost a year for that to happen. Joint pain started getting better at about 2 months and just last month has decreased to about a 1 out of 10....mostly unnoticeable. Brain fog has lifted but only down to about a 4 out 10 as opposed to an 8 and I'm not sure that will ever really get better. Could just be menopause at this point. My hair has started growing again and the yellow tint my beloved gray turned is finally growing out. The stupid weight didn't budge when I stopped Tamoxifen but 2 months ago started to come off and I'm down 7 pounds without changing anything from the last 6 years. I still have no interest in sex but again that could just be menopause too. But otherwise I feel great!!
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BP and BC treatments/drugs. I don't know if BP is affected by any cancer drugs. It seems like some cancer drugs and chemotherapy drugs carry a risk for increased heart disease risk. I refused a 3rd drug to be added to the cocktail I was going to get, because there was an increased heart risk. I was taking BP meds before the BC. What I have noticed is the BP drug, even a different generic, might make a difference. Initially I was on lisinopril (ACE inhibitor, Angiotensin-converting enzyme. ACE inhibitors help the body produce less angiotensin, which helps the blood vessels relax and open up, which, in turn, lowers blood pressure ), it brought the BP way down, but gave me a perisistent cough, an SE common for some people. When I switched to candesartin (Angiotensin II receptor blocker, angiotensin is a chemical that causes the arteries to become narrow) my BP came down even more and was more consistent, usually about 115/65 first thing in AM. The cough went away immediately. BP went up about 10 points recently, looking at the new bottle, it was a different generic, labeled that it might look a liitle different from the last one, but was the same drug. It does not seem to be the same drug for me. I called my primary about it, nurse did not seem very concerned, but said I could come in and talk about my request to have the DR prescribe a specific generic or brand name. So I am monitoring it. Do not really feel a need to see my primary, but if that is the only way to get specific Rx and my BP does not go back down to the 115/65, I might do that. DRs should be concerned about high BP, even if they do not know what is causing it, which is worth exploring. There are a variety of different classes of BP drugs https://www.heart.org/en/health-topics/high-blood-... and generics are not necesarily the same generic to generic or to brand name
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.
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BlueGirlRed you were interested in my genetic results on metabolizing Tamoxifen and it doesn't appear to be good news for me. I am unfortunately a poor to moderately poor metabolizer. The OneOme test sent me the results today ( pending review with my MO of course), but looks like I will have to try AI's . And I really didn't want to go there. I did the testing because I wanted to push for continuing on Tamoxifen vs AI for bone health. But if it really isn't working I need to get onto something that will. I hope folks reading this will consider testing for efficacy . This was a surprise for me because I foolishly thought since I was having lots of hot flashes and side effects, that perhaps I was metabolizing it really well. Huh
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Rah, this is sobering news and shakes me when I think I was putting my eggs, perhaps foolishly, into the tamoxifen basket. Do you recall your percentages on how ER and PR positive you were? On one scale I scored an 8/8 (Alred?) and on another scale was considered 100% for both ER and PR. I wonder if these percentages are in any way an indicator of tamoxifen effectiveness.
Your test shows that tamox might not be providing the protection you were hoping for. Do you know for a fact that you will be better off with an AI? Is their effectiveness more guaranteed? I assume they are metabolized in a different way.
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Runor I was highly ER and PR positive like 98% for both if I recall correctly. I will be researching the AI mechanism and trying to find out if there is any test for efficacy. I found an on line calculator that allowed you to input your two alleles for the CYP2D6 gene and there was a suggestion to consider 40 mg of tamoxifen a day if you can't do an AI. That doesn't sound like fun. I still don't exactly know what alleles I have, I need further testing to determine them. But they did list the four subtypes that needed differentiation and none of them were great. Thus the poor moderate to poor metabolizer status. I fall into a category of less than 10% of the population, so here is hoping that most of the ladies on here are in the other 90%.
That being said, if you read the literature, there is controversy on the studies correlating CYP2D6 and ability to metabolize T. Apparently some studies were done on the tumor tissue itself, versus your actual body DNA. So it is just another piece of a bigger puzzle to evaluate.
I am also splitting my 20 mg pill now. Twice a day. In my little unimaginative brain, if I am not metabolizing well, most of the drug is passing through my liver. So at least processing twice a day might give me a little more endoxifen in my system. It will be an interesting discussion with my MO next week I am sure.
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Rah-omg! This scares the hell out of me!, I have very mild SE from Tamoxifen. I'm a little forgetful and still have the urgent need to pee. ( which I'm told isn't a SE from Tamoxifen. It has NEVER been a problem before!) I see my RO on Tuesday. I see my MO in May. I'm going to ask them both about the test. Thank you for all your research and for sharing!
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Vargadoll, the urgent need to pee kicked in for me about 3 days in to taking tamoxifen and stopped about a week after I stopped it due to a terrible week-long migraine. So just chiming in to say it is def a tamox thing!
Also for the earlier question about breaking the pills in half — that’s what I am doing now with my MO’s blessing to see if 10mg is tolerable/doesn’t cause worsening migraines.
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Hi - Rah, this metabolism test, is it specific for Tamoxifen or in general how one breaks down all medications? Thx for the research.
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Beeline- thank you for sharing! It's terrible! I'm just like the commerical for bladder control! I make sure I know where the bathrooms are before I do anything else. I have found myself in a few tight spots! I am to the point of maybe taking the medication to help control the problem. I just hate to medicate a medication! My PCP offered to send me to an urologist and I said no. Last thing I want is another doctor in the mix! I have so many LE appointments that I hate to have my DH come home early to manage the kids for more appointments.
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Arrrggg - to UTI's and going to the bathroom every 30 minutes. Vargadoll - I did go to an Urologist and She couldn't find an answer or treatment. I had the same thought - too many Dr's in the mix. All my Dr's say its my "Crappy Immune System" that is causing all my problems. (I went to Urologist because I had UTI, Dbl Pneumonia and SEPSIS with 3 diff Hospital stays all within a 2 month period) That's why I hate the thought of taking Tamoxifen on April 1st.
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Rah, this is not great news. I am surprised though at the suggestion of 40 mg a day. If you can't metabolize 20mg, how is that going to get better with 40mg? That seems to make no sense at all. As it stands, there is NO RESEARCH into what is the lowest effective dose, but they seem might quick to up the dose with no real proof that it will improve your situation.
Two years ago today a doctor told me I had cancer. I sat next to Hub and felt the world fall away from beneath me. I think it's finally fading, moving into the distance and then, it's not. It's all right here again. This has been a strange, ominous day. I'll be glad to see tomorrow.
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Runor sorry for bringing you down a bit (especially on such an anniversary), I don't mean to I just think for all of us, good or bad, information is power. There is so much I don't know or understand right now. It will be an interesting convo with my MO. As I get more information I will post here. Although I am with you, I need to understand the metabolism mechanism a whole lot better. So the question kind of is do you get more coverage on more cells with a higher dose during the period of time you metabolize the pill, or is the effect better if you send a wave through your body twice a day. I don't think these pills are time release. But I don't know how long it takes them to process in the liver, etc. so more research on that. I have decided for my own sanity to decide that I have been taking an effective 5 mg dose due to my poor metabolizing of that darn 20 mg pill. No medical basis for that just how I have decided to process it. At least I have been getting something in there. And we still don't know that 5mg is perfectly fine. Maybe I will be a trailblazer who knows.
rjles - the OneOme test looks at over 300 different meds and how you process them. Tamoxifen is a big one on there. If you go on their website OneOme.org it provides a listing. But remember, we don't clearly know exactly all the ways tamoxifen is metabolized. There are some other pathways but this CYP2D6 is suspected to be the primary player because of a Mayo study. I am sure I am going to be learning a lot about it.
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Rah2464 - I'm sorry if treatment does not provide what it should. If you switch to AIs, I hope you do not experience the SEs that some of us have had. What kinds of tests are you getting for tamoxifen vs AIs? I get told it is not part of the standard for care , not whether it does any good or not. So maybe I have to pay for it . I do not know what my decision would be. I do not know what my hormone levels were before hormonal therapy and now. Presumably low since I was way past menopause. I quit AIs because of SEs and no "proof" that it was doing any good. After several months of nothing, I started tamoxifen. My scores suggested the cancer was modertely receptive to ER. So presumably lowering ER is the right thing? Oncotype testing suggested that chemo would be beneficial, but the tumor did not shrink much. So I'm not sure how much faith I have in some of these tests. Hopefully with all the information coming out on genetics, treatment can be tailored to the individual as well as the tumor, and not the tumor. My oncologist is very easy to talk to and attempts to answer all questions, so maybe she would talk about tests if I knew what to ask. When I told her that I had read about an association of tamoxifen with diabetes, she said she had not heard about that, but googled it while I was there and found the study. If I understood her response, while somthing to watch and a concern, study used existing cases, and did not set up its own study, so was not as reliable/indicitive ? http://www.theoncologypharmacist.com/breast-cancer?view=article&secid=11001:top-sec-11001&artid=14467:top-14467&catid=2585 . In 2017 I did test for diabetes and prediabetes and came out ok. But maybe I should get tested again.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.
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Rah you did not bring me down. I am very interested in everything you learn.
I keep reading right here on this forum where women taking tamoxifen get metastatic breast cancer. Maybe there are a lot more women who are poor metabolizers of this drug than we know. Maybe that accounts for having a recurrence while taking tamoxifen?
I do not know if the Oncotype test takes into account how well a person does or does not metabolize tamoxifen. BUt if it isn't checking for that well then it's kind of pointless, isn't it? If they tell you your best chances of 'beating' this disease is to take tamoxifen and then don't even know if you CAN use the tamox you take, seems a self defeating test if that's the case.
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Hi Everyone
Rah, I looked up the OneOme.org list of medications it covers. Good Grief, I have tried about 1/2 the list over the years with crazy results. I will diff take this test. Just got to find one of my Doctors that will prescribe it. I took a pain management metabolism test like this, but by the time the results came in I had moved on, so I had no one to decipher the results to me.Countdown has begun - Start Tamoxifen April 1st. I'm telling everyone so I will be held accountable!
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rljes haha I like your start date of choice! I hope you manage the T well and I hope you do get information on how you process it. My MO is on vacation this week so it will be next week before the dialogue begins with her about what I need to do next. Oh well I've been taking it this long another week will not matter.
Runor you bring up a really good point about the Oncotype test. That is tested on your tumor I believe, which may have different characteristics than your blood. It is a great question isn't it. I think there is some missing information for sure.
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my oncologist's response to my inquiry about the OneOme test:
"There has been a lot written and published about Tamoxifen and its metabolism. I have read much and listened to the experts debate this over the past 10+ years. In short, the consensus is not to test. The pharmacologic tests available are not effective in interpreting the persons individual levels. It is now known that there are multiple metabolic pathways that effect Tamoxifen; the test advertised does not do (and no available test currently does) an adequate job in this way. There is very soft data on response to treatment that the majority does not endorse.
And what if your levels were low? Would you be willing to take higher doses? Or an AI? I would not use this test to guide your treatment.
I can't talk about how the test does with other drugs. But as the buyer, please beware"
She is right in that I would not take a higher dose, nor an AI. In fact, if this test said I didn't metabolize it well then I would use that to justify why I shouldn't take it at all. I'm still on a holiday from it anyway. My 1 month holiday for January has turned into three now, and still counting. I will re-start/try a lower dose....when I can get myself to take it. It just sits there on the counter staring at me. It is hard to take something you hated - hard to reintroduce joint pain and muscle weirdness and leg swelling and moodiness/crankiness, and so on. I didn't hate it the first 1.5 years on it (didn't notice much), but the last year leading up to the holiday sucked (for lack of a better word) as if there is a build up/toxicity level.
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Bluegirlredstate, I had recently been prescribed lisinopril when my MO put me on Tamoxifen. She said I needed to switch BP meds, and I checked with the pharmacist who said the same thing. When I called the nurse practitioner in my PCP's office (who had prescribed it), she tried to argue with me. I just told her she was outvoted by experts and to change the damn prescription. So now I take Amlodipine Beslyate. And I'm looking for a new PCP, for this and many other reasons.
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I just started Tamoxifen, about 9 days ago and so far no side effect at all. I'm just taking it day by day and praying that I don't have any side effects.
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Hey Andraxo,
I was doing some googling about the genetic med testing and I basically reached that conclusion too, so it is validating to hear it from your doc!
I love the idea. But it sounds like the validation for their results are really not there yet. Ie., they can accurately tell you what's going on with your genes. But they cannot reliably tell you how your genes will affect your responses to different meds or treatment. All their studies to purportedly support that information have been very short term and/or suboptimal in other ways. From what I can tell, they've done the most research for the impact of genes on treating depression, and especially treatment-resistant depression. And even then, the overall results show that at *best*, having doctors be guided by the genetic testing in their prescribing has about a 5% impact on treatment (i.e. 5% more patients achieved relief within the tested time). Also there is a lot anecdotal evidence from physicians that they had patients doing well to drugs that the testing predicted would not be good for them, and vice versos.
I am so intrigued and love the idea of testing! I was basically ready to pull out my credit card. But I think for now it's more of a neat novelty that might prove more interesting or useful down the line, than actually a helpful part of treatment. And I can use the money better on other things
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Andraxo thank you for the information from your MO. My MO is on vacation this week, so I am interested to hear her take on my results. And based on my reading to date, yes, there is still controversy on what to measure. But boy wouldn't it be wonderful if we can get there so folks can make individually tailored decisions? I know pipe dream.
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