Bottle 'o Tamoxifen
Comments
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Ready- yes tamoxifen could be the culprit. It could also be that you've gotten past the 'Heay lifting' of fighting BC and your body/mind are spent after “staying strong to get you through it" and emotional breakdowns whether crying, anger, etc ensue as the body/mind's way of relieving itself ofthat stress.
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Where do I start...my first time here. First to Runor about the leg pain, I take magnesium at night, and knock on wood my leg cramping is gone. I am on Tamoxifen, started August 25 of this year, and man my brain is bouncing all over the place, I can't stand it. It makes my mind race, and get off the wall things popping in my head, plus guilt but not understanding where the guilt is coming from. I haven't broke down and cried yet. Oncologist says not to drink alcohol at all if I do then just one cocktail. He also says to get my heart rate up when exercising. Neither of which he explained why. But I never asked him either, I kind of don't like him. I am in search of a breast cancer group, might have found one to attend to, I just feel like I need to relate directly to a human being. I am so unsettled. No hot flashes but it might be due to that fact that I am way past menopausal state, just guessing. Thanks for listening....
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Lin Lin - “I kind of don’t like him” - for some reason that made me laugh! I kind of don’t like my MO either, but I think I’d like her if we met under better circumstances! My mind is all over the place too - I cannot concentrate at all, which is annoying and sometimes embarrassing.
So my joint pain moves around - does anyone else have that? Usually my feet, but this week also my one hip? I’m really trying to stick to my running regimen, but it is difficult. I see people say magnesium can help, but my diet is very high in magnesium already.
I went hiking with a friend and she noted that I was moving slower than before I had cancer and when I complained about pain, she said I sounded old and that she didn’t complain like that when she was my age(she’s 5 years older). Before I could open my mouth to tell her where to shove it, my husband grabbed my arm and I let it go. She was messing around, but it pissed me off
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I don't think any of us can truly appreciate the impact this medication can have until we experience it ourselves. And know that we all will experience it differently. Makes me feel sad for my Mother In Law who was on Tamoxifen at the age of 75 - 80. She was in the beginning stages of dementia, with other health issues. But she probably couldn't voice or understand if she had any side effects from the medication itself. And I just didn't understand its potential impact. So a little guilt there. Sorry your friend didn't understand the potential emotional impact of her kidding around. Glad you could vent here because we all understand.
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Rah, I think you are so right. I think what is also an issue is that we can be having something weird or new going on and we wonder, is this tamoxifen or is this age or is this something else?
I am having an issue that I am pretty sure I can blame on tamoxifen since nothing like this has ever happened to me before. I am naturally quite limber and stretchy. My chiropractor says I'm great to work on because I pop into place with no effort. Unfortunately I also pop out of place because I am loosely connected. Could do the splits well into my 40s.
Early this spring as I was working outdoors with my husband I noticed that my lower legs, from mid-calf to ankle, were stiff. Wooden. No flex. Didn't respond like they used to. My walking got trudgy and clumsy. My lower legs cramped and seized. When I get legs cramps sometimes, like Egads says, my feet twist into impossible pretzel shapes. While I scream.
But this almost dead feeling in my lower calves is getting worse and worse and attempts to flex, mostly pointing my toes away from me brings on immediate and excruciating cramps. Standing on my tippy toes, good god, torture!
What about tamoxifen makes your limbs stop working? I am doing some very demanding physical chores lately and my body HURTS. All of it HURTS. Everything I do HURTS. I hope this aching passes in a while. But the lower calves and seized ankles never change. They are new and this is how people fall and bust their hips!
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Runor: I'm sorry to hear your having nasty leg cramps. Check out this link. It is not very helpful in terms of actual advice (in last paragraph) but might give another perspective. I think it from a Turkish university in 2016.
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So in reading about this tamoxifen, it sounds like it progressively gets worse with the side effects? I am only on my 3rd bottle, so 60 pills or 2 months new into this medication. I have pain in by breast where the surgery was and where the radiation was and keeps moving around, but just in that area.
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Lin_lin, when I saw my BS about 8 months after my lx and told her my breast and axilla were sore she did a thorough exam and then said "that tissue has been through a lot over the last few months." I took this to mean the soreness was within the range of normal reactions as past experience has shown she moves quickly when something is of concern (as in my surgery was 6 days after my diagnosis). So I suspect your breast pain has more to do with your other treatments and the healing process than with Tamoxifen. As runor said it is a challenge to identify whether new aches and pains etc. are SEs, normal aging or something else. Hope your pain gets less and less.
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Lin-Lin, I agree with Beaverntx, it is not likely that tamoxifen is causing breast pain. I also have pain in my breast, armpit (axilla), side, and ribs. It's lymphedema. Those tissues are flooded with fluid (lymph) and by the end of the day, I hurt. Sometimes my boob is hard as a rock and I have to massage and rub and stretch to get things flowing and overnight the swelling goes down a bit. But sometimes, overnight, the swelling gets worse. I never know which way it's going to go. But this problem existed before tamoxifen. This is lymphedema. It even shows on ultrasound. The tech commented "Wow, those tissues are loaded with fluid!" And it hurts.
I suggest you look up some posts on lymphedema and I'd post a link to one but I am bad at knowing how to do that. Maybe someone else can.
Thanks Catkin, I will give that a read!
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Runor you gave me such an "aha moment" this morning with the comment about how the foobs hurt and change throughout the day and with activity. I am seeing my medical massage therapist on Tuesday (I call her the foob massager) so I will discuss with her. Maybe she will have some ideas or techniques to use. I am going to her to try and loosen some of the surgery scar tissue in there but I just bet there is lymphedema as well. I am sorry for your first hand knowledge of this issue, but I am so thankful for your honesty in sharing what you know. The strength of the ladies on these forums humbles me.
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If it's lymphedema, you want to be seen by a PT/OT trained in lymphedema. There's a lot of info in the lymphedema section here in BCO. I was recently diagnosed with “edema" in the breast (caused by surgery and radiation), and the PT I spoke with on the phone said it's almost certainly lymphedema. She opined that even a lot of medical oncology personnel think lymphedema is in the arm, and it's edema every where else. My evaluation is this coming Thursday, 10/25. I've been doing some abdominal deep breathing 4-5x, a couple of times/day for the last couple of days, at the suggestion of one of the ladies here, and noticed an immediate improvement. Good luck to you!
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Runor, thanks for this info about the lymphedema, so just this morning I massaged the area and boy did the pain reduce by almost 50%!! No doctor mentioned to do this, I am surprised, they are all worried about how much to lift to cause the lymphedema, which now from this forum is not limited to the arm, that they don't say to massage the area.
Rah, yes share the techniques here from your massage therapist, I'm sure it would be help.
Rae, thanks for your info too, I do the abdominal breathing as well, I read that somewhere probably somewhere on this website.
Okay as far as the tamoxifen goes, and aside from the boob pain, it seemed I didn't word it right (I know the tamoxifen doesn't have anything to do with boob pain), does taking tamoxifen over time, do you get more and more SE's from it, or are you clear after a few months. It seems now I get anxious/ansty and the mind is all over the place, I jump on a stationary bike to work off the anxiousness/antsy.
Thankful to have found this group!
Lin
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https://www.healthline.com/health/how-to-perform-l...
Here's a link to manual lymphnode drainage (MLD). There is a lot of information online about this so if this link doesn't work for you, you can google other tips. I have lymphedema in my arm and I benefited greatly from a PT who specialized in breast cancer patients and lymphedema. She worked on my lumpectomy scar tissue and worked out the cording in my arm which reduced my pain to nothing - so really PT, exercises she assigned me, and time helped me.
Some on here have mentioned deep breathing, PT, MLD, stretches - all that really helps. Compression sleeves and other compression garments help. I am able to use KT tape on my arm to control it - thanks to my PT for showing me how to use it.
Some can get it under control and can forget about it for a long time. Some have to stay on top of it always. I am one who has to keep working with stretches, MLD, KT tape and diet to keep it under control. Fingers crossed it continues to work.
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Thanks GoKale, very helpful, nice that there were short videos. I wish my doctor would have advised me about doing these exercises.
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First time here. Diagnosed 6 weeks ago er/pr+her -. Had mastectomy 2 weeks ago. Oncologist said tamoxifen, 46, never been sick a day in my life. I’m reading all these side effects and scared as hell, wondering if it’s worth it, and realizing that my life as I knew it 6 weeks ago will never be again. WOW.
I know I’m lucky, only stage one, no chemo but this still sucks. Scared to start taking it, and scared not to.
Thank you all for your advice and posts. Been quietly reading since diagnosis. Good luck to us all
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Melanie1111: I am right there with you. Stage one and was told I did not even qualify for an onc score, 2 mm of invasive and the rest DCIS. I have been on tamoxifen for 4 months. I have not experienced any of the physical side effects, but feel more tired and short tempered. I am trying to change my perspective and be more positive in mind set. My husband and I have decided to give it a year, if it is difficult for my family to be around me than I will most likely stop, but am tying many different natural ways to increase serotonin and dopamine. Changed diet, more excercise, more outside time, and meditation. A lot of folks do just fine on the medication. I think those who have side effects are a little more verbal. It definitely is a personal decision and everyone’s perspective is different
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Lin-Lin, I have been on tamoxifen 14 months now. Here is what I find: sometimes symptoms come in waves. I will have several weeks of terrible night sweats. Then none. I will have terrorizing leg cramps for three weeks. Then they quit. I'll be constipated randomly for a week, then I'm fine for a couple months until it happens again. My falling out hair and chin hairs like cables are pretty steady though. Honest, finding one of those chin hairs and giving it a twang with your fingernail is like plucking a guitar string! I never find them at home in the bathroom, either. No! I find them in the truck, just before I have to go see someone, that's when I feel one of those thick monsters sticking out like a big, black spider leg. And I never have a tweezer or a mirror. So you try burning it off with a lighter, which is a seriously bad idea. Then HUb asks what you're doing and you point at your chin hair all in a panic and he squints and looks and turns your face this way and that and says he can't see anything, you're imagining it, you look fine, wait, HOLY SHIT! will you look at the size of that thing! And then you cry.
Yeah. Tamoxifen. You never know what's coming!
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thank you all for your support this past week with all my emotional ups and downs it means so much to me. Sending you all lots of hugs and love and hope you have a good week. Tamoxifen side effects took a backseat today because PMS was in the driver's seat. LOL
So I met with a new gynecologist this past week. She asked how long I was on tamoxifen for she said that some of her patients are on it for their whole life. I thought to myself would want to be on this s*** for their whole life?? 5 years is long enough for me. Have any of your doctors mentioned taking tamoxifen for your entire life.
Cheryl I couldn't find the gas mask. But I think I found something else that might keep the preschool kid germs off me. I plan to put this around every child that coughs on me.
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sm627 - my onc said I should be on ten years - it’s been almost 8 months and I think of quitting every day! As I sit here now I am in a pool of sweat!
As rumor said, I feel the side effects come in waves. I’ll have a day where I think that maybe I’m on the other side of them, but then BAM!
I didn’t get an Oncotype score because I also had a TN tumor which automatically signed me up for chemo. When I plug my stats for the grade ER+ tumor in Predict, I get the results that in 15 years taking tamoxifen helps me by like 1%. But this only shows mortality rates, not recurrence. So why am I taking this crap? I struggle with it a lot.
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VL22- you take it to keep the recurrence from happening because if it does recur it’s typically at a different stage which changes those mortality rates significantly. Tamoxifen reduces risk of recurrence by about 50% during the years you actively take it and by about 33% for the 5 years after you stop taking it. My MO recently upped my Wellbutrin from the 150 I’ve been taking for years to the 300 mg dose to help with libido and hot flashes. Hot flashes were worse for about 10 days then all of a sudden they decreased in number and severity. Ask your MO or PCP for help with the flashes. If you’re having mood swings or seem to have a shorter fuse of late he can help with that too.
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Runor, ah that explains a few things, you just never know what side effect is going to pop up on you taking this medication. One day I feel like conquering the world and the next I just want to be left alone.
I went to a Wellness House here in Illinois and joined a breast cancer group, a very nice bunch of ladies with lots of info to share, that helped and then got me sad.
Anyone have any SEs from Tamoxifen with your eyes?
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I haven't been here in several weeks and I am terribly behind! I'll try to summarize where I am briefly , but I'm not promising.
I was only on tamoxifen for 5 days before I started getting what felt like menstrual cramps. I'm post menopausal for many years. Each day they got worse. Finally, after 5 days of pain, called my mo. Nurse said to stop and scheduled me for an ultrasound. After about 10 days off, the cramps stopped. Ultrasound essentially normal, with upper limit of uterine lining thickness. Sent to a new gyn, who said she's never heard of cramping as a side effect of tamoxifen. Exam showed nothing abnormal. Advised to try the tamoxifen again and to try and tolerate the pain if it returned because sometimes the body will get used to it.
Today is day 5 back on the tamoxifen. I didn't even realize it until... you guessed it... cramps started again. I am taking Advil and trying to suck it up. I don't think that daily all day pain should be part of the deal.
Lin Lin, you asked about eyes. On the other AIs, I got dry eyes which resulted in double vision in one eye. Drops at night and a night mask helped some.
I forgot who here, but they recommended calcium gluconate rather than calcium citrate. I actually did some research which said calcium malate is best for calcium absorption and osteoporosis as well as high BP and high cholesterol. I still have a bottle of liquid magnesium and calcium citrate that I have to use up. I don't have any intestinal problems on it. I saved the article I read explaining it all, but I can't find it. 😕
I'll have to read all the posts and reply... Just wanted to update.
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Lin-Lin my eyesight has gotten TERRIBLE! To be fair, prior to this cancer crap I had the typical after 40 decline in my vision. But the failing eyesight since taking tamox is like a runaway train. I remember eye doc saying not to get glasses yet, to ride it out with cheater glasses until the decline stopped - yeah, where? Total blindness? I have cheaters everywhere and hear myself asking people in grocery stores or drugstores, dear, can you read this for me? Oh my god.
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my eyesight has gotten worse also.
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So how soon do you see the decline in the eyes? I have been wearing glasses since the age of 10 and am farsighted, which typically people get as they age. Are cataracts part of some of the side effects? I went to a support group and a woman there had a different side effect from it, not dry or cataracts but something she got that ended up in the eye, and for the life of me I can't remember what it was, so not helpful here. LOL.
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Ok, so I have a question. Let's say you start Tamoxifen 4 years before you would have gone through menopause. So as time passes and you get closer to menopause, should the side effects (hot flashes) wear off because the difference between your natural estrogen level and you tamoxifen induced estrogen level grows smaller? Does this make sense to ANYONE?
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Trvler, I think I understand your question. I think.
How to give you my non-scientific, unresearched, not valid opinion and make sense?
I think that whether you are making lots of estrogen, or only a little estrogen, tamoxifen allows your body to use NO (or close to none) estrogen. Whether you produce estrogen or don't, tamox keeps you at the same usage level (zero).
If that is the case then no, natural menopause is not going to lessen the side effects. Tamoxifen does not stop you from producing hormones, it blocks some cells ability to use that estrogen. So how much you make, or don't, is not the issue.
Having said that, for reasons I am not clear on, postmenopausal women are often put on drugs other than tamoxifen. So maybe a reduction in estrogen production means that you change meds to a more effective one, but it does not mean that the side effects of tamoxifen become less.
I have read this post. It makes no sense. Ignore it.
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runor, you did a good job on that explanation! I’ll clarify the fuzzy parts... tamoxifen attaches to the estrogen receptor on specific cells in your body preventing estrogen from accessing the receptor and entering the cell. It does not do this on all cells in the body, just specific ones (that’s why the uterine lining thing is an issue). And because it’s blocking that estrogen, you likely will find that your blood estrogen levels will rise as it’s not being utilized at the same rate anymore. This rise does not overcome the action of tamoxifen but may make your blood stickier and in a handful of cases result in blood clots (hence the blood clot warning in the label). With the blocking you will get some side effects of menopause but not all of them because of the cell specific way it works. Bone loss seen in menopause is a prime example as tamoxifen does not promote bone loss. So in the end some symptoms may pear at menopause that weren’t there before, some may disappear, and some may stay the same.
The difference between tamoxifen and AIs: First we have to understand where the estrogen comes from - 80% of our estrogen comes from our ovaries, 20% of our estrogen comes from a process of androgens (released by our adrenal glands) being converted to estrogen in our fat cells by an enzyme called aromatase. Now we look at how each medication class works: tamoxifen blocks estrogen receptors; AIs inhibit/prevent aromatase from working to convert the androgens to estrogen. Since AIs only stop androgen conversion and does not impact ovarian release or action of ovarian estrogen, it is only effective in post-menopausal women.
Why use an AI vs tamoxifen? In several head to head clinical trials, AIs were shown to be significantly more effective than tamoxifen by about 13% in post-menopausal women. This was duplicated in a subsequent study in ladies who had their ovarian action suppressed who took an AI as well. With new data showing 10 year use of tamoxifen/AI to be more effective than 5years, these studies will be relevant to more and more women. Hope this helps!
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Okay so today Tamoxifen wasn't to bad. I hope it is on its best behavior for tomorrow morning when I go in for my breast MRI and then the following week when I have my pelvic exam.
Oh joy these tests sure are fun NOT LOL
Please send good thoughts to the boob gods for me.
Hope you all are doing well.
Hugs and Love to all,
Sara
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Hey Sara, so glad that the big T was behaving for once, fingers crossed that this turns into a pattern for you. Good thoughts have been sent! xxx
Runor you crack me up! Do you have a blog, if not you should start one.
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