Bottle o Tamoxifen
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Hi Dorothy, I was started on 20 mg Tamoxifen per day. I had nausea in the beginning but when I started taking it at night it got a lot better.
I saw the study regarding a lower dose of Tamoxifen for DCIS but when I read it, the study did not seem too big. I just happened to have an appointment with my oncologist shortly after the study came out and she said the practice had discussed the study and did not want to change the practice's decision of 20 mg per day. So, I stayed on it. If I am on the 5 year plan, I am 1.5 years in. If i fi d out it's going to be 10 years, we'll see.
It's just weird that the joint pain is happening now and the thinning hair. Makes me wonder what's next!
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Lewhy when I worked up to 20mg at once my hot flashes were much worse. I opted to do 10mg in the morning and 10mg at night and now just have occasional warm flashes. It might be worth a try.
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Lewhy, I have been on 20mg for 7 years now. The joint pain seems minor even though it does ache from time to time compared to others in this forum and for those on armindex or femara.. i am doing 10 years Tamoxifen and not switching regardless of my age.. The hot flashes are the most annoying but tolerable.
Mymomsgirl I like the idea of splitting the pill in two doses. After all these years I have never thought of that. I will give that a try and maybe the hot flashes will be more gentler like yours with the split dose. Might be easier on my stomach too since I take it in the morning.
Best of luck to both of you!
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It is interesting how the timing of the meds affects different people in different ways. I am still building up to the full dose. I got to 10 mg every night without too much trouble.
So many people do better splitting their dose between morning and evening.When I tried taking extra in the morning, I had nausea 25 - 27 hours after the morning dose. I started adding an extra 1/2 pill every other night - I've done that three times. I have "warm flashes" (not really quite hot flashes) more often, but no real nausea.
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That stupid Tamoxifen. I was fine on it for the first 3 months then I dealt with the joint pain. But the nausea didn't hit till about a year into it! I was ok until then. And I had the nausea and dizziness for close to a year till I figured out that ramping up my water intake got rid of it. I found some info that indicated Tamoxifen COULD be dehydrating. It's what worked for me so you might give it a try. Everybody reacts to Tamoxifen in different ways so try different things til you hopefully find one that works.
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I have many days that I do well w/ water intake (10 - 12 cups / day) and other days that it is a good bit lower. I've never tried to correlate water intake w/ nausea. I will work hard to drink enough water the next few days and see how it helps. I did NOT drink enough today and I am a teeny bit nauseous, but just a teeny bit.
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I tried taking 10 mg in the am just to see. Had this big panic attack which was all in my head.Although I think anxiety is a true SE. I think i will stick to my 20 mg day that I have been taking for 7 years now. Three to go. Those who take 10 mg spit in two doses or even less, I wish all of you luck. I bet MDs say that a little is better than none. Maybe one day you can handle more. For me, it's 20 mg. Those warm flushes are annoying and I bought a fan and a cooling cloth toI wear for them. the joint pain in my hands and hips are annoying but tolerable. I do take Zantac before bed which helps my stomach in the AM. No pepcid AC or Tagamet. not allowed. I will try more water and more B vitamins and more magnesium. I appreciate reading all suggestions.
Thanks for the opportunity to vent. Best of luck to all of you ladies.
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Hi DorothyB, Drinking water I know can get pretty boring. I try to drink 16oz with every meal with sips in between. I started adding a slice of lemon/lime and that has helped. I take 10mg of the tamoxifen at 0830 and 10mg at 7PM, after meals, and that has been working for me. I hope your nausea gets better. I received an email from the Y for the Livestrong program. You have to have your doctor sign a medical clearance form before you start. The first day is an information day and the second is a physical assessment. https://www.livestrong.org/ymca-search for those who are also interested in this free 12 week exercise session at the Y. Most will start mid September.
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I drank 10 3/4 cups of water yesterday
I'm getting tired of having multiple "warm flashes" (and sometimes real hot flashes) every day. Menopause for me was no more than one hot flash each night and none during the day. However, I will take that over some of the other possible side effects.Last night was my 4th extra half pill at night. I'm alternating 10 mg and 15 mg at night, none in the morning. So far it is very tolerable. I am not going to try to ramp it up more until this has reached "steady state" which will be towards end of Sept.
I had my pre-meeting for LiveStrong Tuesday. I got the form for the dr to sign. She said it was fine to be my primary care regular doctor as long as she has knowledge of my condition. I found out at my last visit w/ her that she actually read my files from the MD Anderson website (I had signed her up for access). She also is a breast cancer survivor and took tamoxifen (which caused her to be so depressed that she was suicidal and had to take anti-depressent). I have an appt w/ her for next week. I'm sure she will sign form for me. The other good thing about LiveStrong is that it includes access to the Y and all free activities for the 12 weeks - so water aerobics, etc, etc.
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I think over focus on water intake muddies the picture. We need water in our system. But we get water from everything that goes in our mouth. Fruit, milk, cereal, tea, coffee. The OLD idea that tea and coffee dehydrate you is old and unsupported. At some point your body can no longer utilize the over amounts of water it gets and you spend all your time peeing. This is the problem I have. I used to be able to go all night without getting out of bed to pee. Now I sometimes get out of bed twice in a night to pee and this is not because I drink too much fluid. I think it's because the effect of the tamoxifen on my girl bits means they aren't working up to snuff anymore. Because when I do stagger into the bathroom, stubbing my toe on the dresser and stepping on the dog on the way and all that comes out is 4 tablespoons I literally say into the darkness, "you're kidding me with this shit." I think the muscle elasticity (or whatever) in my bladder has let go. This is most definitely a known side effect of tamoxifen.
If I want to not feel ragged out, I need sleep. I can function on 6 hours a night but I need it uninterrupted by pee breaks! Thus, to feel better, I have to watch my fluid intake and its timing. Yes, I need to be hydrated so that leg cramps are hopefully kept away, but not so hydrated that all I do is pee 15 drops every hour! Struggling to drink more water than you can comfortably or pleasantly bear is not a virtue! Have ice tea or hot tea or juice. It does not have to be water and you do not have to drink to the point of dread. All things in moderation (except coffee. Have lots!)
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Hi Runor, Very good point!!
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100% agree, Runor.
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Regarding leg cramps- another idea is to use a foam roller. My husband is a runner and was plagued with leg cramps at night. He uses a foam roller and he swears it has made a huge difference. So maybe a combination of adequate fluid intake and foam rolling will hel
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Gokale, please explain this foam roller thing. Is it like having someone beat you with a pool noodle?
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I'm not Gokale but yes. They're like the noodles only harder. Amazon has them, probably even the canadian version of Amazon! Or really any store with workout gear would.
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I thought I was tolerating the Tamoxifen well. I did not experience hot flashes or muscle aches. I did experience some insomnia and stomach upset. I split my dosage to 10 Mg 2x a day which seemed to help me tolerate it better. After 1.5 months I realized my GI upset was not improving. I get nausea and my colon felt like it was spasming throughout the day. I had bloodwork done by my primary care and everything looked perfect except my proteins were a little low. Of course I went online to figure out what could cause that. IBS could be the culprit. I called my MO to let them know what was going on. I realized maybe I can't live with this constant discomfort.I am now on a Tamoxifen holiday for 2 weeks and stomach is back to normal. I feel so much better overall. I have more energy too and strangely can tolerate alcohol better (secondary benefit I am not a big drinker but could barely tolerate 1 drink on Tamoxifen). I have no idea what my MO will want to do next. Maybe a different drug. I am afraid of the cancer coming back and of Mets but I feel so good without the drug.
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Here’s a foam roller at Walmart. Or if you know someone who will let you borrow theirs to try, that will give you the chance to see if it helps you.
https://www.muscleandfitness.com/workouts/leg-exercises/videos/calf-roll
Here’s a little video of using the foam roller for calf muscles.
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Yes we must drink lots of water. Tamoxifen does dehydrate you. My onco says to drink 64 ounces. Tough to do on some days. But it does help. I also mentioned to her about the nausea, too and she said I shouldn't be having that problem after a year into taking the tamoxifen. She was ready to do an upper GI for the nausea. Then asked if I have had a colonoscopy recently. Geez, really? I feel these doctors just don't take us seriously when we have these side effects. I went to see a dermo about me breaking out very sporadically and by the way I described the incidents she though it was hives. Happy Labor Day weekend.
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Have been drinking lots of water and also taking magnesium supplements, which helps some. But what is the solution for depression? It’s been 3 months PFC. Feels as though depression started kicking in a week after starting tamoxifen, also 3 months now, which seems to be getting worse.
Will it get better eventually? Or should I talk to a psychologist? Perhaps anti depressants
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Angie, my primary care physician is also a breast cancer survivor. She told me that when she took tamoxifen, it made her depressed to the point of being suicidal and she had to take anti-depressents. She said that Effexor (generic starts w/ a V) is the one that is "best" to take w/ Tamoxifen. So far (just over one month in and still building up - at 12.5 mg / day now) I haven't had bad depression.
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Angie definitely have a conversation with your MO. Tamoxifen can cause depression. Once I built up to treatment blood levels (about 3 months in) I began struggling with depression and wanting to just isolate myself from everyone. I was able to manage through it and things stabilized a little around month 11 for me. Perhaps my body adjusted somewhat although I still have to push myself a bit. I am not taking any anti depressants because of concern with how I metabolize tamoxifen. Otherwise, yeah I think I would be on Efflexor. Be careful with anti depressants because there are quite a few that don't play with with T.
Do not suffer in silence, your body's reaction is real so reach out for any medical support you need. I hope things get better for you quickly.
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Thanks DorothyB and Rah. Appointment with MO next week. Will discuss all SE’s including depression. Have also experienced anxiety attacks, especially while flying. Body and mind having a hard time adjusting to tamoxifen. I can understand why some women gave up on tamoxifen all together.
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Hi All,
I just wanted to check back in regarding joint pain. I had experienced quite a bit of joint pain for the first 6-9 months after starting Tamoxofen and then I switched to a vegan diet. Since that time, I rarely experience any joint pain!! I told my MO about it and she said it's consistent with what she has read---meat and dairy products cause inflammation and eating vegan removes those inflammatory triggers. Now my SEs are hot flashes (which I just deal with) and vaginal dryness--which had started in my perimenopause, before I began Tamox. There are lots of good resources available on vegan diets and since so many meat substitutes have come out (like the Beyond Burger and sausages and the Impossible Burger), I don't miss meat. I actually crave veggies--weird, but true.
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Hi Angie. I've been taking Tamoxifen for 3 years 10 months and for me the worst side effect is low mood and anxiety (I hesitate to say full on depression). It got so bad that I asked to be allowed to have a one month break per year (around the time when we go on holiday) which they were fine with, and it does help. Combined with recovering from the lumpectomy and radiotherapy and probably entering menapause at the same time it was really bad in the early years, so debilitating. I don't know if I have adjusted to the Tamoxifen but I have felt gradually better over the months so that it is tolerable. I am still prone to anxiety, low confidence and get waves of low mood but it's just not so bad.
I almost asked for anti-depressants but was worried about getting off them later on and the SE's they can have. Having said that some friends of mine have found anti depressants useful. I've done all the usual lifestyle stuff: no alcohol, no coffee (I have decaff), fairly healthy eating, light exercise, endless self-help books/articles, prayer, mindfulness(I could do better with that). I find a short period of deep, slow breathing helps take the edge off a wave of anxiety. I am lucky I don't have to work, I'm sure I would have to have left. Also I'm much better at saying no to things and mental self-protection (whilst still trying to do slightly scary things).
Good luck with going to the doctor with your side effects.
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Hi Catkin. Joint/ bone/ muscle pain, insomnia, hot flashes, nausea, tinnitus, and brain fog to name a few, do not even compare to the low moods and anxiety. But I’ve just read up on side effects and withdrawal symptoms of anti depressants, and I’m not sure I want to go in that direction.
May try CBD oil. Have asked MO about it in the past; since it’s not medically studied, she could not give advice on it.
Has anyone tried CBD oil to alleviate some of the side effects?
I’m willing to try anything to get me past this funk, but don’t want to compound more side effects on top of the others
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Hi AngieInAmsterdam, If you go to All Topics and scroll down to Alternative Medicine there is some information from others about CBD oil and supplements. Some of your side effects sound like what I went through with menopause. I understand what you are saying about the antidepressant. My doctor put me on a low dose, 100mg of gabapentin at night, for nerve pain from the radiation, hot flashes, and insomnia. I still try not to take it routinely. I take Omega-3 fish oil by Sports Research (Amazon). Originally I took it for dry eye caused by the Tamoxifen, but after a month I noticed it helped with my mood and maybe some bone pain. With this brand its one capsule a day.
I just saw my doctor and she thought it was fine to divide the Tamoxifen dose to 10mg in the AM and 10mg after dinner. I had just done it without checking with her first. That seems to be working for me. Good luck with your doctor's appointment. Hoping he/she can help you with the side effects.
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Hi everyone,
How soon did everyone start Tamoxifen after radiation? I just finished radiation a week ago and my MO is pushing it on me already. I have to stop taking Prozac and switch to Lexapro, too, which makes everything more complicated since Prozac can't be taken with it. I'm thinking I should make the switch before starting the Tamoxifen.
I am not looking forward to this at all. : ( I hate taking drugs and am very prone to anxiety and depression (something I've struggled with for years), so this is really upsetting me. I'm so scared how my body is going to react to this after reading about all the awful side effects. I just don't know if it's worth it.
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My MO was very accommodating. I finished radiation at the end of June. I have a race tomorrow morning, and I told him in July when I had a follow up appointment with him that (a) I didn't want to start anything until after this race, and (b) I wanted to ramp up super slowly. I have the script already filled, 10mg and I'll start w/ 5 a day to see how it goes.
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Hi Peridot180, I waited 6 weeks after radiation before starting Tamoxifen. I had a knee injury and was afraid it wouldn't heal. My daughter took Lexapro for awhile. If your doctor gives you 10mg it is double in strength like taking 20mg. Her doctor wanted her to take a very low dose to see how she would do on it. Give yourself some time to get used to the Lexapro and like edj3 said start at a low dose of Tamoxifen. Good luck to you.
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edj
Do well for you in your race tomorrow
We have been waiting for it with you this summer
I started with 5 and now take 10 MWF and 5 the other days for 50 total over the week
I'm good with that
TT
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