"Tamoxifen Road" - Support and Encouragement
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Thanks! I already have vascular dilation (pre-cancer) - which makes me a little concerned about DVT.
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Dorothy, go slow, if needed. There is no rush because this is a long term project!!!!
This is with your MO’s okay, of course0 -
Michele, I don't have the MO's approval - he wants me to jump in w/ 20 mg once a day and then deal w/ it if I get side effects that I can't handle. On the other hand, he is leaving and going w/ a different cancer center (different company, not just location change) in a couple of weeks so won't see him again.
I took 10 mg every evening starting Aug 1st, but also took an additional 10 mg yesterday morning. I had a little nausea this morning - like the radiation nausea, it was enough to be uncomfortable, but could still eat whatever, etc. I will take an extra 10 mg again tomorrow morning unless I have morning nausea again.
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I started 20 mg Tamoxifin 2 weeks ago, so far so good. I did have a little nausea the first week but none since then. I have already tried all three of the aromatase inhibitors so sure hoping the Tamoxifin will work for me. Good luck to all of us
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I also had a little nausea the first week and not since then, so I think it will pass.
Week 1 on tamoxifen:
8 months in to taking tamoxifen:
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Hi all,
I start today. Or tomorrow, can't decide. But I'm picking up today. I'm going to try the 20mg from the get go and see how it goes.
I do have a question please: should I take it before bed or in the morning do you think?
Thanks much.
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Hello to everyone just getting started on Tamoxifen! With your MO’s permission, go at your own pace for ramping up to a therapeutic dose. I take mine at night, because it helps me sleep. I just had my 3rd anniversary of my diagnosis/biopsy on August 1,2,3, because that is how it rolled out.
There is no doubt that just hearing the words “breast cancer” would create such an incomprehensible fear. If I knew then, what I know now, I would say to not get overwhelmed, and break the pieces into managable parts. I did that for myself, but with an underlying sense of dread. I had fear at each stage, surgery, radiation, decision about endocrine therapy, hysterectomy, etc. The fear aspect made it 10 times worse that it actually was.
Tamoxifen, for me, is totally doable, with minimal issues and I am thankful each day
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I take tamoxifen at night, 8pm, partly because when I was entering this journey myself, I connected with michelle_in_cornland as she is someone who has been tolerating tamoxifen really well and followed her tips on how to ease myself into it, and 7 months later I’m one of those tolerating it well too.
There are actually a group of us who (in another thread together) all started at a lower dosage and worked our way up or stayed at the lower dosage (due to some recent studies indicating 5mg we’re just as effective as 20mg for early stage cases and with fewer side effects) and we’ve all been tolerating tamoxifen well!
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I take it at night, although my MO said morning or night it would not make a difference.
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Thank you very much. I’ll start tonight. My MO wants me to go the other way, start at 20mg and work down if necessary.
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Mom2bunky
I started 20 mg Tamoxifin 15 days ago, after trying all 3 of the aromatase inhibits over the last 20 months with terrible side effects. So far, I realize it's early, but so far so good. I started taking it at night the first week but woke up several times at night and couldn't get back to sleep so started taking it in the morning and I am sleeping much better. The only other side effect I have had so far is slight nausea the first few days but that has resolved. My oncologist said I could ease into it, 5 to 10 mg a day or 20 mg every other day but he didn't think it would make much difference. So far I am doing fine on the 20 mg but I can always back it down if I start having bothersome side effects. Good luck to you as you start this part of your treatment.
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Hi all,
I have been on Anastrazole since the end of February, but struggling with bone and joint pain, difficulty walking up and down stairs as a result, so my doctor has taken me off them and swapping to Tamoxifen, after a month off any pills first.
Feeling excited in a way if it works to stop the pains, but a bit nervous about whether I will have a new set of problems! The doc said depression is more common with Tamoxifen than Anastrazole, so that is scaring me.
Hope to hear some good news stories about everyone's Tamoxifen journey.
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Well, surprise surprise. I took it for the first time last night and slept better than I have in weeks. Go figure. I'm not going to jinx it by saying it's the tamoxifen, but I'll take it for now.
Thank you Goldfish, I hope I have your luck. Good luck Pooh!
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I was afraid to start Tamoxifen. I had read so much about terrible SEs that I tried to talk myself, and my doctors out of it. Across the board they recommended taking it and just see how it goes. I could stop whenever I wanted to. I washed down that first 20 mg dose with a large glass of wine (not recommended). Long story short......I have 5 months left and I'm actually getting nervous about stopping it. It's become my last safety line so to speak. My only SEe have been dry skin and eyes. For me, it was the right move.
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MagicalBean thanks for the encouraging story, good to hear you haven't had too many SE's.
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Anytime,Worry. It amazing that there are so many different treatment options and so many reactions to them. It just shouldn't be this difficult. Keep us updated and blessings to you.
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I have stopped taking Tamoxifen as of last Friday. I thought 10 mg was going to be tolerable, but there are just too many SE's for me - my oncologist agreed it was time to stop. I will be having a blood draw sometime soon to determine what my estrogen level is and how to proceed. Ugh.
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AC1965 - curious which of the many side effects you were getting.
As of last night, I've built up to having 90% of what would be in my system if I were taking 10 mg of tamoxifen every day for months. I've taken 12 pills in the last 10 days (not counting today as I take it at night).
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DorothyB,
Severe brain fog, confusion, panic attacks (while driving to and from work, and I live less than 10 minutes away), angry outbursts and other personality changes, joint pain all over my body and general fatigue, headaches, and lower abdominal pressure/pain. I also had hot flashes, but they weren't intolerable. I started at 20 mg daily and immediately felt horrible, so I went down to 10 mg, which at first felt better, but when it built back up in my system all of the SE's came back ten-fold. My body just doesn't like it.
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I think if I had those side effects, I would be stopping (or at least going down to every other day).
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does anyone know if you start with the daily 20mg dose how long it takes to get up to the maximum dose in your system.
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This website https://www.drugs.com/pro/tamoxifen.html says "After initiation of therapy, steady-state concentrations for Tamoxifen are achieved in about 4 weeks and steady-state concentrations for N-desmethyl Tamoxifen are achieved in about 8 weeks, suggesting a half-life of approximately 14 days for this metabolite."
Half-life of tamoxifen itself is about 7 days. The metabolite takes longer to reach peak (8 weeks vs 4 weeks
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I hadno idea tamoxifen has these kind of side effects! I’m bummed that at 45 I have to go that instead of Fermara due to not being through menopause, because for infertility treatment a decade ago, I was put on Fermara and I remember saying I felt better on it than I ever had felt in my adult life! (I Have pcos)
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I just don’t tolerate it well. Some have taken it successfully with few SE’s.
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Saw my oncologist, said my aches and pains could very well be from the tamoxifen. Gave me coping ideas. It was nice to not hear it completely denied. Doesn't fix it, but helps my frame of mind as I struggle with this completely necessary medication.
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I'm 3 years in. Tried letrozole for 5 weeks in 2017 and it was very debilitating. Luckily my ses on Tamoxifen haven't been bad so I'm on it. I had never heard of slowly going on it. Post menopausal I already had hot flashes from time to time. It increased. I had pelvic cramps at times. And I developed more fatigue. After a year or 2 in, my hot flushes have decreased. In fact if I get one, it's now a shorter warm one. Pelvic cramps are rare. Fatigue is still there but that's doable. With my profile I'm glad T isn't bad on me. I have heard ses can happen at any point in taking this but I'm pretty committed to the 10 year + plan since I don't tolerate AIs.
I wasn't afraid to jump in. It's like any med that you just don't know how it'll effect you until you try. But I'm one example that by staying on it, ses got better.
Forgot.... I take celexa. It may have a mild interaction with T. So mo told me to take celexa in am and T in pm. Check out the list of meds that interferes with T.
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Hi togethertolearn - I'm 44, just one year younger than you, and I wanted to provide reassurance that not all of us on tamoxifen experience SEs. I've been on it for 8 months (granted at a 10mg dose which my MO is fine with so far) and I've been tolerating it well, no discernable SE's. I know several others, both personally and through these boards, who are just fine on tamoxifen.
I think we all have different experiences and I agree with Artista928 that you don't know what side of the coin you will be on until you try. I was super nervous about it before I started and it ended up being a much smoother ride than I anticipated!
Because I was nervous about side effects, I did a lot of research on how to combat SEs if they came about. So who knows, maybe keeping up with yoga and dancing and stretching and working out has helped combat joint pain? I just don't have any joint pain. I actually sleep better on tamoxifen when I used to be a night owl, I don't know if that's fatigue but its working out for me to not stay up until the wee hours of the morning and during the day I feel fine, not fatigued. The 'time of month' is less regular but still there.
Anyways, I hope that helps. And I'm not discounting anyone experiencing side effects - they can be very real, and we just don't know how our bodies will react until we try, but I wanted to be a voice for the other side for the sake of reassurance, that there are plenty of women taking tamoxifen who are just fine on it, and able to still feel like ourselves.
My reco is to just give it a try, maybe you will tolerate it fine. And if you don't, you can always adjust to try something else.
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pebbles - that is good to know that there’s other options if needed. I don’t have any peers who have gone through this so i find everyone onhere so helpful!!
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questions about nausea - I have been taking tamoxifen for 15 days now (tonight will be 16 days).
I researched and calculated since that is my personality. The drug itself has a half-life of about 7 days and the metabolite has a half-life of about 14 days. It takes about 4 weeks of taking 10 mg a day to reach the steady state amount of tamoxifen in your system and 8 weeks to do the same for the metabolite.
I am ramping up to the 20 mg a bit slowly, but not as slowly as some. Through Tues I had taken 3 extra pills spaced out - this got me to just above the level steady state of tamoxifen if I were on a 10 mg dose every day and about 75% of the steady state of the metabolite of a 10 mg daily dose.
I took another extra yesterday morning with the idea that I would build up to something under the 15 mg a day dose, then up to the 15 mg a day dose. Options for building up to the next level would include either taking an extra 10 mg every 3 days or splitting tabs and doing 15, 15, 10 to get up to 13 grams / day in my system as the metabolite continues to get closer to the 10 mg / day steady state.
So far I haven't had many side effects, which is great. I'm more concerned with those that you aren't aware of until they happen (DVT, lung clots, cataracts & other vision issues, etc).
Finally - to my questions . . .
Tablets aren't scored, but have read of people splitting them. Has any had a negative issue w/ regards to splitting them?
Nausea: So far I have taken four extra tablets. I take my daily 10 mg with dinner so about 3 hours before bedtime and that seems to work. I take extra with breakfast. With the first two and with the fourth extra tablet, my experience has been like this: take normal tablet Wed evening, take extra Thurs morning, take regular Thurs evening and then late Fri morning I feel nauseous. So far the nausea goes away if I eat more food. The first two times were in the US where I had a hearty breakfast (Whataburger sausage taquito, hash browns and probably a cinnamon twist). This last time, I am in Panama where I spend 7 or 8 weeks a year and had a smoothie w/ fruit, soymilk, flax & matcha for breakfast. In all cases, my breakfasts on "extra pill" day are similar to breakfasts before and after that and I haven't had nausea any other time except one morning when my throat hurt and I was congested and we were going up into the mountains. So, I'm thinking the nausea must be a side effect of increasing the amount in my system. Now, what is the best way to deal w/ this?? For those who have had nausea, did it get to the point that you no longer experience nausea? If so, how long did it take to go away? Another option might be to take the extra amount with dinner also - have those who had nausea issues switched to taking in the evening with good results?
Thanks!
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Hi DorothyB: I started right out with the 20 mg Tamoxifen daily, in the morning. I did have a little nausea the first few days but none since the first week. I have been on 20 mg daily for 3 1/2 weeks so far, no other side effects.
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