Bottle 'o Tamoxifen

Paco

Just for your information, please ask your doctor to get regular blood tests if you are taking Tamoxifen. I was on Tamoxifen for 9 months and have decided to take a break from Tamoxifen due to hair loss and have been off for about 2 weeks now (since January 31). I had an appointment with my primary doctor and she ordered routine blood tests for me (I had the blood drawn on Feb. 12). Turns out my ALT and AST levels (testing for liver enzymes) are abnormally high and my WBC (eosinophils) were down close to 0, i.e., abnormally low. Both of those indicators are normally due to alcohol abuse. I drink very little, maybe one drink or at most two per week, so there is no way my liver is affected by alcohol. It is likely due to the tamoxifen.

This only confirms my decision to come off the med. I had early stage cancer, so my doctor gave me her blessing to go off, but please be careful if you are going to take this medication.

BlueGirlRedState

lala1 - The plastic surgeon I consulted before any surgery said 7-10 years before implants would need to be replaced, but that it was an out-patient surgery, and much less involved. It definitley is something to talke about with the surgeon,and why there is variability in the life span of implants. I did not do reconstruction. I did consider DIEP.

Sgoodkin

I'm in last 4 months of 5 years on aromatase inhibitors and have worsening cold chills. My thyroid is normal and exercise a lot. I really haven't complained about them to and doctor. I Wonder if they will go away when Istop the pills in 3 and half months.

Moderators

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WC3

I skipped my Tamoxifen today. I've only been on it for a month and a half but it makes me acutely depressed and I needed a break. It puts me in the strange position of not wanting to die from cancer but also feeling like I can't hack existence.

runor

WC3, your post gave me pause, for a few reasons. I think your short post covered a wide range of complicated topics.

I was no fan of tamoxifen. I felt and continue to feel that the research ball got dropped a long time ago and we do not know the lowest effective dose OR if different women would be fine on different doses. OR why not use a more creative approach to taking tamoxifen other than blasting us with it for 5 years then pulling the plug and sending us on our merry way.

When my Oncotype said I was not likely to respond to chemo I was, at first, relieved. But then I thought, well if there are only 4 bullets in the gun to shoot this damn disease; surgery, radiation, chemo and hormone blockers, I am down to only three bullets. I hope whoever is aiming the gun has a steady hand and good aim!

After much research (most of it wildly inconclusive) I decided that I was going to take HALF a dose of tamox, then I would only get half the side effects at half the intensity. Right? WRONG!! I've had it all. But I want to say this to you, for me at least, it got better. Much to my surprise, it got better. Yes, my joints ached like hell for the first year but a while back I woke up and thought, hey, wow, I don't hurt as much. Oh my hair is still falling out in handfuls, I get terrorist leg cramps, epic chin hairs and hot flashes and my hoohoo packed its bags and moved to Florida. BUt overall, I have to say I am doing better than I thought I would.

I see that you were only diagnosed last year. It has been a bad year for you. Maybe, just maybe, your depression is from the fact that some seriously depressing things have actually happened to you. Your life got sucked into some circus of crazy that you were not planning. You have weathered treatments and adjusted to some terrifying realities. And there are not guarantees. I think depression, not to mention a well earned case of PTSD, is completely rational, absolutely normal, to be expected and YOU ARE NOT ALONE in that! I say this with the most gentleness I can muster...it might not be the tamoxifen. It might just all be crashing down on you now, now that all the rush and fuss has ended and you are just standing there, mouth open, a little wobbly like wow, what was that bullshit all about? You may be feeling this way even if you weren't on the tamoxifen - because the timing is about right. We stagger through and then sometime later, when the dust has settled, THEN we get the shakes and wobbles and come unhinged. We are much stronger and tougher than any of us knows.

If you feel the need for a break, but also feel at risk not being on the drug, take half. OR take a whole pill every other day. OR take half a dose in the morning and half at night. This is not what your doc would tell you to do. This is not standard of care. But your doc also CANNOT show you any research that says your risk goes up if you lower your dose for a while. Tweaking your dose or the timing of it might cover both your concerns. It might allow you to have a bit less of the drug in your system, and maybe your mood will change. AND it allows you to have some drug in your system, providing you some measure of protection and some mental security that you didn't abandon it completely. Obviously, you are the ultimate decider and you know what you are most comfortable doing. But if you are feeling unsure, I don't think it has to be an all or nothing proposition. You can fudge it if you want. I hope you feel better. Misery is ...miserable.

Dizzybee

WC3

I echo what runor has said, it is really hard to separate out what the drug does from what would be happening anyway. I think it gives me anxiety and depression, but I don't know for sure that I wouldn't be in that boat anyway.

The one thing I would say, is that I have found an antidepressant that keeps me happy, and means I can keep on taking the tamoxifen. I wish I didn't need it, I expect some would think I should just keep battling on, but the truth is, I'm going to do whatever it takes to make the best life I can now this thing is behind me. And if tamoxifen is what it takes to prevent a recurrence, then I want to take it.

So rather than stopping the tamoxifen, how about discussing with your medical team whether there are any meds you can try which would help you get through this? These are tough conversations, but you've already been through the worst. And antidepressants aren't a life sentence, you might find in a few months things are better and you can come off.

Anyway, sending you a hug, and hope that things get better for you soon.

Xx

Rah2464

Runor - wow you have eloquently captured this tumultuous experience. Thank you so much for that. There were days when I questioned my capacity to manage anything.

WC3 - my ONC actually told me that it wasn't uncommon to be somewhat depressed during that first two months of taking Tamoxifen. She said as your body stabilized on the drug that should ease. If it didn't there was a low level of anti depressant to try. We had this dialogue when I had been on T for 8 weeks. By my next appointment three months later I was better. So please reach out to your doctor, and let them know the impact you are experiencing. Hugs

Andraxo

Wow runor, just WOW. So well said, in every aspect. Thank you!

I've been off Tamoxifen for 8 weeks and 2 days after taking it for 2.5 years straight. I feel SOOOOOOOOO much better all around. Mentally by far is the biggest change (just wasn't feeling like myself until it cleared from my system and I realized I felt like ME again). Muscles great. Skin oily again. (All of those noticed by 3 weeks off it). Joints finally started to improve between weeks 6-7 off it. MO just agreed to lower dose last week. She will prescribe 10mg. I will take half of that though, because there's no evidence of a lowest effective dose. I'm just not sure when I will start back on it...maybe in another month? I'd like more time for my joints. If same symptoms develop again though, I either will take another break or won't take anything. It just depends on how fast the side effects intensify and to what degree. It took well over a year on it for me to feel really awful, with the worst being the last 6 months prior to my break from it.....as if a toxicity built up. The longer I was on it, the worse I felt.

With a half life of 5-6 days, that's a lot of freakin Tamoxifen floating around. In 5 days you still have 10mg in your system! I went on-line to use a half-life calculator to determine how long it takes to completely eliminate a drug from your system, for Tamoxifen it is 840 hours, or 35 days (assuming a 5 day half life). Makes sense that by a month off it I noticed a big difference. At 20 days it's down to just a few % though. MO said it takes 2 weeks to get it out but really it is much longer based on the drug calculator. Taking a 2 week break (as I've heard some MOs recommend) is not enough in my opinion if you're really trying to tease out if the drug is causing your symptoms/side effects. My MO wanted to blame almost all of it on menopause (age 49) and getting old (I'm a fairly competitive recreational athlete in great physical shape otherwise).

- xo

lala1

Well not to be a downer but I just hit 1 year since I finished my 5 years on Tamoxifen and I feel like there are some issues that are just now going away!! I actually had my SEs ramp up when I quit, like I was going through withdrawal. All my joint pain that I had under control got worse. And I actually packed on another couple of pounds! I was wondering if I'd be better on it! Then about 2 months ago I dropped a pound. Not a big deal right? But it was the first time I'd LOST weight since I started this whole mess despite joining a gym a year into it! And now I'm down about 5 pounds. Woo hoo! Not alot but better than what was happening. And really odd...my nice silver hair turned yellow about a year into Tamoxifen. Here I am a year out and my hair dresser noticed that the yellow tint is growing out. She said it looks like about 1 1/2" of the old silver which would be about 6 months of growth. I'm hoping that continues. So yeah....there may be some statistical numbers that show half life and such but for me I feel like here at a year out I am just now starting to see the old me come back. And I think it will be another year before I really see a difference.

Stupid Tamoxifen....

Andraxo

I believe it lala1! So glad you are finally starting to feel better of T! I think the longer you are on it the longer it takes to clear. Those calculations are for ONE dose of a drug...how long it simply takes to leave your system/bloodstream. My MO said 2 weeks for Tamoxifen to leave the system. Not true for the math and also not true for losing the side effects. It takes FAR longer for a body to recover from what the drug did for so long. Of course then there can be rebound effects...like you were saying, like going through a withdrawal.

I didn't even have joint pain until taking it for well over a year. I knew better than to expect the joint pain to disappear just because the drug was out of my bloodstream. I also knew that 4 weeks holiday (as MO wantedd0 wanted going to be enough to make an educated decision about whether or not to go back on it. At 2 months joint pain is starting to get better. Mental changes were right at 2-3 weeks though. I hear some MOs say to take a 2 week holiday. If I had started back again even at 4 weeks I never would have found out that my joint's can get better!

I seriously wonder how bad it is for us to be on it continuously for years and years. I'm supposed to be on it 10 years. I can't imagine how much more miserable I would have felt if I continued to take it and think that was how I had to live. I still remember freaking out if I missed a dose. I missed only 2 doses in 2.5 years. Now, knowing how long it stays circulating, I will have zero concerns about missing doses should I decide to go back on it.

- xo

lala1

Andraxo---I hear ya! In 5 years I never missed a single dose!! I was too freaked out about not having in my system. Then the BCI test showed I'd get no benefit from continuing after 5 years. That was a real mental struggle to let go of it. But a year later and I can honestly say I rarely think about whether I should keep taking it. And now that the weight is coming off (albeit just a little bit but still coming off) I feel much better. My MO was very quick to remind me that even a 10 pound weight loss for someone at my weight (165) would reduce my recurrence risk by about 30-40%. That's almost what Tamoxifen did for me!

tinker-bell

Hi there! I’ve been off the forum for a while but in last couple of weeks feeling really exhausted and achy legs/arms. Been on T nearly a year and a half. I do exercise 2-3 hours a week and take vitamin D, multivitamin, fish oil. Will add magnesium and do more Epsom salt baths! Any other tips for fatigue andthe aches and pains?

Jen2Mom

good evening, I finish radiation next week and then start my tamoxifen so I was reading up on this this board as to what to expect. I see a lot of you take magnesium, how much? Also what other supplements have you found useful? Also what time of day do you take your medication?

lala1

Jen2Mom--I took my T every morning at breakfast with all my other supplements because I'd get nauseous if I didn't have food in me. I'm done with my 5 years but this is what I took (and still do!) 500mg Gaia turmeric (must have the black pepper in it) for the joint pain, 500mg ginger (great anti inflammatory), 500mg magnesium glycinate, multi vitamin, 5000 mcg Biotin, 5000IU Vitamin D (finally got my levels up to 70. I was 25 when diagnosed and my BS believes low Vit D is a contributor to cancer), olive leaf extract (haven't had a cold in 3 years since I started this!) and a good probiotic with 14 strains and 35 billion CFU ithat I get from Vitamin Shoppe. And I do yoga and/or weights and/or cardio pretty much every day. And I drink a ton of water because T is very dehydrating. When I finished my 5 years I had my annual with my PC who is one of the few who encourage supplements. I mentioned stopping these now that I was off Tamoxifen and he encouraged me to continue, especially the turmeic, which he said recent studies show it to be the possible next wonder drug for heart health, joint issues and all around anti inflammation. And to definitely continue the Vit D as he and ALL my doctors think like my BS about low levels and cancer.

Beaverntx

Jen2mom, as suggested by my pharmacist, I take my daily Tamoxifen with dinner. So far, so good!

DeeBB

Jen2mom - I take mine at dinner time and so far so good. The only vitamin so far I'm taking is Vitamin D and sometimes I take Biotin, if I remember it.

astyanax66

Hi, all, been a while since I've been to the website. I made it through chemo and radiation pretty well. But the AIs were awful. I have spinal stenosis/osteoarthritis, and where I live (very rural area), doctors are reluctant to treat pain aggressively because of DEA scrutiny. I walk every day and lift very light weights (<5 pounds). I treat pain with Tylenol, Aleve, and Tramadol, twice a day. It's never enough to eradicate my pain, but it makes it bearable. I have also started using melatonin and chamomile/valerian tea for sleep, and I take vitamins and fish oil. (No Benadryl).

After 2 AIs, I asked about trying Tamoxifen, and MO was good with that. Compared to AIs, the aches and pains have been MUCH better. I'm post-menopausal, so a few hot flashes are okay, not odd for me. But...no sleep in like 3 days. I was WIRED after taking the tamoxifen. I couldn't see straight to drive my car this morning. I do a sleep routine and cognitive behavior practices/mindfulness, and nothing helps. I called the nurse navigator, and she said she'd see what they could do. Meanwhile--I'm afraid to take my Tamoxifen because I *have* to get some rest! Also, I have to get all meds cleared through my PCP (her office policy). I don't mind, but that means waiting until I know what the MO is going to prescribe before I can start it.

How do you guys manage straight up insomnia, rather than night sweats and hot flashes? Any suggestions? I appreciate it.

dee

runor

Astyanax, as I'm sure you've read, tamoxifen remains in your system for a long time after you stop taking it. Skipping one dose is not likely to make a change in your insomnia. You'd have to go off and stay off for several days (not sure how many, read back a few posts for that information). I have found with many of my tamoxifen side effects, over time ( a long time!) they got better. Ish. Betterish. Maybe at night run a hot bath, light some candles, pour a big glass of wine, soak with your eyes closed. Then straight from there into your warm, cozy bed. It is terrible being tired! I hope this passes soon. In the meantime...wine!

Veeder14

Hi Astyanax,

Before being taken off Tamoxifen for surgery, I took it for 4 months and never got a decent nights sleep. One hour here or there and it was awful, I was so exhausted. I'm retired so sometimes I took naps but then only sleeping for an hour didn't help that much. I don't know why this stuff seemed to wire me up. The 4th night after being off of it I slept 10 hours straight and never had a sleepless night since. Anyways, I'm soon to start on it again and don't want to take sleeping pills on a regular basis. So, I don't know the answer but I'll be looking for a solution.

astyanax66

Thanks, ladies. Well, hmm. I think I either have to choose untreated pain or untreated insomnia. At least I slept on the AI. Alas, wine is something I was told to limit to a couple times a month, if ever. I’ll think about it.

Dee

jpBCfree

Sorry to be a wet blanket but those of us who have had estrogen positive breast cancer need to be mindful about drinking wine or any kind of alcohol. There are lots of studies on this topic, a few links below.

I never thought that I could ever give up my beloved glass of wine but I have. I won't lie, it wasn't easy at first but almost 3 years post diagnosis (and post drinking) I get almost as much pleasure tasting and drinking good quality herbal and green tea.

"Drinking alcohol increases estrogen levels in the body. ... For breast cancer survivors, some early studies suggested, at least for ER positive breast cancer, risk of recurrence may increase when a woman has more than one or two drinks per week." https://www.oncologynutrition.org/erfc/healthy-nut....https://scienceblog.cancerresearchuk.org/2017/05/2...

MarketingMom

Veeder14 Is there a reason you were taking it at night? I stopped taking T after 10 years and had always taken it in the morning (with my supplements) with no issues. If you're worried about it hopping you up too much (like happened with astyanax66) perhaps you try on a day when you don't need to drive in the am? Or take midday? I don't recall my MO ever saying what time in the day I needed to take it.

BlueSky1969

Hi all;

I'm in a rough patch. I had revision surgery Jan 28th, and I thought I'd be feeling a weight off and pleased to be on the otherside of this terrible year. I am grateful I've had the final surgery and am healing well but...the Tamoxifen is terrible. My mood has been bleak, I've got bone pain, hair loss, crankiness, all round unwell SE's. I'm not sure I can get through 5 yrs of this. I started Tamoxifen in July, stopped ahead of my original revision surgery date (which was cancelled last minute), started again for a couple months, had to stop again for my surgery Jan 28th. I've been back on for a couple weeks. I've been weepy the last few days - but stuffing it b/c I have kids to care for. I bulldozed through this year as best I could - pretty stoic I think - but now I find myself depressed, unable to engage or settle on anything, and am unproductive and feeling sad.

Maybe I need to join BC support group? The on/off w Tamoxifen is challenging, and I'm starting to wonder if it is worth the decrease in quality of life.

I feel lost.

BlueGirlRedState

Jen2Mom - with magnesium, look for the post from someone who suggested magnesium glycinate or biglycinate and NOT magneium citrate. She found the glycinate absorbed better, but also mentioned that magnesium citrate was a main ingredient in that lovely jug you get when getting ready for a colonoscopy. I switched, and I think it does absorb better. There are other formulations, and I do not know which is best. Do not take more than the recommended dose on the bottle. I was getting 2-3x more at one time when I failed to realize that the calcium supplement also had the daily mg, I had an episode. I am still prone to some cramping in calf muscle. Cramp can happen when exercising and when at rest or even streatching. My DR suggested that I take potassium as well, be sure to stay hydrated, and consider electrolytes when exercising. I stay active with hiking/biking spring/summer/fall, nordic ski in winter. Go to the gym a lot and do treadmill/bike, weights, streatching.

Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while

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.

Kiso20

Hi everyone! Haven’t been on the site for a while but I’m so glad that you’re all here to share with us your experiences. After much debate, freezing my eggs and adjusting to a new job, I’ve finally started Tamoxifen a few days ago. Since diagnosis in july 2018 I’ve gained about 20lbs and am having a hard time losing it. I’m worried Tamoxifen isn’t going to be much help with that either. I decided to take it at bedtime and I’ve been waking up with horrible headaches. No extra body aches yet except my chronic back pain. My doctor told me to try for 5 weeks and see how I tolerate it. She said if my symptoms are not well tolerated then she may consider lowering the dose. I’m not sure if that’s better or worse knowing that they only adjust the dose based on symptoms and how we tolerate rather than what’s effective or the right treatm

Veeder14

Hi Marketingmom,

Thanks for your input. I was taking it after dinner because there was more food in my stomach than after eating breakfast. I've decided to take it midday after taking a Carafate pill that coats your stomach. Carafate can't be taken at the same time as PPI's so it won't work to take it at meal times. Maybe it won't mess with my sleep although the side effects list identifies sleeping problems as a side effect of the medication not specifically from having a lower estrogen level. I have never had problems sleeping during menopause and my estrogen was much lower than before menopause. We'll see. I'll report back.

runor

Bluesky, I think this time of year in Canada makes everyone feel that way. Messy, cold, kids indoors more than normal, you dealing with the mental fallout of this whole cancer insanity - it might not be the tamoxifen. It might be that this is a shitty thing during a shitty time of year.

I was scared and reluctant to go on tamoxifen. I felt like a test subject since the most effective, lowest dose was never investigated. There are a lot of unanswered questions about tamoxifen. BUt it is also known to be effective. There's just a lot of gray area between those two polar extremes.

As you may have read (and everyone is sick of hearing, sorry!) I take half a dose. This was my down-the-middle solution. I thought it would reduce the side effects. It did not. I had many. But now, 1.5 years in, the effects are less. Which is not to say that they aren't there. Hub says I am more 'intolerant'. Yeah, well, no one would tolerate listening to you eat like a pig at a trough so no, I'm not intolerant, you're deaf and rude so piss off. It's not that I'm more intolerant, it's just that I don't want my last years on this planet being wasted listening to smacking and slurping that makes my spine convulse. This is marriage related, NOT tamoxifen related. But I digress.

You have kids to raise and I am sure that weighs on your mind. Heavily. If tamox gives you a fighting chance, it's worth taking (in my opinion). Try half a dose and see if it makes a difference. No, your doc will not give you his blessing. But he won't give you his blessing to go completely off it either. So in trying to find a way to live every day and keep the damn cancer from coming back, the compromise might be half a dose? It's a suggestion. The ultimate decision is always yours. But you might find, if you tough it out for a while, that your body adjusts and Spring ... oh lord let's hope for spring! Hugs to you.

Catkin

BlueSky1969 I'm sorry to hear that you are having such a rough time of it with your low mood and all the other side effects. Well done on getting through your treatments last year and in January, that's great that you are healing well after the operation.The BC support group sounds like a good idea. How about some counselling so you can unload on someone. I would tell your doctor how you are feeling in case they can help and give you the feeling of being supported.

I know the feeling of trying to keep normal life going for my kids (who were 12 and 15). It's difficult that we can't fully tell the family how we are feeling. On the positive side I'm 3 years in and I feel as though the SE are on average better, plus I allow myself one month break off the Tamoxifen per year (roll on August). Hang in there, try lots of self-nurturing and never mind being productive. I hope you find some solutions.

BlueSky1969

Thank you Catkin and Runor - your words are a lift. I'm going to make an apt w my GP next week, and look for a support group as well. It's been a slog...