Bottle 'o Tamoxifen

Oh I would like to hear about turmeric implications as well. I have taken it since uterine cancer back in 2014 and never even thought it might interfere with tamoxifen...

CarolS--I just posted a whole thing about turmeric in the "Doing Well on Aromatase Inhibitors" thread (I think this is it.... https://community.breastcancer.org/forum/78/topics/854403?page=50#idx_1497 ). I posted yesterday. At first my MO was against me taking it, but I told him I'd found some new studies showing it's ok to take with Tamoxifen. He's a "research" guy like myself and once he did his own research, he told me he was totally ok with me taking it. He said it's much like soy....newer studies show it's actually ok to take in certain forms and certain amounts. Let me know if you can't find the post and I'll repost it here.

BlueGirlRedState--Not really sure what I said about hair thickening. I know about a year into Tamoxifen my totally straight, baby fine hair suddenly developed a "swirl/curl" on one side! No chemo or rads for me so pretty sure it was the Tamoxifen. And my hairdresser noted that is was also thinning a bit. Once I finished Tamoxifen it took a long time for it to thicken back up, if you can call my baby fine hair actually thick. LOL. I would say it was at least 9 months before I started to see a difference. And I'm now about a year and a half from finishing and I still have the damn swirl!!

Hello, ladies!

I haven't posted in a while. I think I have settled into the longer-term side effects of Tamoxifen now. I've been taking it for over two months and haven't seen changes in the last month or so, except for not having the dry eyes that I was experiencing initially. I met with my MO a few weeks ago and confessed to only taking the 10 mg instead of the full dose. My rationale is that the insomnia is absolutely horrible with the lower dose and that I can't imagine how impactful it would be on daily living with a full dose. My MO bought into it but suggested I try a higher dose at some point. I've been prescribed an anti-depressant in a very low dose which has the side effect of drowsiness. But, the SEs from that appear to be absolutely horrible and I'm not adding to my misery. So, I take 10 mg of melatonin and sleep between 1-6 hours a night. And then I drink a giant cold brew each morning. I am hypothyroid and have never had sleeping issues -- ever. I'm a 9 hour a night person under normal conditions. I have been playing tennis like a mad lady with the hopes of tiring my body out and not gaining the weight that comes with the drug. The heat index was 105 last weekend and I played in four matches during a tournament. It was physically exhausting but didn't impact my sleep pattern at all. If only this drug could be used for college kids during finals week!!!

lala1

I have been on Tamoxifen for about 4.5 months now. Around the end of the second month I noticed strands of hair caught in my fingers every time I washed my hair, which is still happening. I also have very fine, straight hair, and interestingly enough, I also developed a weird curl on one side of my head! This drug causes such an odd array of side effects. I'm managing them, 4 months in, but the thought of dealing with this for 5 to 10 years is kind of a drag.

Hope everyone is staying safe.

I posted elsewhere and think its better here.

Have been on tamoxifen over a week and the last three days are awful. Stomach cramping day and night. Started out with no problem

Can I hope this will get better?

Rebalilly - I took tamoxifen for 5 years after lumpectomy and radiation 2009-2014. When you take it might make a difference. I found that my tummy tended to gurgle less and I slept better if I took at bedtime vs with breakfast. I was already in menopause. As I read the various posts, it seems like Tamoxifen is harder on those who are premenopause.

Rebalily, I second what Beaver and BGR said. I never had issues with constipation until I started tamox. That was one of the first issues! So make sure you are taking in plenty of fluids (so you can pee all night, hooray!) And up your fiber game. Good luck!

PetuniasNanny: I have been on Tamoxifen for 5 months and have been lucky to not have the leg cramps at night. I’ve been taking magnesium as some have suggested, so perhaps that is helping? I do, however, have stiff and painful calves all day. When I go for a walk, I’ll feel some cramping, but can usually walk it off. I also get a really tight feeling around one of my ankles, that I can also walk off. The side effects of this medication are truly weird

Hii everyone! Hats off to everyone for all the advice , encouragement & support! Although I don’t post after, I do follow each day.

My question is has anyone had virtigo while on tamoxifan. I have been on it for 6wks now and the other night after rolling over to left side in bed woke to the room spinning and a falling feeling. This continued for a couple days when laying on left side. Perfectly fine walking, sitting etc. No headache, earche , stuffiness. I will be making a doc appointment but just wondering if anyone else had experienced this. Of course my mind goes to brain Mets.. Thanks everyone

Years ago before any BC or treatments after the third day of vertigo I went to urgent care and was diagnosed with benign positional vertigo - they do not know what is causing it or why things in inner ear are floating around, but benign meant it would clear up on its own. After I left I realized I forgot to tell the DR that a couple of days prior to the onset, I had tried to roll down sand dunes like a little kid. If your vertigo is not from the drugs. It did start clearing up over several days. Hope it clears up soon

https://www.mayoclinic.org/diseases-conditions/ver...

https://www.webmd.com/brain/home-remedies-vertigo#1 There is also an exercise a partner can help with by slowl rotating your head from one side to the other

Lumpykins, tamoxifen can cause dehydration, thus the constipation and I have read that dehydration can make a tendency to vertigo worse. I was just reading up on this because Hub gets very ill after certain motions and I was reading up on vertigo and it turns out he does not have it. He has motion sickness. If you feel dizzyish it can be vertigo. If you start barfing, it's likely motion sickness. Apparently there's a difference. Hub is of the barfing variety. Dehydration makes both worse. Drink water while rolling down sand dunes. 

Hi everyone,

I hope you are all staying healthy and safe with the wildfires, hurricanes and covid-19 this year has been a challenging one for all of us.

I had a question about different brands of Tamoxifen. I know this has been talked about before, but I don't have the energy to look through old posts now. Which brands of tamoxifen have worked for you and which ones did not agree with your body?

I have a friend who is thinking about switching brands do to horrible side effects.

Thank you all Hugs to all.

Take Care,

Sara

Sm627, I am going to be the fly in the ointment. I have read, repeatedly, that one brand 'works' for someone while it does not work for someone else. Every time I've read this my inner skeptic has been, well, skeptical.

First off, what do we mean when we say 'works'? The active ingredient and the amount of the active ingredient in tamoxifen tablets is the same, no matter who manufactures them. The chemical components of tamoxifen DO NOT CHANGE from maker to maker. Tamoxifen is tamoxifen is tamoxifen. Period. What does change might (might!) be the other guck they put in the tablets to actually make them into little round blobs that hold together in pill form. It's like a cookie, the base ingredients are the same, sugar, butter, eggs and then you can add raisins or chocolate chips or oatmeal or god forbid, dates! But a cookie, no matter how it ends up, starts out with the base ingredients. Same with a tamoxifen tablet. They are all based on a 20mg dose of tamoxifen + other stuff. So HOW can that 'other stuff' make that big a difference? Has anyone even researched the differences between brands? Do we even know if the different brands are made in different places, or do they all come out of the same factory with different brand names stamped on them? To say that one brand didn't 'work' would reasonably mean that one brand allowed  women  to have a recurrence of cancer. How long would doctors keep prescribing a brand that had a  track record of literally not working?! So we have to be careful, I think, when we say one brand does not work. I think it would be more accurate to say one brand seems to be less tolerated by some women. Again, what ingredients in different pills could lead to this difference in tolerance?

As I have journeyed through tamox I have found that the side effects are like the tide. They roll in, they roll out. It's like a revolving door of unpleasant surprises. I'll have some side effect that drives me bonkers for weeks or even months and then it will ease off and something new and equally miserable will take its place. All of this variability and misery on the SAME brand of tamoxifen. So, is it the brand that is causing me to be miserable? Or is it just that tamoxifen itself can be pretty miserable and I would be feeling the same no matter what brand I took? I honestly do not believe that changing brands would make things better. I know many people say it does, but that is anecdotal evidence. Which, I have to say, I often put quite a bit of stock in. Where there's smoke there's fire and all that. 

Having said all that, there was recently a global shortage in the tamox supply (it might still be going on, I don't know!) and I was given a different brand than I normally get. I did notice a difference. This new brand dissolves in my mouth almost instantly  leaving an unpleasant taste  for me to contemplate as I go to bed. Not loving that. But the leg cramps I had on the original brand, I still get on the replacement brand. The falling out hair and rapidly aging skin, still get it on the new brand. The aching bones and joints, the lack of energy, same, same and same. 

So, I guess Sm627, my questions is, what actual ingredients in a tamoxifen tablet can have that kind of physical impact? Because tamoxifen is the one ingredient in all brands that does not change. Can flour, sugar and gumbo really have that big effect on tolerance? Again, my inner skeptic is thinking that just doesn't add up. I might be wrong. I might always be wrong! But.... I think this drug is just very miserable, period. I think switching brands might only be sensible if some research is done into what exactly each brand puts in their pills, all of those ingredients being pretty inert, except one: the tamoxifen that each one carries. There's just no getting away from it! 

Beaver, I agree that the phases of tamox side effects do pass, and then the damn things come back! Like a boomerang! You can see it head off into the distance and you heave a sigh of relief, good riddance stupid side effect and then, whoosh, whoosh, whoosh, you hear it coming back and see it whistling in your direction with just enough to time to utter, oh crap, before it whallops you.

It would be interesting to know if  tamoxifen that comes from different companies is indeed manufactured with different fillers? Or is a tamox tablet identical no matter the manufacturer? I bet a pharmacist might know the answer to this. Or know where to look. I do know my original tablets were much harder. They were much harder to cut in half without shattering. But they remained whole until I swallowed them. The replacement tamox was softer, split very nicely and neatly, but dissolved almost instantly in my mouth. Blech. So there is a difference...but WHAT is the difference? It's a mystery!