Bottle 'o Tamoxifen

TinktheTonk, my symptoms are more in my joints and may be related more to arthritis than Tamoxifen. Have read more concerns about joints the tingling in the extremities. Hope someone else can chime in...

Thanks Beaverntx and Runor for responding! I know all about the fat too. LOL!

I think I have read almost every single page of this thread from the beginning, but would like to jump in with a “thank you” from everyone that I have learned from and then a quick question.
I started Tamoxifen Sept 1st. Around the 2nd week I started to notice very “crampy legs.” From the top of the back of my legs to down behind my knees and even my ankle joints. Even the bottom of my feet cramped sometimes. Then my hip and tailbone started to become sore and almost a burning feeling upon sitting. Every muscle in my legs felt tight. I called my oncologist and I was surprised when she said joint and muscle pain were not a SE of Tamoxifen. I was not really worried until she said this because I had a very low grade/stage tumor (Tubular), low Oncotype score(7) and no node involvement...but now I am a little concerned.

They are allowing me to take a vacation from the Tamoxifen for 3 weeks and ordered PT. I feel like I have started every suggested cure for my aches in the last few days (i.e, exercise, tonic water, supplants, stretching, Advil, etc.) Has anyone else had similar symptoms and/or their doctor tell them it’s not related?

For water intake I aim for about 80 oz a day. This seems to help with the cramping. Some of the ladies also swear by magnesium supplements.

If you want to know the ingredients you can use the pill finder on drugs.com and it lists the inactive ingredients. I actually have changed brands with some success in lessening my dry eye. I know it worked because I went back and tried several times and every time the agony returned. Glutton for punishment.

I also agree with all the comments about the revolving side effects. I have sworn I would quit several times and then the side effects abated.

Good luck to all the new initiates!

Molliefish, you nailed my sentiments exactly. Anxious to be done, anxious for how I'll feel when I AM finally done!

As to leg cramps, I find sudden movement is a trigger for me. If my leg is straight and I quickly bend it, look out! Same in reverse. Leg is bent and I quickly straighten it - heaven help me! This has impacted my sleep because I hover in a state of near consciousness to always be aware that when I roll over in bed or re-adjust, I do it slowly, deliberately, shaking out those threatening limbs as I go. As I feel a cramp coming on, that few seconds before full on OHMYFRICKINGOD happens and you flail out to stagger around the livingroom, tripping over the dog and vacuum cleaner, pounding on your thigh while crying and gulping water..... I can sometimes head it off by flopping my leg. Flopping is keeping the whole leg very loose, very floppy and just flopping it back and forth, side to side, let that droopy old muscle just slither and slide all over the place. I move it from the hip, keeping the knee loose. Imagine your whole leg is asleep and you have to roll it side to side like a wad of dough. I know this makes no sense but this, this floppy, rolly, shakey thing has saved me - sometimes. 

Bns, I started taking 400 mg of magnesium glycinate as others had recommended it for muscle cramps. I think it has been helpful as I now have more muscle twitches, rather than major cramping. I have a lot of leg stiffness as well, but other than stretching a lot, I haven’t found anything to help with that. It really frustrates me when doctors say that muscle and bone pain is not a side effect of Tamoxifen, when so many of us on this site are experiencing the same things.

I ended my day yesterday with a 5 mile bike ride in our local park. It just about did my legs and hips in but I just told myself at some point it has to get better. The day fatigue is unusual for me as well. Hopefully, I will start PT this week and help my legs will not feel so stiff. I woke up last night to my left leg completely asleep. I guess why I am just so depressed at the moment is in my mind I thought getting the surgery and all the pathology/test results behind me I could just move forward as normal. I think the realization is hitting me that might not be the case for awhile. That’s okay, starting the day off positive with a giant bottle of water and my coffee!

Hi all! I am going to apologize up front if the answer to my question has already been posted somewhere here, but I really don't have the attention span to read through ALL of the content. Clearly Tamoxifen is a beloved topic 😏 Feel free to link me out to helpful info if you have it.

I have been on the T for just about 2.5 years. I've had insomnia, mood swings, hot flashes, crazy muscle cramps and brain fog. Thankfully I don't have all of them all of the time. While those things have all sucked, my hair has started shedding at an alarming rate only recently. I clearly remember being so relieved when I was told I did not need chemo because I didn't want to lose my hair. Now, I'm not so sure it wouldn't have been easier to just lose it all at once rather than by the fistful every time I run my hands through it.

So, I've got two questions...

1. Does anyone have any tips, products, strategies that were helpful for this? I'm taking Biotin and have resorted to topical 5% minoxidil to try to minimize loss and encourage new growth.

2. Is my hair going to recover after I quit taking this pill everyday - in 2.5 more years? It is impossible to find info about how hair 'recovers' from hormone therapy in general.

I feel so self-absorbed asking about this, but it's starting to really stress me out. I am super grateful that this is the item that bothers me the most and I am fully aware that not everyone is that lucky. Just looking for a bit of guidance from those that have walked this path already.

Thanks

SadieSue, I too am about 2.5 years in on Tamoxifen and am finding that, like other SEs , hair loss comes and goes. From what I have read the degree of recovery varies from individual to individual.

Thanks Beaverntx! It's good to know what your experience has been with hair loss. I feel like the other SE's, while annoying, are at least private. This hair loss thing is so public. I guess I can count myself lucky that I'm working from home due to COVID. Maybe my hair will recover before the pandemic is over.

SadieSue, you asked about helpful products / ways to manage hair loss. A drain catcher so that mess doesn't gnarl up your pipes or septic system. I cut a pipe cleaner in thirds and coil it like a snail, drop that on top of my drain grate in the tub and it catches the majority of the hair. Every two weeks or so I wrestle it free and throw the whole disgusting clot of hair and god-knows-whatelse into the garbage. Replace with new pipe cleaner curlicue.

Only recently my hair stopped falling out in such quantities. But I have a receded hairline and it is thinner on the top and front, making my bangs do incredibly stupid things. For the first two years I thought, holy shit, I'm going to be a bald, blind, limping, bitchy beggar on the street at this rate! All of that happened except the street part. There are moments of pure misery. Yet, like Molliefish, I worry how vulnerable I will feel when my tamox time is up, in two more years. 

Lately everything, and I mean EVERYTHING my Hub does annoys the hell out of me. To a murderous rage state. I am annoyed at him when I open my eyes in the morning and he's not even here. Left for work. As the day goes on and I find a mess he's made  or something I asked him to do 15 times and it's still not done I immediately begin plotting his death. The man must die! And then I step back and say wow, is this the tamoxifen talking? OR have I been a wife too damn long and have reached critical mass with cleaning up everyone else's  mess? I don't know. Does anyone else find that their ability to tolerate bullshit has hit a hard zero?

it’s not him, the poor bastard. They have had nothing to do with this, and in my case he has gone to the ends of the earth to be supportive. That doesn’t mean I’m not still ready to throttle him for his leaving all his shit at the front door, or expecting the magic hamper to do his laundry, or that there is some kind of whimsical dusting muse who happens by every couple weeks. I love him to death even though I plot the same some days.

runor--I'm now about 2 1/2 years off Tamoxifen and I can honestly say the desire to periodically kill my husband hasn't abated in the least so I'm thinking it's probably not Tamoxifen but rather the sheer stupidity of men. How can you tell one person to not do something 4 billion times yet they still do it? And then seem baffled by your anger? Just yesterday I was thinking that I might need therapy to deal with the fact that I can just look at him sometimes and want to wrap my hands around his neck. Ever heard the song by Pink called True Love? That's become my anthem. But then I realized that I'm not the one that needs therapy, he does, so I just go out and buy myself something (not expensive, just a little something for me) and I let him live one more day.

I am experiencing this heart burn.

Also, I have horrible heartburn and it definitely got worse with Tamoxifen. I am on 40mg Prilosec each day and it seems to help.