Bottle 'o Tamoxifen

The cramping... I fear the cramp. Mine go on and on. I find drinking water before bed helps, but then I have to get up to pee. So it's either a cramp throwing you out of bed onto the floor to flail and moan OR you have to get up to pee. Or it's a hot flash roasting you awake. No wonder I feel tired all the time! 

I just picked up my Tamoxifen. 20 mg. Walgreens is NOT the place to get it. 30 pills $40. No insurance here. I'll go to Walmart next time. Hubby was nice enough to tell me it was cheaper there. No surgery here yet b/c of the Covid and just found out I'm DCIS yesterday. Dr. wants me on the Tamoxifen b/c she can't do surgery or send me to the oncologist yet.

I've rooted around in this thread some. It seems taking it towards dinner is better? Some ladies were saying they sleep better taking it towards night? Also it can cause some constipation- so drink plenty of water with it. Does anyone still drink coffee? I was reading my menopause books for hot flash tips and of course it advises against caffeine. Is there any way to avoid mood swings? Also- naively I was thinking it would throw me quickly into menopause. duh. So I guess I'm still going to have periods for awhile and they'll be irregular and possibly heavy? I guess I'll have to go get some magnesium glycogen so I don't have leg cramps? I guess I should maybe think of putting some extra sheets on the bed or a towel under me in case I sweat like a freak and don't want to get up and change the sheets in the middle of the night?

If I'm about to have a period should I wait until it's done to start? TIA

Am I in the ballpark for what to expect? I'm just afraid this is going to wreck my Qol. You know. Sweat at night, leg cramps, so hence no sleep. No sleep makes me super witchy. Then having to try to work fatigued and witchy. Am I allowed to say fml? I already have fatigue and body ache. If it gets worse I'll be barely able to function. It's the reason I went to my PCP in the first place. Had blood work- everything fine there. Had mammo and 3 moths later biopsy.

Thank you Runor. It’s 12 am and just had a freak out moment so I’m back here reading the form. So afraid to take it, but I saw someone say you can just stop and all the se go away. I guess the time to try it is now before I do have to go back to work. I’m non essential.

I’ve posted this question on two other boards so forgive me for duplication. Friday I started bleeding. Last we checked, 6 months the ago I was in menopause. Hadn’t had a period for 3 years (since chemo) I’m taking 10 mg of tamoxifen and have one ovary. I’m bleeding heavier than my periods ever were. Anyone have this experience or advice? I’ll call my ONCO and the OB today.

Bird

Thanks, Rah. 40 days is a long time! Then you’ve had nothing since? Strange thing was my estrogen was just tested and in menopause has been for 3 years. Guess we will see what docs say.

I called and the OB can see me May 15. I’m a new patient as my former OncoOB only see patients with vaginal cancers. If things don’t slow down, which they haven’t, I was advised to go to emergency. Thank you.

Thank you, wheatfields. Still bleeding so I figure if I am still bleeding tomorrow, I’ll call and nag.

has anyone had dizziness on tamoxifen? Been on it about 7 weeks. Last week started experiencing persistent dizziness, sometimes worse than others. Gets much worse if I sit with my head down (looking at a desk or table). Sometimes nausea accompanies it during the bad waves.

Given my bad luck with health, I am of course worried now I have a brain tumor.

Yes my dizziness comes and goes. I also agree with Prahan, make sure you are drinking enough water. When I am not sufficiently hydrated I can be more prone to dizziness and nausea. I have been on Tamoxifen almost two years now and these symptoms can come and go for me.

Consider adding a daily lower sugar gatorade or pedialyte to your fluid intake as well. As with all things, though, talk to your doctor if it persists even with keeping yourself well hydrated.

Tamoxifen is shown to be VERY dehydrating. Drink lots of water. And when I say lots, drink lots and then lots more. I struggled with nausea and dizziness for a year before I finally found that water was the key. Didn't get rid of it totally but definitely got me to about a 90% improvement!

cassiecanada oof! That is no fun. I described it to a doctor friend as everything just feels kind of wobbly constantly. It's almost like I'm drunk? I've severely increased my water intake (per lala1 and others). The last two days I drank 135-150 ounces a day. Unfortunately I'm still having symptoms. Yesterday riding in the car I got so nauseous I almost had to ask my fiance to pull over. I'm hoping if I stay consistent with the water I will start to see some relief, because this is miserable.

I told my MO about it and she had me in for blood work. All normal. Her first solution is to try zofran for nausea, but the nausea is a result of the dizziness so really I just want to resolve that.

Scoop - it may not be enough to drink only plain water. You may need pedialyte or gatorade to give you electrolytes as well. So maybe try changing out a glass or two of water with electrolytes. Hope that gives you some relief. Also for the nausea - when it really bothered me (and still occasionally does) ginger tea, ginger gum really helped. Hope you get answers soon.

I think today is the first day I seriously wondered if it was time to toss in the towel. To quit tamoxifen. 

I have been really down, but worse, in a deep self hatred over my weight gain. All in the middle. None of my pants fit me anymore or stay on. Because I have no waist. It's like putting a dress on a pig. I hate how I look but even more I hate how I feel. My bones hurt, my joints ache, my gut is bloated. Things that used to be easy are very hard. One of the first side effects I had was that suddenly sleeping, moving in bed, was hard and it hurt and I remember waking up after another bad sleep and wondering, when did sleep become painful? But it was. That faded. But now, oh my god, it has been gathering momentum, the pain and creakiness, the joints that lock in place, the arthritis that sprang up out of nowhere in my hands. I'm just a fat, slow, clumsy pail of guts. And I hate myself. I am a ponderous, aching cow.

Today I finished a two day job of sitting on the floor and hacking the dog's hair off with scissors. He is a doodle and weighs almost 90 pounds. He was in desperate need of a groomer but none are taking clients right now. It could wait no longer. His smell was atrocious and he was becoming an outcast. Try and get your dog to social distance. Good luck with that! It took about 10 hours to hand hack his hair off. And when I got up off the floor...because I sat on the floor to do this, let's just say my spine did not get the memo to stand up straight. I hobbled around like Quasi Motto and still am suffering pain. I took an ibuprofen an aspirin in hopes that I don't die of pain in bed tonight. Pain. There is way too much pain in my life! This was NOT my life before swallowing my first tamoxifen August of 2017.

I looked at Hub tonight and gave utterance to something that has been on the back burner in my head for a long time. But I've had it with the fat and had it with the hurt. I said to him, "I wonder if I should go off  tamoxifen and take my chances with cancer."  He said, "I'll let the dog in if you think that's the answer." He's deaf. He hears maybe 10% of what I say. Everything else he's just guessing. I just nodded because fat, aching me did not have the energy to shout at him again. This is fucked. 

Runor my heart hurts for the impact this drug is having on you. You capture so elegantly the difficulties in taking this medicine. I will echo what edj3 says - you are a wise, thoughtful woman and I know you will make the best decision for you because that is what this is all about, living for you. What terrible choices to have to make, no road is easy. Sending you love and hugs.

Thank you, ladies. 

I play potential outcomes over and over in my head: Quit tamoxifen, feel better, get cancer again, die. Stay on tamoxifen, feel like shit,  get cancer again in year 7, die. Take tamox for 5 years, never get cancer again and think, why the hell didn't I quit that damn drug while I was young enough to enjoy life and spend that time not hurting and being a fat blob? Or, quit tamox,  die of covid?  Like....I'm just feeling bleak. And fat. And stiff. Blah.

Thanks for letting me whine. I don't know how comfortable I am going off the drug, despite how much I hate what it's doing. But I might dial it way back. I already only take 10 mg most days. Have since the start.   I suspect that I am one of those people who is PROFOUNDLY affected by tamox and think I would have to quit it entirely, for an extended time, to see any improvements. Like Beaverntx, I also do not lose weight in a month. My weight seems to be really attached to me and doesn't want to leave.