Bottle 'o Tamoxifen

Shela, I just refilled my 90 day supply of T and no copay either! When I filled the first 90 day supply back in January it was a $30 copay. I was surprised no out of pocket on this second refill. I haven’t met my insurance max for out of pocket for this year when I refilled it either.

That would be nice to lose weight. I gained 20lbs the last two months of chemo (thank you decadron). I lost 10lbs of it so far, but I can't seem to lose anymore even through I eat okayish and workout 4-5 days a week. In the beginning of all this after my dr told me I would be bald, constipated or pooping my brains out, exhausted, and nauseous I asked him if I would at least lose weight and he told me most likely I would gain 😕

My MO told me the first day I met him to get my Tamoxifen prescription to be prepared...most of his patients gain an average of 30 pounds in the first year on it. I'm bummed I gained 10 but thrilled it wasn't 30. Now I've been off it for 2 months and haven't lost an ounce. WTF?! I had envisioned it just falling off, literally, like I'd be walking down the street and people would say "Oh, Miss...you've dropped a couple of pounds back here." Seriously? Five year of the Tamoxifen b.s. and it's decided to just stay with me forever?! Not a happy camper. And to top it all off...I had the usual discharge while on it and now that I'm off, the amount has like tripled! I'm like a fat faucet that can't stop dribbling. I'm dry all over except my poor lady garden has flooded. My gyn has sweetly called in a RX for me so crossed fingers that brings me to normal, although with my luck it'll be the opposite and now I'll be sahara dry ALL over my stupid body. And here's another crazy... all my life I've had very fine thin stick straight hair. About 8-9 months into Tamoxifen (keeping in mind I had no chemo or rads) I started to develop curl...not much, just in one spot over one ear. Crazy. My hair dresser was flumoxed. Fast forward 5 years, I get a haircut 6 weeks ago and my hairdresser says "Well darn. I'd really hoped coming off your meds would cause the crazy curl to go away but we'll give it another 6 weeks and see." Fast forward again to today. I go in for a haircut. She wets it and just gasps. My hair springs out and is pretty much curly all over!! What the hell?! I have never had anything like this. Literally in 6 weeks it went from stick straight with one curly spot to curly all over! It's like Tamoxifen said "I didn't mess with you enough while you took me so I'm going to just throw it all at you now! Think I'll ever get past the surprise SEs?

Oh my! Now I need to charge up my Fitbit and see what happens!

So I’ve lost 5 lbs (from being sick) and I’m UNDER weight according to my doctor. Gain weight, he says. Ummmmmm hello? I’ve been small all my life. I don’t know HOW to gain weight. I eat all the time. A lot. We had hoped the weight loss wouldn’t be permanent, but two weeks later I’m still not gaining. Runor, I swear I was laughing at the butt crack thing (I teach school and the boys ALL drive me crazy with the sagging skinny jeans and the “I’m wearing shorts so you don’t see my underwear”). Today when I got home and changed clothes, I didn’t even have to unbutton the pants. They slid right down. SO of course I’m giggling about what I if that had happened at work. Maybe I should invest in a good belt

Does Tamoxifen make you more sensitive to the sun? I’ve read through the SE’s etc and see nothing, but a few people have (annoyingly) insisted that my beach days will never be the same. Thanks.

VL22

Are people getting confused with the side effects of radiation? I haven't heard of tamoxifen causing sunburn, didn't notice any difference last summer.

Red - hope the magnesium helps you as much as it has me! I put off taking it until this year and I’m really peeved at myself that i waited so long. Never slept better in my life! Not sure of the muscle spasms as I pretty much obliterated them by weight training...I’m sure the magnesium is not hurting though. As for inflammation, you could try cutting wheat and grains/legumes out of the diet for a test period of time. I did and it’s insane how good things are...ulcerative colitis, acid reflux, arthritis knee pain GONE. After 9 months my gastro doc said my colon has completely reversed to normal (was a mess). Can’t wait to see the results of the next bone scan!

Much luck at your gyn appointment, keep us posted

Loving - I had never heard of a squatty potty so I just googled. The whole concept makes great sense. Also looks like it works for tons of people by the reviews....which is a great thing! What I couldn’t get past without breaking into gales of laughter was the following squatty potty ad:

Royalty LOL!!!! Wonder if this model comes with a crown and sceptre!!??!

Sincerely glad it’s so good for you

My dad had colon cancer and suffered from an intestinal blockage - this ingenious device actually worked quite well for him. Their advertisment though is comical....

mucki

No, sadly not! My energy levels on a good day are the same as ever, but sometimes I struggle to make myself go for a walk or do some gardening. And I had terrible mood swings and anxiety, and take an antidepressant to counter the effects.

But I think I've got away fairly lightly, compared to many. And I'm definitely grateful for the extra estrogen which gets to the ladybits, thats definitely been a plus.

Mucki, back in the 70s my mom went on a diet candy. A once a day caramel. She lost weight like crazy. She had the stamina and vigour of 10 men! She got more work done in a day than the average person does in a week! She would just FLY around doing housework, yardwork and ranching. Happy as a clam, getting stuff done. Then it was discovered that having tens of thousands of housewives taking a daily dose of methamphetamine was a bad thing, and the diet candies were pulled off the market. My mom has not been as efficient, happy or skinny since. I believe you are describing the effects of speed, not tamoxifen. Sadly, they are SO not the same.

hahahaha - Mucki we all wish that were the case.

Runor now I want to risk that little diet candy! Skinny, energy and happy - OMG I would be in heaven. gimme!!! lolol

Loving you lucky girl for the break, I do hope all comes back good with the EKG. Your cough, was it all the time? Did your chest feel like you ran a mile (if you are a non runner), the burning feeling when just sitting or lying around?

Cheryl

Mucki1991- when I first started my Tamoxifen, I felt worlds better than before I found my cancer. My energy was back, the hot flashes hadn’t really kicked in yet. I’m not prone to hormone mood swings or moodiness, so I can’t speak to that. My husband told me when I was pregnant that I’m the only pregnant woman he ever met who was “normal”! And in his family, there’s a LOT of children!

Then rads came , then pneumonitis, and ruined me for months. Finished steroids in March, I’m JUST starting to get back to normal again. Feeling pretty good though. There are a few threads about doing well on T. It helps that I was never a good sleeper, so the hot flashes waking me up is not that different.

Good luck, I hope you keep doing well.

ThreeC - I wish my gym had a pool! Let us know how you get along with gym shopping, should be helpful for you!

Lewhy - YES! I used to watch my feet curl up and once saw my calf muscle literally turn backwards! It took weeks for the pain to subside. Awful! As I keep beating everyone over the head with, exercise has obliterated the legs spasms, specifically weight bearing lunges and squats...killer but works! Worth a shot

I have a very active job that requires a lot of walking, i think i put on 13000 steps a day, with 10-12 flights of steps added in there. So i get plenty of "exercise" my leg cramps still come and go.

Has anyone noticed that you bruise easier now? I barely bump into something and get a huge bruise.

The weather is finally getting nice here. How about where you are?