Bottle 'o Tamoxifen

Vampeyes the only thing that works for me is a consistent exercise regime. When I take occasional breaks I turn into Rip Van Winkle. I’m sorry you’re suffering

Hi everyone, I checked with my insurance company and as long as my MO writes no substitutions on the prescription, they will pay for the name brand.

As far as the fatigue, i am considering asking for Ritalin. I am tired all the time! I thought i read somewhere that Ritalin is sometimes given with Tamoxifen. Has anyone else heard this?

I too find I'm more tired than prior to tam. My worst times are getting up in the am. I used to, not that long ago , get up at 530 to get a work out in before I started my day. Now it's work to get up at 645 in time to get ready and take my girl to school and then head out for my day. Prior to chemo and tam I could get by easily on 7 hours sleep. Now I'm back to 9 to 10 Just to feel rested. I know some ladies on here who are needing more than that. I don't have any answers. I just keep on keepin on

I have decided to stop my Tamoxifen today for a bit to see if there is any difference. I use to work out all the time, ride my bike for 80+kms, now it takes everything I have to finish a workout video or go for a small walk. It's frustrating. I have also made an appointment with my GP, maybe he will have some answers??

Side note: we have 25 responses to the questionnaire so far, it's nice to see I am not alone with some of the strange side effects!

Cheryl

can you pm me the link for the survey if you want more replies?

Vampeyes, there is no date for when you completed radiation, but that takes a lot of wind out of a person's sails too. Now, I am NOT saying that it's not the tamoxifen causing your exhaustion. But the recovery from radiation is long and slow. I wasn't even over my radiation and I started tamoxifen so there is often a blending and overlapping of physical effects and it can be tough to figure out what's causing what.

Also, with stopping tamox to see if symptoms change, remember that tamox hangs around in your system for quite a while after you've stopped taking it. So if you stop for two days, it's not going to tell you much. Do not take this as medical advice ... but have you considered taking half a pill a day instead of the whole 20mg? Or take a 20 mg one day, then half a pill next day, then half a pill next day, then a whole 20 mg. I think if you feel comfortable going off, then tweaking it a bit to see if it eases symptoms (while still providing more protection that no tamox at all) is not out of the range of possibility.

Aside from hair loss, leg cramps and suddenly my shoulders being seriously problematic, I am losing weight. I know. This makes you all terribly sad for me. But it's a little alarming. I have spent my life being a perfect cow, I get fat on nothing but fresh air! But I just keep losing weight, or more to the point I am losing my butt and thighs, but still keeping middle age belly and I walk around with plumber butt because my damn pants keep falling off. Is this male pattern weight loss, no ass, all gut, to go along with my male balding? Not loving this. After a certain age weight loss just deflates you as opposed to making you svelte. I don't look svelte. I look melt.

Runor---You are always good for a LOL moment! Keep it up. Your stories truly make my day!

OK All.... My body has developed the SE I am calling "Drunken Sailor". I visited my GP told him I was 😵 dizzy, no nausea. He prescribed antivert which turned me into a "Drunken Sailor who is sleeping it off". He alsosent me for a carotid artery U/S and a CT of my brain. Both were negative for new issues. I can't take the RX and stay awake. I've done a little research and I'm not convinced it's actual vertigo. I really feel like the blood supply to my brain is being syphoned off. The deck of the boat is unstable and I'm wobbling. It seems to come in spells. Yesterday was about an hour & today has been several hours.

Runor, I'll trade you my Drunken Sailor for your Male Pattern Plumer's Butt SE! I don't see how I can take T for 5 years! I'll roll off the deck and be lost at sea!

ThreeC, after the age of 22, walking around with your ass crack on display is just not that cool. Well, it's cool as in breezy, but not what anyone needs to see at the grocery store.

Have you had your blood pressure checked? When my blood pressure is too low I get all woozey and winded for no reason. Bending over and standing up is an invitation to pass out. It seems worse since I went on tamox so I wonder if my blood pressure meds need tweaking. My new doc, who is very on the ball, ordered blood tests and cholesterol tests and I am supposed to not eat or drink anything for 12 hours before I go in for the test and every night around midnight I have a bite of something and a big slug of wine. Darn, guess I can't have that blood test tomorrow morning.

ThreeC I hope your woozey sailor business passes or someone can tell you what it is.

Morning all. I just finished my cup of coffee and enjoyed reading your posts.

Vampeyes- Coffee Club Chatter- My MO has a sign in her exam rooms that has hints to make life better. #1 Is: Find something to laugh about every day. I read this site (several forums) and make visual pictures in my head. My DH can't get why I am laughing 😂. I try to share but he doesn't have my virtual picture in his head. My drunken Sailor & and Runor's skinny plumber cause vivid amusing pictures in my head. There's also some piece of equipment called a "Squatty Potty" on a constipation thread. I have been visualizing what the item looks like and I make it so odd that it makes me laugh. I haven't dared actually look 👀 it up because that might take my amusement away. So glad you were able to get out & enjoy the weekend with your kids. It's those moments that keep us going.

Runor- Well, your breezy plumber gives me a smile. I have had my BP checked and own my cuff. That and low blood sugar were my first investigations. I actually made a data base with dates, times, activity, BP & Blood Sugar. I look the list to my GP. In addition to BC & Thy-ca I have horribly high blood pressure (3meds to control) and am Diabetic. I read that Tamoxifen can effect those meds and cholesterol meds too. But, all my levels are normal. According to my MO Tamoxifen can cause dehydration which in turn can cause dizziness. I am forcing myself to drink lots of fluids but It hasn't totally stopped "the drunken sailor experiences ". Thanks for your suggestion though. Maybe some of my meds could be reduced.

WHY OH, WHY can't I be one of the .01% that has weight LOSS on this drug?

Red332, ha ha, skinny-fat. SO true! I am blubbery, sagging, crepey, wobbling, just a whole bucket of ooey gooey grossness.

And the pants! The struggle is real! Yesterday Hub and I were out doing yard work, picking up branches and mess and hauling it to a fire. My stinking pants are sliding off. It's coolish so I have a light jacket and work gloves on, pretty covered up, except for the strip of flesh at the top of my ass every time I bend over. Mosquitoes, hungry vampire like things, spy this strip of exposed flesh and the ONLY place I have mosquito bites - my ass crack! So now not only is my butt crack on display but I am walking around scratching it. Oh my god. When did this become my life?

Side note: for the first time in over 25 years I almost could not manage the physical work of dragging limbs out of the bush and lugging them to a fire. My upper body strength is diminished. I use a large pair of loppers to slice limbs and willowy growth and I have trouble exerting the same amount of force I used to because my shoulders are really starting to hurt me. Especially on the lumpectomy side. But worse than that were the leg cramps! I have had leg cramps in bed at night since starting tamox, but only in bed. Yesterday, my ankles and shins were cramping so bad I almost fell down a few times. Twisting my feet off in odd directions, I was staggering around like an ass crack showing, drunken sailor ( ThreeC style). That was new and I was NOT happy about it. I drank a lot of water in the evening to combat that. Okay, it was mostly grape juice and it was mostly fermented but still, liquid.

Teachermom - putting my hand up and saying 'me!' The exact timing as you....started bleeding within a month of taking tamoxifen. I ended up eventually having a d&c after 2 hystersonograms and 1 in office polyp removals. The d&c found a bunch of polyps and my uterus thickness at 17 mm (normal is 5). Since the procedure I've had no problems and I'm holding steady at 4mn. When I asked my gyn if tamoxifen could cause all this so quickly she replied 'oh hell yeah". Don't cry, it's probably (as my gyn said) preexisting polyps that are feasting on tamoxifen. I know it's scary, just follow through with the doctor, chances are you'll be fine.

Edited to say: that was 4 years ago..no problems since

Thanks ThreeC, I'll have a few Tums with my wine. Living the high life!

runor, omg the struggle is so real. But skeeter bites on your butt crack. Omg. How horrible. I have dropped 2 pants sizes since starting this beautiful journey. 🙄

A question for you ladies about how your insurance covers Tamoxifen.. . Mine is now actually covering 100% of it! Before there was the standard coverage. And i know i haven't metmy deductible. They said a letter is on the way. Not that I'm going to complain.