Bottle o Tamoxifen
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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
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Vampeyes - I cannot get back in to the survey to read the results - maybe post statistical updates once and a while here on this thread?
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can you pm me the link for the survey if you want more replies?
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vampeyes, i take the name brand nolvadex. Still have SE. But worth a shot to try
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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.
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Oh Runor thank you for the laugh, male pattern weigh loss. lol I will have to go figure out how to add in my completion date, I finished Feb 28th. I also want what brand you are on. I have gained 10 and tons of inches. UGH. Although the fact that I love food likely isn't helping my situation. lololol
I chickened out of stopping. What I did do was I took it in the morning and moved my Trintellix (anti depressant) to bed time. I got thinking that this isn't my first rodeo with fatigue, I had an iron infusion in 2014 so there is something else going on even if my blood work says there isn't. I get winded climbing stairs.
tlfrank here is a link to the spreadsheet - https://docs.google.com/spreadsheets/d/1yCl8Tu6fcj... So far we have 25 responses to the survey. I posted it in our facebook support group and some of the ladies filled it out.
Shelabela - what kind of SE's do you have with the name brand? Had you tried the generic at all first?
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Runor---You are always good for a LOL moment! Keep it up. Your stories truly make my day!
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vampeyes, no my MO prescribed the name brand and my insurance actually did not argue. My MO is very persuasive. Lol.
My SE: tired, joint pain, headache, massive hot flashes, night sweats. No hair loss yet, no weight gain/loss.
I went on Effexor for the hot flashes and it seems to help so far.
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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!
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SadieSue09, I was also on Paxil and had to switch off of it when I got ready to start Tamoxifen. My MO tapered me off Paxil and on to Effexor a month or so ahead of when she meant to start me on the T. I was taking Paxil for anxiety, depression, and migraine management. I found the transition a little bumpy. I haven't had anxiety issues, but I have had to work harder on maintaining my mood than before. (It being dead of winter didn't help.) The migraines were a little more of an issue for a while. I started with Effexor twice daily, but then my Primary Care Provider switched me to a once-a-day timed-release. (I had some problems with nausea during the transition too, but my body is kind of like that in general, and we were switching around a couple other meds too, so it is hard to isolate what caused that.)
I am about 5 months since the transition to Effexor, and about 3 months into taking Tamoxifen. I think things are beginning to reach an equilibrium. Effexor is supposed to be helpful for hot flashes with T. Given the number of issues that I have had with hot flashes, I wonder how much worse it would be without it. Overall, I think I am tolerating the switch well. I think the benefit outweighs the downsides.
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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.
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runor and ThreeC, I would love to get coffee with you and just listen to you talk. Thanks for the smiles this am!
I don't know if it was the nice weather, the change of my Triltellix to bed time or a fluke. I didn't have a lot of energy, but I was able to get myself out of the house and do things! I went for a bike ride Friday and Saturday, went for a big walk with the kids yesterday. I actually got a little burned, now my back matches my front!
Whatever gave me this new found energy I hope it stays and I really hope I don't crash for the next week!Anyone else have a nice weekend?
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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.
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Hey everyone! Been lurking for a week or so and wanted to say hello. I am 52, and it was unclear if I was in menopause or not before chemo, so I started Tamoxifen about 10 days ago. So far interrupted sleep is my main side effect, I think. I already had hot flashes from chemo (tolerable) and they are continuing but not worsening. I had already been taking Trazodone for sleep for a couple of years and my MO never mentioned anything about interactions with Tamoxifen. I only found out about the potential from this board. I have read differing opinions/studies as to whether it should be avoided or not (like paxil, etc.). Also, does taking it in the AM (away from the Traz) help or not? I will see the MO next week and will ask her then. I'm just not sure what my options are. I would normally up my dose of Traz but nervous to do that now.
I am also on herceptin (for 6 more months), so the side effects may get blurred between the two.
I am also what i can only call "skinnyfat". I think it's from the herceptin. I have lost about 12 pounds since diagnosis (mostly AFTER chemo) and am thinner now than I have been in 15 years, but the skin is just hanging there. and i am hitching up my pants all day (even my skinny jeans). not complaining, though. at least not anywhere other than here. :-)
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WHY OH, WHY can't I be one of the .01% that has weight LOSS on this drug?
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trvler - the prescribing doctor made this comment to me when starting Tamoxifen - "you'll probably gain weight, no matter how little you eat" I'm maintaining steady, but am very calorie conscious.
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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.
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I started Tamoxifen a little over a month ago. No huge side effects, so far. Did have a bit of insomnia, but that has waned. Dry mouth, some cold chills. I started having low pelvic pains about two weeks ago. I went to the gynecologist, and she scheduled an ultrasound for this week. I had an ablation three years ago, and I've not had a period since. Well, today I started bleeding. I just want to cry. Has anyone had this happen?
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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
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Red332- I went to a walk-in clinic a couple of years ago & the doctor I saw asked me if I had a smart-phone. He proceeded to put an AP on it that keeps track of my meds, let's me know of any interactions, and can be handed to any doctor who wants to add something new. It's called Epocrates. There is a free version and a more involved version for those in the medical field. I put in the trazodone and it did not show any interaction with Tamoxifen. It did caution use with Ecotrin, Tylenol, Xanax & one of my BP meds. You might want to check it out.
Teachermomfl - I also went to my gyno last week because of pain and had an U/S. I have a history of cysts on my ovaries and have had an abalation too. He did find another small ovarian cyst he will monitor but everything else looked good. I have confidence in his plan. He always does a thorough exam and was the doctor who found both my thyroid disease and a uterine mass on my first visit to him.
Runor- I get the problem with upper body strength and yardwork. I have always cut back our bushes. I actually enjoy it. When I retired I bought myself a lightweight, battery-powered hedge trimmer. I use it a lot. This past year has been hard because I just don't have the energy. I'm hoping the SE's from Tamoxifen will give me a break so I can get out and do some yard work. Fatigue, dizziness & power yard tools are not a good mix! The weather is perfect for being outside though. Random thought- I have deficiencies in vitamin D3' magnesium & calcium as a result of my Thyroid Cancer & damage to my para-thyroids. When I get muscle cramps I pop a couple of tums, a magnesium capsule & or some Gatorade. It helps stop the cramping. You might ask your doc to check your magnesium & calcium. Low levels of both can cause cramping.
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Thanks ThreeC, I'll have a few Tums with my wine. Living the high life!
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RED332 and Runor - I have the answer for your plumber butt!!! SUSPENDERS
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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.
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Shelala- last year after I met my deductible and out of pocket, I Had no-pay for any of my prescriptions. This year, new insurance - BCBS and although I have not yet met my deductible or out of pocket, there has been no co-pay for the tamoxifen, although there has been for other prescriptions. I guess they really want us to take this drug
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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.
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runor I too have lost weight on Tamoxifen, close to 20 lbs in fact and I started the drug the first week of February. The first thing that everyone says when they see me is “wow your so skinny” and as you said skinny on a 47 year old is not necessarily a good thing! I feel like I look sick, not exactly what I want.The only other side effect that I think may be attributed to the Tamoxifen is possibly muscle spasms in my back which have now started only at night. I have just had my exchange surgery last Wednesday so it could be from that too, not sure.
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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 😕
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I am meeting for the first time on Monday with my oncologist. I have ADH and has a wire excisional biopsy 2 weeks ago with a negative finding of cancer. My BS suggest I start the prescription medicine protocol as a preventative. After reading many, many and many posts I'm now very confused. The side effects sound horrible, especially hair loss which I'm thin to begin with. Does anyone regret starting tamoxifen even after enduring such terrible side effects? Is it worth being miserable for the fear of something that may never happen again? Just trying to figure it all out and make the right decision...
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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?
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Well Ladies I recently shared that my MO's office sign said to find something to laugh about every day! As many of you know, I use this site at times to share my weird humor. Well just a few minutes ago I searched for info on breast cancer and itching. My left breast is driving me 😜 crazy. Soooo I found a thread on this site. Well I'm still laughing....I blame it on Tamoxifen SE's. Some poor person on that thread still has several of the titanium clips from surgery implanted and started having itching every time she put on her blue tooth fit bit. Turns out that titanium is a conductor of blue tooth signals.... Now I want to go on Amazon, order a Fitbit and leave a review that states my new Fitbit works well with my surgically enhanced boobs!!!
Off to find some anti-itch cream before I really go off the deep end. Smiles to all!0
