Bottle o Tamoxifen
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I cannot overemphasize the importance of LOTS of liquids! After 3.5 months on Tamoxifen, I' m finally settling on 2.5 to 3 liters of fluids daily to avoid needing a Squatty Potty. Of course the gut slow down from abdominal surgery about a week before starting Tamoxifen complicated things a bit so it has taken somewhat longer to work it all out.
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This drug...it hates me and I hate it. I was pre meno before cancer and regular as clockwork before chemo, had one period on chemo. then they stopped. I made it through chemo with minimal side effects. Started Tamoxifen in June, one week later, my body went haywire. First, the hot flashes, then the night sweats, then the leg and foot cramps, and now I feel the need to go to the bathroom like 12 times a day along with pelvic discomfort. Just great. Visited the Gyno today, and am now scheduled for a pelvic ultrasound. Also, it is affecting my brain. The dichotomy of my brain needs estrogen, my cancer does not. Wish there were a better alternative, there should be.
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Runor - men naturally have more muscle mass (in shape or not) than women, which in turn has their bodies burning more calories to support the muscle, and hence why they lose weight faster and keep it off easier.
Just another perk to being born with testicles....and they complain about having to shave everyday?
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Ha ha Egads, since starting tamoxifen I need to shave every day! The following is a quote from an article about tamoxifen in bodybuilding.:
A study published in the Journal of Endocrinology(3) showed that long term tamoxifen use increased serum testosterone levels by 50% which is certainly a healthy increase. However, at the same time serum estrogen levels increased by a massive 341%. In fact, in the control group in this study, which only used tamoxifen for a week, estrogen rose after just four days. Considering that the subjects in this trial used tamoxifen at a lower dose of just 10mg it begs the question of what would happen if used at the higher dose typically seen in bodybuilding circles.
https://www.predatornutrition.com/articlesdetail?cid=issues-with-using-tamoxifen-for-bodybuilding
I find it interesting to read about the effects of tamoxifen from a body building perspective. Anotehr angle to study and consider, not that I'm taking up body building.
But lately the leg cramps, oh my god, enough already!
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Tamoxifen makes my stomach upset and I've been on it for 3 months. Interesting about the body builders ~my reaction, who would want to take this medication that didn't have to, UGH!
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omg Veeder14 right. Who the hell would ever do that.
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Runor - I'll echo Veeder & Shelabela's sentiments....who in the HELL would take tamox on purpose?!!?!!? Oh a ton of folks do! Over the years I've read a few articles like the excellent one you posted, and personally know three fellas in my gym that take tamoxifen. While the articles state that they're taking it alongside of other performance enhancing meds to offset estrogen surges (ergo bigger 'gainz') my experience has been different. Without really knowing A THING about the drug, they simply pop tamox because someone very ripped and bigger than them has said "Dude, if you want bigger pec gainz, take this pill" Very few know about the serious nature of tamox, or the domino effect that takes place, let alone knowing how or why it works to build chest muscles.
Same goes for steroid use, albeit most know about the 'shrinkage' and 'roid' rage' effect. Beyond that, a vast number are staggeringly ignorant of exactly what they're popping....all in the name of lookin' good...stylin' n' profilin'...oy vey! Can they not see that the shrunken pecker kinda sorta cancels out the huge biceps? I've had a few discussions with these gym regs (once they found out I was on it), and was even offered money for my 'stash'. That one floored me. "Sure, let me sell you my CANCER MEDICATION, the $5 profit I make is worth the risk!" Egads the pusher LOL!! Thankfully the fella that offered to buy my tamox seemed to listen to my diplomatic spiel on the 'evils' of tamox, and actually read the info I directed him towards....he's still taking it, but seriously reconsidering and dogging me with constant questions. Crossing fingers he ceases and desists, but I won't hold my breath, some of these guys (and girls) are seriously into their gainz.
I'm not knocking ALL bodybuilders, a large number of them are surprisingly knowledgeable about the 'cause & effect' and wisely avoid the quick fix method with any drug....and a few that I know could literally be pharmacists. The sad fact remains however, that most gyms have needle disposal boxes in the change rooms. They aren't there primarily for the diabetic member's convenience....they were installed in the hopes that the staff wouldn't have to risk picking up, or the members being stuck by the many empty syringes that are left in large daily numbers on the floor, stalls & showers by muscle enhancing drug users . Yeah, I know, puts ya in mind of Kermit the Frog in the Muppet Movie, riding a bike without holding the handlebars, shouting "Look Ma! No brains!"
PS - I keep sayin....squats and lunges = no leg & foot cramps. Permission granted to tell me to FO (not Florida Oranges)
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FYI - Saw the NP at the medical oncology office today for the first time. She recommended 800 to 1000 iU of Vitamin E to help with hot flashes. A 180 mg tab is listed as 400 IU.
Fingers crossed.
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Meowommy65, no nausea here, but I too started with SEs very quickly. Like Becca, I had frequency and pelvic discomfort, plus a small amount of vag discharge. ... Felt like menstrual cramps or ovulation. I'm 67 and post menopausal! The pain got worse. Called the MO and he scheduled a pelvic and vaginal ultrasound next Tuesday. I had only been on tamoxifen for 5 days when the SEs started. I've been off it for 6 days now and still have some vague achy feeling in my lower pelvic area, a small bit of discharge, and when I have to pee, I really have to pee, no pitting it off.
There have been no meds that I've been able to tolerate. Maybe I'm too much of a wuss, but all the pain really cuts into quality of life.
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I’m just so tired of being sweaty ALL the time. Seriously, it is just so annoying. That and my sore feet - I’m a runner and this is depressing. Every single day I consider just not taking this crap.
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Here is an update after my doctors appointment today. This is a new Gyne for me, my last one retired so I was a little apprehensive at first but I have to say she is pretty awesome. She listened to what I had been experiencing, and was very aggressive in her treatment plan based on my symptoms, ultrasound, and family history. The ultrasound showed a submucosal fibroid in the uterus, which she is concerned about based on my thickened lining of the uterus. At some point in time that will need to be removed. I also have two complex cysts which are still symptomatic, also still running a fever which baffled her. So here is the path of treatment that we will follow. First she ordered an Ovarian Malignancy Risk Test (ROMA) not the C-125 but a more comprehensive risk assessment for ovarian cancer. I have an appointment with an oncology gynecologist on 10/17. If the roma test comes back elevated then there is a higher likelihood of ovarian cancer. At that point both doctors will determine the official course of treatment, ovary removal, cyst removal, fibroid removal, or full hysterectomy. It seems like there is always something going on, I can't wait for the day when I am completely healthy! The healthy me seems like a distant memory now....
Jada
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Nancy618 - I am with you on the "have to pee now" train. There is no waiting, just a mad dash. And it is two - three times for me at night. Sorry to hear that the meds you try mess with your system so much. I wonder if they will consider lowering your dose at all since you seem to have tried everything? Good luck on your ultrasound.
Jadalulu - glad to hear you like your new Gyn. I am thinking I may need to look for one that specializes in oncology. With the very quick onset of uterine disturbances I have experienced, I want to make sure I have an experienced doc watching over me. I have been with my current Gyn for years but her practice is moving towards the dreaded "menopause management" practice. And I agree on dreaming about being healthy. Seems to be one thing after another. I figure this is just the storm we go through to come out on the other side.
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Random thoughts, you can all tell me if I'm bonkers. Follow along ... Tamox makes you pee, it makes you sweat (hot flashes) this results in dehydration which contributes to constipation, which contributes to gut pain. Dehydration is a contributing factor in leg cramps (or so I have been told). Perhaps Egads, being in the gym, sweating, has trained herself to drink more water than the rest of us. Or maybe Florida Orange juice?! So perhaps what she thinks is cramp relief through stretching, is actually cramp relief through better hydration (cause she has that gym bottle of water with her?).
And now to shoot a hole in my own theory, I drink coffee. LOTS of coffee. LOVE my coffee. Coffee is mostly water. I do not agree at all with the belief that only WATER that goes in as water can be utilized by our bodies. Our bodies are designed to wrestle out the water or nutrients from everything that goes in our mouth. That is the entire point of our bodies!! That and to look horrible in a bikini, but that's another story... So my body is fully capable of separating out the H2O that I consume, I should be well hydrated, and yet I get KILLER leg cramps that hurt like an SOB for days after and threaten, constantly, to go off again!
So is it water? Or is it exercise that helps leg cramps.
In conclusion, my theory is stupid. I am leaving now.
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Runor - you're correct that coffee has water, but it also has caffeine which is dehydrating. My DH is a runner and gets leg cramps at night if he doesn't get enough potassium. Bananas are a popular potassium source, but there are other foods with more:
Calcium and magnesium are also good for preventing leg cramps some of these foods contain all 3 nutrients.
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Runor - Don't ya be running anywhere lol. Your theory is very well thought out and intelligent....not stupid. I mean if we don't stop to question and poke issues with a stick, we'll never get anywhere. Maybe you have a point. Maybe it is the water/coffee/or the OJ (lol). Dehydration is a def cause of cramping. I gulp down approx. 2-3 8oz bottles of water in the gym.....any more and I get nauseous. Outside the gym I consume 2-3 more glasses...not always 8 oz. I'm a coffee lover too (cheers!) so that adds to the liquid intake.
Here is the thing (for me), when I take an occasional break from the gym (can be as long as 2 weeks) I up my water intake to compensate for what I drink at the gym......add to that the coffee and overall I'm consuming the same amount of water and not losing to gym sweat. The HORRIFIC, mind blowing, Linda Blair Exorcist, feet involuntarily twisting into pretzel shape cramps return within 2-3 days of my break....and happily continues to torture me until I return to the gym. So at least for me it would seem to be the squats and lunges (which are weight bearing exercise, not stretches)doing the trick.
So let us take this out for a test drive.....your theory is a good one and deserves attention, so for the common good I'll take down my post-workout intake to 1 8oz glass and limit coffee to a quarter of the usual staring next week. I'm really curious to see what comes of it. If it is the water the cramps will come roaring back with a vengeance by about Tuesday night - Wednesday morning. I won't do anything out of the norm in the gym barring the water.
If my theory is wrong then we all may have another method of combating the leg torture so many of endure. Win-win as far as I can see!
…..well except for the limited coffee intake....I better warn the hubs.....I'm no June Cleaver on limited coffee
))))))Edited to add: Good point GoKale, magnesium can def help.....but in my case I didn't start taking it until last year and I had basically no problems long before starting on it. That said my NP reported that 50% of women see a reduction in leg cramps from the mag.....I can't say for me, but I did find that my sleep was MUCH improved though.
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Oh Jada, I'm so sorry. The only good thing is how aggressively they are treating you. Better to find out now. Glad you went to the doctor!
I have my US next Tuesday.
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I've been taking magnesium for several months and I have to say, while I get bone pain and joint stiffness, I don't get cramps in my calves like I did. I use Solgar liquid calcium and magnesium citrate.
Along with that, I use MO Maggie magnesium lotion at night. Sometimes it works, sometimes it doesn't for the achy knees and hips and pain behind my knees.
I wish there was something I could definitely say helps, but I take so many supplements and rubs and yoga and walking... hard to tell if nothing is working or if I didn't use it, would it be worse.
I, too, want my old body and health back! I just told my husband that I think between chemo and radiation, (I only had rad), I don't think your body ever fully recovers.
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Nancy - try switching out to magnesium bisglycinate or magnesium glycinate. The citrate type is poorly adsorbed, and can cause tummy issues (the citrate type is used in colposcopy preps and for constipation, so it can cause diarrhea, especially if you have any GI issues). The bis glycinate or glycinate type doesn’t have this effect & adsorbs well. Switching up might take the edge off the achy joints. As always, best to run this by your PCP or MO. I doubt it would be an issue if you’re tolerating the citrate well. Keep up the good work with the yoga & walking....that helps everything...mind, body & soul 0
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Today I am stopping Tamoxifen for awhile, I need to know if the pain in my torso and head is from it. Is Tamoxifen intensifying the arthritis they say I have? Is Tamoxifen causing the bruised feelings in certain areas of my torso? I massage an area (say head for headache) and then there is this painful bruised feeling in that spot. All I know is that today the pain feels like it's my spine and goes down my legs currently. I am hoping this will ease up as the day goes on.
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vampeyes, let us know how you are doing. Remember it will take a good while for all of the Tamoxifen to leave your system so immediate relief would not indicate that T is the culprit. Hoping you feel better soon.
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I will, it will be good to know at least to eliminate the drug from the list of things it could be.
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vampeyes, I am sorry to hear that you are having bad SEs from tamoxifen, and I hope you find something that helps. It may take a while for SEs to subside, at least that is the way it was for me with arimidex. For me, so far tamoxifen does not seem to be a problem except for infrequent odd muscle cramp or threaten of a cramp in left calf area. This can happen during activity, during rest, during stretching. I remember this happening 8 years ago when I took it for 5 years. I am taking it now, and my DR said it is probably the Tamoxifen. She said to take magnesium if I think it is helping and to consider potassium as well, maybe use electrolytes during exercise. Sometimes I wonder if the occasional insomnia is also from the tamoxifen, but I do not seem to get hot flashes. I switched from arimidex to tamoxifen after SEs of joint stiffness in hands and trigger finger. Those SEs came on almost immediately. I quit arimidex after after several months, and it was several months before the SEs seemed to subside. I use turmeric in my diet as well as taking curcumin supplements, which I think helps with the joint issues. I think acupuncture helps as well.
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in hands. Started tamoxifen March 2018.
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egads007 - thanks for the info on magnesium, and avoiding citrate. I just checked what I am taking and it is Magnesium (magnesium oxide, aspartate, citrate, taurinate, alpha-ketoglutarate)/ Potassium (as citrate, aspartate, alpha-ketoglutarate). My BMs have changed over the last 2 months or so, and I seem to be more gassy, maybe it is the supplement. I do not know what the previous (Magnesium only) was. Another person told me she found that if she took magnesium at night vs morning, it seemed to help with getting to sleep and not waking up in middle of night. Has any one else noticed AM/PM differences ?
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in hands. Started tamoxifen March 2018.
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Thanks BlueGirlRedState. I hit up the chiropractor today, he did some adjustments and massage, it helped quite a bit actually. I left the house almost shedding tears in pain and now it is back to regular pain. I am not use to all this pain. I am going for massage therapy on Monday and I think it is time to try acupuncture, willing to try anything that might help. Already on Curcmin, magnesium and a few others as per my Naturalopath. I took 3 weeks off in May from Tamoxifen and I felt awesome, so of course I blame all bad things on this drug. haha
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BlueGirlRed - You're welcome! I made a post on the Paleo Pals thread recently about magnesium and the different types if you want further info....also has a simple but decent chart for choosing based on individual needs. I'm not surprised to read about your GI experience as the same happened to me when I first waded into taking magnesium. I think it’s def worth anyone reviewing the type they’re taking. The magnesium post is the 6th entry on on page 35 of the Paleo thread if you’re interested.
As for your AM/PM question, I take mine AM, but have just recread it’s best PM. I’m going to switch...hoping my improved sleep gets even better!
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Can I ask for a favor from you ladies? I'm trying to convince a very special young man in my life that he is on to something. Would you please help me convince him by reading through and giving your opinion? Since it's likely not wise to publish his name on a public forum and his first name is pretty unique I'll just call him T for short.
T is the youngest son of one of my best friends. What makes him so special and remarkable? T is growing his gorgeous hair out to donate it to make wigs for children who are fighting cancer (did I mention he has gorgeous hair even first thing in the morning?). Yesterday, his mom sent these photos over giving me a sneak peek of what he's been working on in his spare time: keychains with meaning (he makes each one by hand). He made me a pink & silver one with the cursive 'hope' charm and a purple and silver one with the 'believe' charm in honor of 2 of the cancers I've fought. I'm so excited to get mine this week! I told him I think he should sell these and offer customization of colors and charms and think about donating all or part of what he makes to one of the research charities dedicated to finding a cure for stage IV cancer. What do you all think? Would you buy one? What price point would you suggest? I was thinking METavivor for the donation...any others you would suggest?
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Lula what a wonderful little man T is! So very thoughtful and very creative of him. I would buy one for a friend who has scaleroderma and of course one for myself! What about $5 each?
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Oooh, love the key chains.
Egads, your cramp description was pretty spot on. I had an epic cramp over a week ago and ever since it threatens and threatens. I mutter under my breath, "Don't you dare, you bitch.." as that thigh, from groin to knee, gives me little warning shots. You have to wonder if a cramp is really just a cramp when the pain is still intense a week later. Like, how much muscle twisting and ripping can be qualified as 'just a cramp'? When I get one of those bad upper leg ones, I can't even stand up straight. Everything spasms so badly that upright posture is not possible. I do my Quasimodo shuffle / drag, moaning and drooling, knocking into furniture in the middle of the night. Often shrieking things like, Holy Shitballs this HURTS!.
At first my shoulders and elbows and wrists were stiff every morning. I was like one of those creaky praying mantises lurching along a leaf. Now the hips are going. Both at once. This is not age. This is tamoxifen. I bent over the other day and thought, gee, that's weird. I've never had a hard time bending over before. So I bent over again. Yup, that hurt. Bent over again. Ouch, when did those joints get so stiff? Bent over again. I'm like an idiot who can't quit slamming their hand in the door. Had to do it until I was sure it was hurting and I wasn't imagining it.
Winter is coming. I have wood to split and snow to shovel. All creaky and gnarled up. Oh, this is not going to be good.
Going to check medicine cabinet to see if I have mag. or pot. I will swallow them down with coffee. Booyah!
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Life has been so crazy I haven't had time to post! Someone asked why I couldn't wear my pretty VS bras. The truncal LE has me in a "swell spot" and compression bra. Without the swell spot (it's the wrap one) my breast was turning to stone! I would get fibrotic knots all through it. My arm swells very little and this time of year my hand swells to. The compression bras are very ugly with HUGE zippers and hooks in the front. I tell my DH let me see you do this one with your teeth...lol. the swell spot make my boob look like a spider Web so DH sings spider tit to the tune of the theme song from Spider-Man. I fought wearing all this crap but when I gave in and wore it 4 weeks at the "order from my OT" I realized my boob felt squishy and didn't hurt without a bra. I had my surgery 2/7/2017 and had signs of LE since then. I was diagnosed in March 2017 and fight the bitch daily!
I get so angry when I read about all the SE some of you ladies have from Tamoxifen! I didn't realize that Tamoxifen has been use for so many years! Why hasn't there been better options discovered or developed?? I have none of the horrible cramps or joint issues. I drink 86oz (or more) of water everyday and usually have 25,000 steps in everyday. I do have the "Omg I have to pee NOW!" and a little brain fog. The brain fog is so annoying! Especially when I'm trying to filter through what 3 grandkids at once! Plus think about which direction I'm driving. ..one thing at a time now please!
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I’ve been on tamoxifen since June 18 of this year and overall I feel I’m tolerating it well. I just turned 34 last week so hopefully as I get older (will be on it until I’m 43!) I continue to tolerate it well. I do have to agree with the ladies above about the peeing! One second I don’t have to go and the next I’m practically running! I have also noticed I’m very irritable!! Every little thing gets a on my nerves . I’m hoping that will get better as time goes on too, that it’s not so much tamoxifen related as stress relate.
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