Bottle o Tamoxifen
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SLL, had to chuckle at you being irritable. Hub would say that I am intolerant and irritable. That the tamoxifen is making me hyper critical. No. No it isn't. But if you insist on making those noises while you chew and throwing bits of chips and peanuts all over the living room carpet while you eat and watch tv and make noises like a hog, ONE OF US MUST DIE - and it's not going to be me! Honest to god, listening to him eat almost gives me seizures. This is not tamoxifen, this is bad table manners!!
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Runor lol!!! You described my life exactly!! Thanks for the laugh
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runor- I bet if we took a poll all of us have that issue with hearing people chew/eat now even if we didn't have it before - LOL! Every little thing is aggravating. DS is chomping ice and slurping tea from the bottom of his glass of crushed ice as I type...I'm about to go off!🤯 And it's actually a recognized mental health disorderbelieve it or not! Just give those suffering from it a little estrogen and it might go away!
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thank you ladies for making me not feel crazy!! My husband is getting over a cold and has been walking around haking up phlegm and spitting it out....I’m over here gagging!!
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Hubby is a tooth sucker. I do not even know how he can make that assortment of sounds, but he manages and it is getting worse. We fight about it all the time! I think part of the problem is that over the last few years he has gotten deafer and deafer and quite literally cannot hear himself. (he wears hearing aids.) Plus he wears ear buds to listen to the tv. So there he is, plugged in, remote in hand, sucking and slurping and smacking at the food stuck in his teeth while death lasers shoot out of my eyes and bore into his chest. This does not seem to harm him for some weird reason.
Finally, after I have winced and cringed and my scalp has lifted off my skull I scream WILL YOU STOP THAT! Then he looks all hurt and shocked and stupidly calls me intolerant and hyper-critical. When what I am, is trying not to stab him in the neck with a nail file.
Then I say something sensitive and mature like, " Really? REALLY? I am sensitive and critical? On the day I was born did someone run into the delivery room and read a pronouncement over my still wet body that I was to end my days subject to the annoying and repulsive sounds that you mindlessly make with your mouth every damn day of your life? NO! NO! That did not happen! So I am NOT critical and hyper and I DO NOT HAVE TO TOLERATE your STUPID bullshit. Do I poop in the living room while you are trying to watch tv? DO I? No I do not ! Because that would be ignorant and gross and we have evolved past that. Same to you buddy! I don't want to listen to these gross, vile sounds that pollute our shared space. If you want to make those noises, GO SIT IN YOUR TRUCK AND MAKE ALL THE NOISE YOU WANT. But if you want to be where I am, quit being so goddamned gross! "
I am not joking. I have screamed this. For 30 years. Tamoxifen has not made me intolerant. But breast cancer does make me ask myself now and then, is this how I want the rest of my life to be? Will I end up divorced or charged with murder? Could go either way!
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Regarding stiffness and achy legs - earlier this year, I was having a terrible time with stiffness in my legs. While I used to be able to get down on the floor to watch tv or do floor exercises quite easily before chemo, I was unable to do this without a great deal of effort until recently. After watching "Forks over Knives" and reading "How not to Die" by Dr. Greggor, I gave up olive oil in my diet. I had eaten salad everyday with a dressing made with olive oil. I also used to stir fry vegetables in olive oil, and any recipe that required oil, I used olive oil. So it was a regular staple in my diet. So I gave it up for health purposes, and within a couple weeks I realized that my legs were not stiff anymore. I had no idea that I was going to reap this benefit. Now it could also be less animal products in my diet being the reason for less pain, but I had already given up all meat and dairy for several weeks before I gave up oil.
I am not terribly strict about oil because sometimes when we are dining out, I can't avoid added oils in food. Oil is in processed food as well. I am trying to cut out processed food, but I still eat some.
So I thought I would share this in case it can help someone.
Vargadoll - I have LE. I went to a physical therapist who specialized in breast cancer patients and she helped me a LOT after surgery, during chemo, during radiation and after radiation. She suggested I wear a sports bra when I sleep at night. So I did that for probably a year or more. Now I really have to keep an eye on my arm and hand and have many different compression things to wear when I need them. Currently, I am able to control it with diet, exercise (cardio and weight lifting) as well as arm stretches and manual lymphnode drainage exercises (I can't remember the exact term for that). I also wear KT tape on my arm all the time. I am happy with the KT tape and grateful it works - so much simpler. Fingers crossed that I can keep this under control. So if you can find a physical therapist who specializes in LE, I think it would help you.
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Runor – The warning shots…..not that they do any good because the spasm just seems to ignore whatever we do to try to stop the onslaught. Case in point….used to happen often…..sit down to pee, wonky feeling starts in calf and foot starts to curl. Shift foot around in impossible angles to try to stop it….nope! Can't get up because you're still peeing…..try to pee faster…nothing works. By the time you do get up your foot has turned inside out. Don't even get me started on the ones that used to hit when I was minding my own business, sound asleep and had to LEAP out of bed to do the 'Quazimodo shuffle'…the minute I lay back down POW, repeat performance.I once watched as my calf muscle literally turned over…..I limped for a week after and considered crutches. My MO: "Some leg/foot spasms actually cause muscle tearing". Me:Is traction covered by insurance?
) Day one of lower water intake underway, and I gotta tell ya, I'm a little more than afraid. P.S. I've never been a patient person, but tamoxifen takes my irritability to a whole new level. Once when cooking dinner with my Hubs he turned to me and said "Now I know what it's like to cook for Gordon Ramsay". I made donkey noises.
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Anyone who has taken a break from Tamoxifen did you have any bleeding after stopping?
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vampeyes, I stopped for four weeks and the cycle that followed was just 24 days vs. 29-31 days. Otherwise, nothing unusual, except for feeling great!0
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Hi ladies,
I hope you all are doing well. Cheryl wishing you all the best with your Tamoxifen vacation! Hope you get some relive from all your pains and can figure out what is wrong. Please let us know how you are doing. I'll be thinking good thoughts and sending you lots of hugs!
I need to vent a bit so thank you all for listening. I went to see my MO today and told her about my shortened periods, mood swings, hot flashes and my ovarian cyst pain. She said to take Tums for the mood swings/PMS and she thought that my periods being shorter were not cause by Tamoxifen. She told me that if my ovarian cyst pain was really bad then I could stop taking T. I'm concerned about my periods being shorter they are down to only 4 days instead of a week. This did not happen before taking Tamoxifen. I know I should be grateful for it not lasting to long, but any change in my body now a days gets me wondering if there is something wrong. I have an appointment to see my PCP later this week so I will talk to her about my concerns and she if she can help me.
What have you ladies done to help calm down ovarian cyst pain? I'm thinking of asking my PCP to send me for some tests to see how big my cysts are because sometimes they really hurt. I want to stay on Tamoxifen as long as I can I've already got one year under my belt.
Thank you Sisters for your help. Okay if any one else wants to vent I'm all ears.
Hugs and Love to all,
Sara
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sm627- I can’t help with the cyst pain but did she say why tums could help with the mood swings? I’m dealing with those and that would be a nice easy thing to take especially if they help!!
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Hi Sara, thank you for the good thoughts and hugs! I would think about seeing a gynecologist in regards to the pelvic pain, maybe there is something they can do for you. I see mine tomorrow for the pelvic pain, seems to have gone away though. Always the way you finally make an appointment, it takes many weeks to get in and by that time the issue has resolved or had gotten so bad you go to the ER. Lol
Tums for mood? I am curious about this too.
Oh Pi-Xi after such a wonderful feeling how did you get yourself back to taking this awful drug? 😂
Today is what day 5 (?) of no pill and I don't feel much different yet. Maybe it's not the Tamoxifen after all?
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vampeyes- the 1/2 life of tamoxifen is 6 days on average meaning only about 1/2 of the amount that was in your blood stream on the first day of not taking it is gone. Every 6 days it will reduce by 1/2 again. It can take weeks/months to see a difference..
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vampeyes, the first three weeks were fun, then I started to get worried about cancer cells growing, but darn it, I was going to enjoy another week off whether I liked it or not.0
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Tums for mood swings? Maybe she said you should take a nice, dry martini, poolside, while a cute, shirtless waiter dips prawns in cocktail sauce and feeds them to you. Because it is very easy to hear that and mistakenly think she said Tums. People get that confused all the time.
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runor---the way your mind works is so up my alley! I come from a long line of people with a very odd sense of humor.
Sometimes I read your posts to my sister and we just laugh and laugh. We always say that you'd be our first pick to get stuck on a desert island with! Your posts really brighten my days. Thank you.0 -
I agree with Runor, save the tums for when you really need them....post-marinti & prawn. The shirtless cutie could feed you them too
PS, wouldn’t just taking calcium for mood swings work better/safer? Tums have a pile of other not so good additives along with the calcium....and I saw no mention of dry martinis on the label either
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Runor - have you ever read the Stephanie Plum series by Janet Evanovich? OMG your last post I thought immediately of Lula - made me chuckle, thank you for that!
Pi - I hear ya, I haven't even made it a week and with the amount of time it apparently takes to leave your system wonder if it's even worth the break knowing I need to go back on it. Your post made me smile "whether I liked it or not" lol
Thanks lula - I am almost wondering if I should just bite the bullet and go back on it. You know the funny thing is I haven't (touch wood) gotten the dreadful hot flashes, so maybe I should just suck up the other SE's....
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Runor- Girl you made me laugh so hard! Thank you it was just what I needed. Keep your humor coming it is the best medicine.
Cheryl: I hear you it would be worth it to take a break from T if as soon as you stopped taking it all the side effects would stop altogether. That would be a true vacation. You do what you think is best for you and we will be here to support you all the way. My mom Loves! Stephanie Plum series by Janet Evanovich. How are you boys doing is school treating them well this year? Hugs
Okay so back to the Tums my MO said that the calcium in them help reduce mood swings and other PMS systems. She also told me another way to help with mood swings is to exercise more and eat more dairy products. I told her I run after preschool children 5 days a week, but she said I need more exercise oh dam!
I love the chains they are beautiful I would pay $5 for them. I hope this amazing young man is able to share is creative gift with others to help them heal.
Can you all please send good thoughts to my mom's friend's Cat she was DX with breast cancer this month. She had a single MX. I think with cats they take 6 nipples on one side. It is just so sad that our furry friends have to deal with Breast Cancer too just like us humans.
Sending lots of laughter, Love and Hugs to all,
Sara
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Hey Sara, I seen the gyno yesterday, sending me for tests - baseline thickening and then checking for cancer due to the bleeding - sounds like those tests are good times! 🙄 I quit being a quitter, doctor didn't like the idea of me taking a break and really what's the point? May as well "man up" and deal with the SEs. Dear God though I was awoken at 4:30 with a nasty Charlie horse in my calf - still hurts! The boys are good, lots of homework and studying this year. I think maybe it's good they are in the same class this year for that reason! How are you feeling?
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Well I met with my Gyno about my US results. All looks good, lining is not too thick . So we figure my perimenopausal body must have decided to houseclean. I literally had what I am calling the "biblical period" - 40 days and 40 nights
So now we move into watch mode. We will US if I have another issue, then biopsy - lovely. My Gyno is a BC survivor herself so we did have the talk about hysterectomy. I just wanted to be able to avoid an additional major surgery this calendar year. So I am going to try not to worry about it.
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One other thing is anyone else splitting their little white pill? I have tried taking a morning dose, but I get so sleepy in the daytime. I have started evening dosing but that gives me a headache. I may switch to 1/2 pill am and 1/2 pill pm thinking a more even level may be helpful.
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Rah, can't help on splitting the pill. I take mine with my evening meal, as advised by my pharmacist and so far that has worked well for me. I do have mild levels of several possible SEs but so far avoiding constipation has been the biggest challenge. I will be interested in seeing what others say about splitting the pill!
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Rah, I split my pill. I take half a pill a day. On Sunday and Wednesday I take a whole pill. If I get a recurrence and die everyone will say it's because I didn't take my full dose. Bullshit. No one knows how much of a dose we need, or don't need, to be effective. The lowest effective dose was never studied and is completely and entirely UNKNOWN. So am I risking my life taking half a pill? No one can say with any authority. The evidence for or against does not exist.
On half a pill most days and a whole pill two days a week I have had the full meal deal of side effects, which I call EFFECTS, because there is not much 'side' about them. My hair falling out is an effect. Hot flashes, effect. Leg cramps, effect. Hair on chin, effect. Drippy bladder and lady bits that are sometimes like the Sahara Desert, effect. Side effects is a misleading term.
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Thanks Beaverntx and Runor for sharing your experiences. I think I will continue with the whole pill at night for another week, then I am going to investigate the 10 mg twice a day route. I have not seen any info on how the drug metabolizes or if there is a fall off, say after 18 hrs or something like that. Who knows the twice a day may make me nuts. But worth the investigation.
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I have been on Femara for 4 years now. I had osteoporosis before even starting, and have a Dexa scan coming up which I know won't be good. I am unable to take osteoporosis drugs.
So I am pretty sure my oncologist is going to want to switch me to Tamoxifen, but she is leery because I have atrial fibrillation, which can cause clots. My afib is infrequent- two big episodes in three years- but dramatic when it happens. It is conceivable that I have it more often and don' feel it, but 30 day monitors don't show that.
So I have declined blood thinners. Cardiologists now say that aspirin is not effective in preventing clots from afib.
Does anyone know if aspirin is still considered effective for clots from Tamoxifen?
Does anyone know if having afib would increase my clot risk from Tamoixifen or is the clot creation from afib totally different from the clot creation from Tamoxifen if unrelated.
I do see, with my amateur research efforts, that I should "talk to my doctor" if I have additional risks for stroke, including afib. The question might be, which doctor? The oncologist refers me to heart doctor and vice versa!!
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so tamoxifen causes clots by increasing levels of estrogen in the blood. The higher estrogen levels are because the tamoxifen is blocking the estrogen from being used at the cellular level. This may (or may not) cause additional estrogen to be produced. With or without additional estrogen production, there is excess estrogen and it basically can make your blood cells sticky. Too many stick together and voila! A clot is formed. If you’re already at risk for clots I’d be very leery about taking tamoxifen. Even on a blood thinner. You’ve mentioned afib but not if you’ve had a clot that you took blood thinners for in the past. If you’ve had an actual clot in the past, you’re not supposed to take tamoxifen as it’s a sign that your blood may already trend toward being a little sticky. I think I’d have to weigh risk of bone loss over the next year vs my age, my overall health/life expectancy, and risk of deadly clot on tamoxifen given the afib or risk of recurrence/mets if you take nothing. If I chose to take tamoxifen anyway, I’d drive definitely add one of the newer anti-clot meds (Xarelto or Eliquis) as far less chance of developing uncontrollable bleeds/bruising. Hope this helps
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Hi Cheryl,
Hope those GYNO test go easy on you! It would be so nice if someone could find a more gentle way to get this tests done. Maybe instead of sticking wands up they could just wave it over everything and have it be done with. I'll be sending you good thoughts for getting through the test itself and for good results. Sorry you had to come back on the Tamoxifen Train hope you have some more smoother rides then bumpy ones.
That is wonderful that your boys are in the same class this year then they can help each other with the homework. I think schools now a days are over doing it with the homework free time does not seem to exist anymore.
Well lately, I've been feeling extra emotional and I have a cold to top it off too. I thank my "children" for the cold they were all sick last week at preschool. I've been feeling so many different feeling these past few weeks and having long crying break downs to let everything out. I can't tell if it is from the Tamoxifen or the fact that I didn't deal with my feeling regarding BC last year, so now it is all coming out. I've had lost of angry tears cause I'm so upset that i have to deal with all the breast crap! Thanks for listening!
Okay so the good news is Tamoxifen wasn't horrible today. When I saw my primary doctor today she said she would send me for a pelvic ultrasound to check up on my pelvic pain which I think are caused by cysts. In the meantime, I have a general pelvic exam this coming week. Glad things will be checked out and I wont feel so paranoid.
How are you doing?
Hope everyone is doing well and if not boy this sure is the place to come and vent!
Hugs and Love to all,
Sara
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Oh Sara I hope you are feeling better soon, darn kids always wanting to share. lol Keep an eye on the crying break downs, it is a side effect of Tamoxifen to cause depression - the drug just keeps on giving! If you find yourself getting worse call the doctor and come vent to us, pm me if need be I am just a click away and always have an "ear" for you. Hopefully if there are cysts they can get rid of them and the pain they with them!
The twins are working on a model and google slide presentation of some part of the body. DS1 is doing the Digestive System and DS2 is doing the Circulatory. Last week we built the models, today they need to finish up the Google slide part for presentations this week.
As for the Big T - my feet are doing there wonderful cramping, but hey no hot flashes so there is a bright side I guess. I had blood work done the other day and the numbers are dropping, pointing to anemia. Now to find out why I am anemic, starting with a nasty fecal test! Mailing poop through the mail - something wrong with that! The things we have to do to make sure we are ok. I am finding I am so tired lately, not sure if it's the Tamoxifen (going back on it) or the anemia. I have zero energy to do anything, I dream of the day when my energy returns and I don't have to go to bed before my kids or take naps in the afternoon! lol
Keep us posted on how things are going Sara.
xxx
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Dear Cheryl,
Thank you so much for your support and extra Love I appreciate it so much. Just reading your message made me feel better. I hope my cold bug leaves me alone soon. It isn't to bad just annoying I wish children would keep there germs to themselves they don't have to share everything. LOL
If you need a listening ear I am here for you too. It sounds like you are going through a rough time. Anemic that is something to be concerned about I hope your doctors are able to help you figure out what is going on soon and can make thing better. I agree there is something very wrong with sending poop in the mail. I feel for the mail carriers who have to deliver it.
Hope you get your energy back soon it really sucks feeling tired all the time. I hear you about all these test it is great that we get to have them, but at the same time it would be even nicer not to have to take them at all. Our bodies should just work right and have no problems at all dam it!
Glad you boys are able to help each other on there school project hope it turns out well.
Wishing you well, please let me know how things go and what results you get back.
Sending you lots of Love and Hugs,
Sara
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