Bottle o Tamoxifen
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sm627 - after a 3 month break after 2.5 years on 20mg (with the last 6 months of that being awful), I am on 5mg since April 1st. MO prescribed 10mg but I decided on 5mg because it's my life and my choice. I had been doing very well on 5mg - felt like ME again, excellent sports performance all summer. Yay!
In August I though maybe I should try take a little more, so I added 2 days/week at 10mg and did that for 4 weeks. Mistake. All my old symptoms came back by the 4th week. I've been back to just the 5mg daily for the past month but the symptoms aren't going back down and even seem to be getting worse. Knee joint pain, muscles that don't perform or recover well from big exercise, hard to get up from a squatting position, general crankiness and word finding problems. I thinking about taking a break again to clear my system, and then start back at 5mg. Maybe around 5-6 months the 5mg would have caused the same problems without the 10mg 2 day/wk boost. I need to find that out. With upcoming surgery (to likely take down my reconstruction and be flat) I may get a break from T anyway. I thought I read that others were told to stop taking it for a couple weeks around surgery. I'll find out next week when I see both surgeon and MO. Great if you can take 5mg! You might notice a bigger change if you take a few week break from it first and then re-start. It has such a long half life that it may take a very long time to see a difference just dropping from 20mg to 5mg, but everyone is different. Hope it goes well and you feel better on lower dose!!
- xo
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Runor - constant peeing. I am finally am seeing a pelvic floor therapist and am hoping that will help with the urgency/gotta go right now/leaks etc. I started experiencing some of this before Tamoxifen, with menopause, but not nearly to the degree I do now. I told her that one of these days I was going to get arrested for squatting behind a bush in a park. After showing me a plastic model of the female insides, she gave me a series of easy exercises to do to help strengthen muscles, that only take a couple of minutes/2x a day. I have seen her once so far and will see her again this week. I think on that visit I will insert a camera to watch what those muscles are doing/check to see if I am doing them correctly. Oddly, drinking lots of water during the day seems to help. I usually get about 6 8oz glasses, plus 2 mugs of coffee, and now that it is getting colder, sometimes tea in evening. I sometimes wonder if fresh coffee vs instant is a problem. When camping I take an instant expresso, and the urgency does not seem as bad. Then again, when camping it is usually remote or lots of bushes, so squatting when needed isn't too much if an issue.
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I have also joined the 5 mg club. My MO doesn't know, she just wouldn't approve. I must say that I have hot flashes at night, but they are not so bad, and I'm almost glad to have them because I guess that's proof that 5 mg is working.
I had started with 20 mg, I took them 3 days... From the first pill I felt my ankles stiff and sore, and my belly was that of a 7 month pregnant. I think that if I continue with the standard dose my endometrium would thicken in a few months, and I don't want to change to an AI, so I made my decision
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Sara, wonderful news!!!
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My gut feels bloated too, some of that could be typical middle age weight gain, where the middle part of me is really aging! But right from the start of tamoxifen my bowels really got slow. Initially the constipation was really bad, but my gut is still sluggish. From a lifetime of no poop problems to this? I recognize now that my bloated feeling is a sluggish bowel symptom. If I eat a diet that gets things moving (hello stewed prunes!) then that gross heavy gut feeling goes away.
Edited to add: BlueGirlRed, did I understand that you were going to put a camera up your hoohoo and film what's going on up there? Oh my god! I can imagine that if I ever did that, once the camera had pushed its way past the cobwebs and dust bunnies, I'd find all the socks that have gone missing over the years. And they think dryers send them to another dimension. Wrong! They end up in your vagina, collecting dust and being viewed on camera. Cool.
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Runor - that is truly LOL funny!
I have gained a solid 5 lbs in my belly since starting the big T. I do eat dried plums (prunes) for bone building and digestive qualities...they are more like large raisins then the stewed prunes...uck.
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TrmTab, I have a bad track record with stewed prunes, which I rarely eat. But when I do I know I should only eat a few. Just these 5 prunes. 6. Well, what's 4 more, let's make it an even 10. What harm can come from 10 stewed prunes? But there's only a few left to put in the fridge. Seems kind of pointless to put so few stewed prunes in the fridge, they'll just go bad. May as well eat them. So in this way I have been known to consume VAST quantities of stewed prunes and I feel absolutely fine, for a few hours. Then an environmental catastrophe of epic proportions takes place and I REGRET with weepy tearfulness that I ate all those damn prunes as all hell breaks loose! I swear every time that I will NEVER do that again. Yeah, right. I just let enough time go in between that I forget the serious nature of the intestinal backlash that unleashes itself upon me when I eat a pound of stewed prunes. But I do love them!
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Runor I get the belly thing, no bowel issues yet but just that uncomfortable feeling. I had a appointment with my Ob/gyn and she said most people don't tell you that your GI tract needs some estrogen too, so when you take tamoxifen it can really mess with that too.
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Oh runor I did that with dates. We'd been given some exquisite Turkish dates for Christmas one year, a fairly large box. They were sweet and rich and normally I'd eat one. That day I had five. That night was beyond miserable and for HOURS! How could such yumminess cause so much discomfort?
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Edj, I didn't know dates could get the old innards working!
Aside from prunes I once binged on dried apples. Oh they were so good and chewy and I ate a frightful amount. Let's just say that it was one of those movie moments when your gut goes 'gurgle' and you know, KNOW, there is no good outcome. I have never driven home so fast in my life, tears streaming down my face as I clenched with all my might to make it to the bathroom. Which I did, and where I stayed for the next 5 hours saying I will never eat a pound of dried apples again. To this day I fear a dried apple!
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Hi everyone, just found this topic so jumping in, as I recently started taking Tamoxifen 20mg on the 6th of September. Prior to that I was on Anastrazole for 5 months and 5 days.
Switched from Anastrazole to Tamoxifen because Anastrazole was giving me terrible joint aches and pains.
So far Tamoxifen is a lot easier on my joints. However the hot flushes and mood swings have not been pleasant, as well as a sort of flat feeling mentally. Also I am worried as it seems to have had an effect on my desire to be creative, something which is important to me. Apparently losing Oestrogen from the brain reduces our creative abilities! Has anyone else encountered this problem?
Mymomsgirl - that is interesting re the GI tract effects. I have had a vaguely upset stomach over the last few weeks, and never guessed it could be the Tamoxifen causing it!
Arwa89 - it's natural for you to worry about that at your age especially, but reading lists of symptoms could make you more worried than is necessary. I've only been on it one month but haven't noticed any issue in that regard.0 -
Runor - not a camera, but some kind of sensor that could detect how strong my muscle contractions were. Could watch a wave on the screen. Very cool. I do show some strength, but need more, and I tend not to completely relax (at least between reps when doing the exercises). Not relaxing makes the exercises a little less effective, and may contribute to frequency/urgeny
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Has anyone had the Breast Cancer Index Genomic test ran?
My Oncologist had me get the test and it came back a 2.5% chance of late reoccurrence and it said Tamoxifen is of little benefit.
I am 100% ER & PR +. braca 1 and 2 negative with a strong family history of cancer including BC. (4 of us diagnosed with BC in 9 months time) I was 44 at diagnosis. Stage one Grade 2 IDC of 1.4 c. I had Onchotype Dx of 18, no chemo(though my new Oncologist says I should have had it) I had internal Brachytherapy Radiation. I had I am 6 yrs out now.
I've had a hysterectomy, tried Armidex and Letrazol and the side effects were not good, so placed back on Tamoxifen.
My Oncologist says its up to me if I want to continue until year 10 on Tamoxifen.
He says that the Breast Cancer Index test is quite new so he is unsure of how many Oncologists are relying on it.
I am so conflicted so wondering if anyone else with stats similar to mine has tried that test?
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ND, how do you feel about this? Do you feel it is pointless to take more tamoxifen? Do you feel it puts you at high risk for other side effects, most of them quite unpleasant? Do you feel secure going without?
I was VERY reluctant to start tamoxifen. It was a huge inner battle. In the end I didn't want to die. I see it this way. There are 4 bullets that we have to shoot this damn cancer. Surgery, radiation, chemo and hormonals. My Oncoscore 11 said there was no benefit to me to take chemo. Hooray, no chemo. Boo, one less bullet to shoot the cancer with. I mean, if you want to kill something you shoot it full of as many holes as you have bullets. I was down to three bullets. That left surgery, radiation and hormonals. So while I was not happy to take tamoxifen, to NOT take it would have removed yet another bullet from my arsenal.
You have done 5 years of the drug and if the benefit to you is low and you have had enough, then you have had enough.
Me? I have completed just over 2 years and I wonder how I will feel when the 5 years are up. Will I feel like Linus with his security blanket yanked away?
I think you need to question your doc more about why he feels you should have had chemo with an Onco score of 18. Some docs at 18 say chemo, others seem to say no chemo. I'd want to get a really clear understanding of my pathology report and what prompts your doc to make that comment. There might be information there that could help guide you about future choices. Good luck with this.
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I’m laying on the couch right now because my knees are killing me! I started off googling to see if I could find relief but ended up here. If I can’t find relief, I know at least y’all will understand. I had a double mastectomy 8/13 and have been on the tamoxifen for a little over a month. I’m used to getting up in the mornings and not stopping until bedtime and I’m hoping my lack of energy is from the MX and will come back at some point. The knee pain tho! If I don’t figure out a way to ease it soon, it won’t matter if I get my energy back because it hurts too bad to get up.0
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My medical oncologist (MO) wanted me to take 20 mg of tamoxifen daily for 10 years. He wanted me to start w/ 20 mg and then deal w/ any side effects. After lots of reading as well as talking with a few people, I opted to ramp up to the 20 mg slowly.
I have gotten up to 12.5 mg / day and was ready to move up. Since I opted out of chemo, I felt like it was really important to do the hormone therapy.
However, in the meantime, it has become harder and harder for me to do anything. It kept getting worse. I can spend 10+ hours in bed and still be exhausted. (some of that is sleep apnea - working on getting that diagnosed now) Then I get very little done during the day. I can barely keep me and my animals fed and my bills paid (without doing healthy eating or keeping budget updated or house clean).
After re-looking at the research and various projections and discussion w/ a friend, I decided to go back down to a flat 10 mg / day.
Fri was a 15 mg night, but took just 10 mg since that is what I am doing now.Sat I realized that it would take me until Dec 1st to get down to 70 mg in my system if I just starting taking 10 mg / night. So last night I didn't take any tamoxifen at all. Then, since the effexor is to help w/ side effects of tamoxifen, I decided to just not take that either. (will see if that was a mistake as time goes on)
When I woke up this morning, my mind was clearer than it has been in a long, long time. It is like I felt like I could do things. I am still a little tired, but my mind is totally different! My blood level now that I skipped a pill is almost 72. It will be 70 if I stay at 10 mg / night. The last time it was below that was Aug 12 when I was in Panama. The metabolite level is over 10% of where it will be eventually, but is the lowest it has been since the beg of Sept. I'm hoping if I keep doing just 10 mg, I will keep feeling like this. I knew I was getting less & less effective at doing anything other than feeding animals & me, but didn't realize how much it affected me because when it was lower in Aug & before, I was still recovering from radiation and coming to grips w/ having cancer, etc.
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I've stopped taking tamoxifen, at least for now. I've posted elsewhere that on about the 10th day of taking tamoxifen, I noticed my heart rate spiking a lot during my runs. As I see it, there are probably three possible causes to this (which has only gotten worse):
- Radiation--in which case I'm screwed.
- Prolia--had the first shot September 23, so it won't wear off for another five months
- Tamoxifen--which I can and am stopping.
So that's where I am now.
My run this morning was a disaster, I spiked to 187 within 1 1/2 miles (believe me, that's not normal--my normal heart rate on my runs is about 154). That's dangerous. So tomorrow I'll drop a note through the portal and let my MO know what's going on. I'm sure my concerns will be dismissed, but maybe not. In the meantime, this drug should be out of my system in a couple of weeks so that will be a good way to check also.
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Krissie2430 Sorry to hear about your knee pain.. I take Move Free Ultra as a supplement for my knee pain. It seems to do the trick and I have been taking it for years. It would not hurt to try. I did not think glucosomine worked at all. I put tumeric on my food as well. Also take it easy since you are only 2 months out. This is my 7th year on Tamoxifen 20 mg. Perhaps you could split your pill like so many women on this thread have done, 10 am and 10 pm. Besides my knees, the only other pain I feel is in my wrists at night. Oh, and those stupid hot flashes. Hang in there and take care
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Yes, sorry to hear about your knee pain. One thing to note is that turmeric taken orally in a hydro-soluble form absorbs better than forms applied topically or on top of food.
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Good afternoon!
Has anyone stopped taking Tamoxifen for several months and still experience fatigue? Not so much being tired all the time but a weak feeling.
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Hi ladies,
First let me say HAPPY HALLOWEEN
Well I was tired of being tired and fat so I stopped taking my tamox for a month and honestly I did not notice any difference & it did make me nervous not taking it....soooo I just started back a few days ago. I am just tired of being tired all the time which then keeps me from wanting to workout before or after work. I have also put on about 15lbs in the last 2 years from all this and I am just like BLAH lol. My doc wants me to stay on it for TEN years...ugghh...then I will be 51. It's so hard to know if it's worth it or if you will be okay without it...I really struggle with thinking that sometimes myself. I had a full hysterectomy after my double mastectomy so I think my body is just all out of whack and my stomach has gone from being mainly flat to nice and hard and round 
I heard commercials about taking Estroven which is supposed to help with the menopause symptoms (and I assume may help with the tamox) so I am getting some today and will try it out. Have any of you taken any menopause relief pills that worked or helped ease some of the symptoms? 0 -
I was only up to 12.5 mg / day and skipped one day. I could tell a HUGE difference in fatigue and mental clarity.
I'm still doing 10 mg / day0 -
I went off tamoxifen two weeks ago for surgery and within 48 hours of the last pill the difference in mental clarity and energy was astonishing! I will be starting up again in a few days, but it is going to be tough. I’m still me under all that craziness. 😢
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Pi-Xi, yes we're all still 'us' in there somewhere. I find that comforting to reflect on when I'm feeling a bit Tamoxifen crazy.
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Still on pause while my heart rate issue gets sorted out. My PCP has ordered a stress echocardoigram. And I noticed that my blood pressure has gone nuts--historically I have low blood pressure but in the last week, it's been in the 140s (I'm usually 110) for the top number. Now I wonder if the Prolia is affecting me there, an increase in blood pressure is a common side effect.
This just sucks.
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lynae23: My MO advised taking a pills that are called 'AM PM for menopause. They did seem to help, I had to get them on Amazon or Walgreens did say they could order it
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I've been on Tamoxifen only one month, but I find it makes me need to pee more often and more urgently! Very annoying in the middle of the night, plus on road trips. Going on one tomorrow and feeling a bit anxious about this issue.
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WorryThe Pooh, ugh, the pee thing. Lately by the time I realize I have to pee, I AM peeing! My bladder just gets on with the business at hand no matter where I am. Pisses me off. Ha ha, bad pun.
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Hi everyone - this is my first post.
I am 43 and just told I have an almost 1/2 chance of lifetime cancer (technically 43%) due to a robust family history, many pre-menapausal (two great grandmothers, two grandmothers, two aunts). My BRCA 1/2 tests were negative and my last genetic test showed nothing else causative (although a new test is pending).
I'm a widow and recently remarried to a wonderful widower. As you might imagine, I want to be around as long as possible for him and or my son and step-kids. I also have two friends (my age diagnosed with stage 4 cancers this year).
I saw my first BS this week and she is wants me to consider tamoxifen - as does my mother who was in the trials in the 90s. I have been living with this specter since I was about 15 and realized the cancer in my family was more than most and that meant I had a good chance of developing it too....I know this is going to be challenging, but I feel like I have finally been given the green light to be really proactive and I need to do that for my own mental health.
So....
- What are the top questions I need to ask my medical oncologist before walking in next week?
- What are the top things I need to think about before diving in?
Thank you all for your wisdom...DLRF
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dlrf- wow! Those are some scary numbers! You say cancer but did not specify if those were all breast cancer or other cancers too. Cancer also runs strong in my family, and I always assumed I’d get it, just never expected it to be breast cancer, and not at 39!
Anyway, assuming those are breast cancer, it makes sense to at least try the Tamoxifen. You can always stop if you develop bad Side effects. There are a few serious side effects like blood clots and endometrial cancer to be aware of.
If it was me, my logic tree would be something like-
If I don’t take it and then get cancer- how will I feel? If I do take it and then get cancer- how will I feel? If I try it and then have to stop- will that make me feel better? Etc...
Keep in mind Tamoxifen is not a guarantee, just an insurance. I wish you the best and may those odds fall in your favor!
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