Bottle 'o Tamoxifen

rljes

Hey everyone, thanks for the replies.

Flashlight - my MO ran out of ideas for hot flashes so sent me to OBGYN. out of desperation she suggested Belladonna. The oxybutynin was prescribed for the hot flashes, I can't take any antidepressants, its like taking a bottle of Nyquil. (Lexapro, Paxil, Effexor) I was the one that came up with SGB injection - I saw it on 60 Minutes. I too was on Estrace Pills after my hysterectomy in 1994, and believe it contributed to my cancer.

This week will be 90 degrees - then Friday cool front hits. I had promised myself when it got below 50 at night I would start Tamoxifen 5mg regardless of my hot flashes. So FRIDAY it is.

I will try the Ginger. Anybody know how much to take for the Hot Flashes? Thx!

runor

Edj, back when I started taking tamox I remember it felt like my legs had turned to wood. I had always been rather flexible and all off a sudden I was gimping around as if I had no joints and was made of stone. It was awful. I wasn't running, but any outside yard work was miserable. I am positive it was tamoxifen related, but after a while that went away and was replaced by a host of new and equally annoying issues.

I find odd side effects seem to pop up and then as mysteriously, fade away. It's kind of cyclical. I also get hot flashes, worst at night. Covers off, covers on, covers off, covers on, covers off, swear and whack the pillow, try to sleep, now I'm cold, covers on, FLASH, covers off, kick my husband because I am positive it is him who is raising the temp under the covers. I consider asking him to go sleep on the couch since he is obviously the problem. Wake up too early, tired and look at my beloved cup of coffee as if it might be the culprit. No. It's that tamox. And my hot husband. Wait. That came out wrong. Not hot in that way, not in a Magnum PI kind of way... now I'm sad.

Where was I going with this? ..oh yeah, side effects. My latest one is peeing. I do it constantly. Once two tablespoons of pee have accumulated in my bladder, my bladder does not send me the signal that it's full, it sends me a signal that it's full and going to empty right this second whether that is convenient or not. All of a sudden peeing is an emergency! I used to go 10 hours without having to stop to pee. Now the SECOND I get the heads up that I have to pee, I AM peeing. Imagine my surprise. I am certain that is tamox working its magic on my girl bits. And on that topic the last time I had sex with my husband (just in case you thought I might be getting it on with Magnum PI) I bled! There are bits and pieces that tear now instead of whatever else they used to do. Joy.

Edj, I think you will find that one issue will rise to the top, annoy you for a while, then in a few weeks to months it will resolve and something else will come along. It's like you've joined the Side Effect of The Month Club, and you never know what goody will arrive at your door the first of each month. But the flashes, those have not faded away. Blah.

sm627

Hi

I want to give big hugs to you all. This summer side effects were very yucky for me really bad cramping and pelvic pain. I went to see my MO today and I though I was in a dream when she told me that I could take 5mg of Tamoxifen instead of 20. I asked her if I could just take 10mg, but when she said 5 I had to ask her again to make sure I was hearing her right.

I hope 5mg is the magic number and make Tamoxifen easier to live with. Is anyone else out there taking 5mg how is it going for you?

Wishing everyone well sending you all lots of hugs and Love!

Sara

edj3

runor -- yay? Boy that's not the Club of the Month I wanted to join! I'm dreading this morning's run, it's hot again (seriously, it's Oct. 1 and it's 75 out there at nearly 4 AM) and I'm so weirdly achy.

sm627, that's what I've started on. My MO agreed I could do the super slow ramp I wanted to do; I've been on this a week and a day. Sigh.

Rah2464

Runor thanks once again for starting my day with a huge laugh. Yeah the side effect of the month club

sm627 very happy that your MO was willing to try a lower dose for you yay! I hope somewhere there is data being collected on how folks do on the lower doses so those that come after us won't have the one size fits all dosing,

TrmTab

I take 10 MWF and 5 the other days...that gives me 50mg across the seven days of the week...I wanted 5, my MO wanted 10, this is the compromise. SEs are minimal compared to the bad SEs I had on Arimidex...

Runor I do use coconut oil vs bleed...my GYN suggested it. Trader Joe's has little plastic packets of coconut oil that are easy to store bedside...TT

Andraxo

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

BlueGirlRedState

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.

Xxxxxxxxxxxxxxx

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

flashlight

Sara, wonderful news!!!

runor

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.

TrmTab

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.

runor

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!

Mymomsgirl

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.

edj3

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?

runor

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!

WorryThePooh

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.

BlueGirlRedState

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

ndgrrl

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?

runor

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.

Krissie2430

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.

DorothyB

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.

edj3

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.

Lezza13

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

kcrd4766

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.

DeeBB

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.

lynae23

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?

DorothyB

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 / day

Pi-Xi

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. 😢

WorryThePooh

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.