Bottle 'o Tamoxifen

Momwriter, my onc has offered to switch me to an AI and so far I have declined because at least I know the side effects I deal with and don't want different ones. I don't consider bone density loss a side effect, I consider that a medical problem and at least tamoxifen, despite its many miseries, protects against bone density loss. But I thought I was on tamox for 5 years and now the oncologist is making it sound like he's thinking about 10 years......

Which brings me to Princess Buttercup (best name ever! As you wish!). I have decided not to have a hysterectomy, which is a complete turnaround from early April when I was screaming RIP IT OUT, RIP IT ALL OUT!!!!  But it turns out there is nothing wrong with my uterus. Not one, single thing. The gynecologist said there was no medical reason to recommend a hysterectomy. Unlike you, I was not having pain or back ache or on and off bleeding. I had none of that. Just that one time when the flood gates opened and basically a hemorrhage with blood clots occurred. It was like someone opened up the faucet and 16 or so hours later, abruptly shut it off. The bleeding did not drizzle off slowly over a day or two. It stopped. Abruptly and completely. Weirdest damn thing. So the pathology said there was no sign of hyperplasia or anything. I waited for the results of the pap (which took way longer to get back) thinking if there was some weird stuff going on with my cervix cells, then I'd have the whole works taken out. Nope. Cervix normal as ever. 

I talked it over with my regular doc who said I should have a hysterectomy when I need one. When I have a solid reason to have one. If the mental worry is more than I want to deal with, the threat that tamoxifen could give me uterine cancer, then he would say go ahead and take it out. But if the worry is not going to overwhelm me he said I should save that surgery for another day. If I get rid of the unterus and have other problems, I'll be mad. If I keep it and get cancer, I'll be mad. But if onc says he wants to keep me on tamox for another 5 years I might have to reconsider this.

Veeder, no. Onc said nothing specific. It was very odd. When I was talking to him and said I only had a year and a bit to go before I was done, his response was "yeah, well, maybe, we'll see, we can discuss that at a later date..."  It was the first I had heard any mention that I was heading for more years of hormonals. My Oncotype recurrence risk was based on 5 years of tamoxifen, I believe. My score was 11. I do not believe my tumour is being retested. If it is, no one has said anything to me about it.

Runor, I hear you on not wanting unnecessary surgery. For me the hysterectomy solved a lot of problems, not the least of which were frequent UTIs. So many issues, and my pathology report felt like validation that none of this was all in my head.

I think the important thing is to have doctors who listen and take our concerns seriously.

Also, it seems like many women have been hearing a new plan for tamoxifen and AIs recently. My plan just went from 5 yrs to 10, based on some recent research (according to my MO). Working on adjusting my attitude towards this…

HI Everyone,

I restarted Tamoxifen 3 weeks ago. I was on it 2 years ago for 5 months before being switched to an AI as my ovaries were removed. I had a recurrence and now on a chemo break as all is stable. We've restarted tamoxifen and I'm super tired. I have less energy than when I was on Chemo ( surprisingly). Just wondering if anyone has had the same experience. I get a little nervous because I was super tired right before re-diagnosis which I assumed was met related. I only had a scan 3 weeks ago which was really good so I'm trying to tell myself it's the tamoxifen lol. I'm sleeping decently but I'm just zonked.

Runor,

I will bring up the part-time/lower dose idea with my MO. I'm thinking even, one year on, one year off, or lower doses. I'm just starting this break after 8 years on Tamoxifen and I feel my body really needs it. I'm so excited although it's only been 5 doses that I've missed so far.

And I agree, hard to know what's the side effect of the drug and other things. That's why I'm anxious for this break. But I don't want to be unprotected. Bad thing about my dx is that there is no definitive literature on effect/duration of tamoxifen or any hormonal therapy on Her2+ . I'm definitely in the higher risk category, with multiple micromets in my lymph nodes (3) and LVI and nasty stuff in my tumor. If I'd have had just 2 micromets I'd be considered lower risk. Very gray area.

Thanks Runor ,

As far as I remembered last time, I tolerated it well. It was only 5months, but my hot flashes were low and the only big side effect I had was insomnia. Now I sleep, but I don't feel all that rested. While on chemo, like I said, I was blahhh for the first 2 days, and then mainly fine energy wise. So this is kinda crummy. It's very triggering since I was feeling this way prior to recurrence so it always makes me a little more anxious . ugh

I think I'm enjoying the fantasy that I can go off Tamoxifen because it's been 8 years. But the truth is, for Her2 positive (triple positive), there's no evidence that says 8 years is enough for my pathology. Of course, nothing says 8 years isn't enough time on tamoxifen either, but do I risk it? If I find out the side-effects are tamoxifen related, that information can help me manage them more effectively when I go back on.

It's good hearing how you all are managing tamoxifen in your ways. I will definitely discuss tamoxifen dosage - and maybe see what bloods tests etc she can order to see how my systems are doing. When I was in treatment I was on a study and I got detailed blood tests at every infusion and it was always so informative and interesting and helped me understand the drugs.

BAP I definitely think transitioning onto tamoxifen can make you tired. Let yourself rest! And I get the PTSD. I get PTSD this time of year because it was when I first felt the lump. But I didn't have the appointment until August- because I was going on a big family trip at the end of June/July that I didn't want to miss and didn't want everyone to worry. If I hadn't taken it, and gone in sooner, - cause God knows the whole process took a long time- would I have avoided micromets? Who knows. OF course, I didn't think I had it because it wasn't in my family and I was 47 and not the kind to get breast cancer. Turns out I was wrong.

BAP- Yeah, in my daily life, I generally don't wallow in that PTSD area, or in what could have been, or even in my tamoxifen woes-- I approach my side effects more like a ninja warrior- solving one at a time and they really are generally minor and manageable. But it is so nice to have a place on line to acknowledge those feelings and to pose questions and to share fears when going through a scary scan etc. Thanks for sharing.

I have been on tamoxifen for almost 3 years and have a few side effects but the one that drives me crazy is my dry eyes! Does anyone else have this side effect and if so, what do you take for it?

Thank you so much for any help!

Take care

Dana

By dry eyes, do you mean that when you're outside, no matter what the weather is, they just run and run and run? I have that. Which doesn't sound very dry. Quite the opposite. But my eyes water and water and I can't see what I'm doing because my vision is obscured by tears. Is that dry eye? Or maybe leaky eye? If it's dry eye, oh yeah, got it bad!

I just picked up two things from onco/pharma. One bottle of Tamoxifen and one bottle of letrozole. I'm so fatigued and out of sorts right now I'm not going to trial either one until I can lower my blood pressure and the swelling in my legs which is freakishly swollen. I feel like I can't catch a break. Anyone have any thoughts?

The fatigue I'm feeling is the same fatigue I felt before my lumpectomy. I hope this is just something unrelated to cancer but this is a weird feeling fatigue and I'm concerned that it might mean there is cancer somewhere else in my body.

PamEP, Like you, I was very hesitant to start tamoxifen and my MO fully supported my suggestion of a lower dose. I’ve been on 5 mg daily, every morning for about three and a half weeks now. Can’t be certain because they are so mild, but the only SE so far are possibly some night sweats (though I’ve always been a warm sleeper) and brain fog (buthard to say it’s from the tamoxifen given this new reality I’m dealing with). Trying to work up the courage to increase to 10 mg daily, which I’ll split into two doses. Have you asked your MO about splitting your dose?

Thanks for the links, PamEP. I hadn’t seen the second one. Unfortunately it seems all the studies on lower doses relate to noninvasive BC.

My MO is actually completely supportive of me taking only 5mg a day. I am the one who is considering bumping up to 10mg if I can bear the side effects. I think having a supportive MO who actually listens makes a huge difference. Of course as a medical professional he recommended that I take the full 20mg, but given the fact that I was leaning towards foregoing tamoxifen all together, he has no objection to my doing 5mg daily. I’ll probably try 10mg daily after my exchange surgery in November. Hope your side effects continue to be mild and improve!

Just my two cents as far as SEs when starting Tamoxifen.....brain fog is also a VERY common side effect of surgery. My dad is a surgeon and he warned me that the brain fog from anesthesia can often last as much as a year. He's seen people struggle with for even longer, albeit rarely. So don't be too quick to blame it on the Tamoxifen. Also, I found Tamoxifen to be very dehydrating. It was only after I started drinking lots (and I do mean lots!) of water, which I learned about on these boards, that I realized just how bad it was for me. All the nausea and dizziness went away after I upped my water intake. Both of those SEs are also SEs of dehydration.

And one last thing...I dealt with terrible burping for a few years after being diagnosed. In retrospect, I realized that it was about the same time I went to see a holistic doctor about various SEs from Tamoxifen. He recommended turmeric (which I honestly can't say enough good things about as far as helping with my joint pain from Tamoxifen) but he also recommended a couple of other supplements which I happily took. It took years before it occurred to me to see if the supplements might be causing the burping and through experimentation I found that stopping my ginger and fish oil did the trick! Who would have thought? I know fish oil can cause "fishy" burps but it doesn't tend to just cause excessive burping. And ginger is known to settle your stomach so the 2 I thought least likely to be the culprit actually were. And when I casually mentioned this story to my doctor at my next well visit, he said that he wished I had told him about my issue with burping because he would have told me that fish oil and ginger are known "muscle relaxers" and they have a tendency to relax that part of your stomach ( I think it's the epiglottis) that helps keep air down! So moral to that story is if you're having issues, talk to your doctor and ask questions here. You never know!

lala1: Yes, dehydration might be the reason behind the headaches and brain fog. These two side effects come up about a half and hour after taking the pill. Yesterday I drank a number of cups of tea (maybe ginger and lemon, or turmeric and ginger) and side effects were minimal. Thanks for the tip!

So far I am finding tamoxifen very tolerable. I am hoping that it does not cause any musculoskeletal issues, which I understand are more prevalent with the AI's. We all react differently to these hormone drugs and have to try them out to see if we can adhere to the program.