Bottle o Tamoxifen
Comments
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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.
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B-A-P fatigue is a known side effect. I have had them all. But it seems they come and go in waves. So, what bothers me for a few weeks will eventually ease off to be replaced by some new annoyance until that eases off and something else becomes more annoyingly noticeable. BUt the other thing...when I went through my recent cancer scare in April, I was exhausted. EXHAUSTED! I usually never go to bed before midnight, and if I do climb into bed at midnight Hub asks me what's wrong. But when I was stressed and freaked out and terrified I was utterly worn out by end of day. I would go to bed at 9 and crash like I'd been working hard field labour all day. So I think sometimes mental exhaustion shows up in our bodies. Maybe you held it together to get through what you needed and now that you're in a stable place, now that you can let your guard down a little bit, your body is saying IT'S TIME TO BE TIRED! So...rest. If it's that, then you will be able to sleep it off in a few days and feel better for it. If it's tamoxifen, let's hope it eases off and something else, like hair loss, constipation, stiff joints and weight gain in the middle come along to annoy you. Hang in there!
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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.
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Momwriter, to be clear my onc never gave me his blessing to take the dosage that I do. In fact his last communication with my regular doc said maybe I should switch to an AI so that I would 'take the full recommended dose". Pffft, yeah right.
Even at 60% of the regular weekly dose, I have had all the side effects. Up to and including an epic event of bleeding after 4 years of no periods. While the pathology said this behaviour is in keeping with the 'known effects of tamoxifen'... there seems to be no actual changes in my uterus. So, this report is, as you have said, kind of a gray area. No one really knows why my uterus decided to turn itself inside out and bleed like mad. But now it seems fine. Go figure.
Do not expect your onc's blessing. If your onc is honest he/she will say that the best, lowest dose was NEVER studied, because it wasn't. We take 20mg because it was the dose most women could tolerate, NOT because it was an effective dose. Tamoxifen still has a very high non-compliance rate. It comes with a serious set of often miserable effects. Women quit taking it. You'd think they'd figure out how much people need to be protected. But no. No profit in that research so it will never be done.
I hope you feel better on your break. It took me a while to realize that I sure did! No more waking up at night to pee! No leg cramps! No groaning and creaking when I got up off the sofa. But beware.... it makes going back on all that much harder. I really, REALLY stared at that pill a long time, feeling cornered and mad at the decisions I was faced with, before I swallowed the damn thing.
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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
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My onc wanted me to take 10mg a day, or 70 a week...I started at 1/2 10g pills everyother day, built up to 1/2 a pill everyday, and then added somedays of a full 10mg pill. I stopped at a total of 50mg a week. A full pill M/W/F and 1/2 a pill the other days. I have had this routine for over two years now and it has worked for me and my onc is "okay" with it as all he wanted was 70 and he is getting 50.
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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.
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oh momwriter, sometimes the answers To those questions can never be answered. I ask myself similar questions , and can often shift blame to myself. “What if I pushed them harder for an answer ? What if I didn’t take no for an answer ? “ I was brushed off for two years before demanding a biopsy which led to my diagnosis you see below. I was 30. The ptsd and the frustration are all too real. I try to focus on what is and not what could have been “if only” but I fail at times.Everything I’m feeling is likely the tamoxifen and I appreciate the input for sure. My last scan was good but had some liver damage from the chemo which is stressful because I found out about it on my own bs my dr. So I have no answers and always worry that something is going on.
Hopefully this is an adjustment period that will taper off eventually.
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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.
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Update-
Met with my MO. I have completed 8 years of tam and am on a break for the summer.
She said I have the choice to go on nothing, start an AI,or go back on Tam. She looked back on my pathology which was pretty nasty though she is also optimistic. She recommended against prophylactic MX on my good side. But I'm not convinced.
So "we" decided I would start an AI, Aromasin (exemestane) in September, and if it isn't bad, I will take it for 2 years.I need to do more research and find if the "side effects" like bone density loss are reversible or preventable by something other than drugs with other bad side effects.
One interesting thing of note: She said Dr. Paul Goss (MGH, DF) has been doing some type of studies of alternative dosages of HT-- taking breaks, intermittent use, though I don't know if he's published on this.
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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
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Teach5, oh, I have DRY eyes! I heat them every night using an eye mask for ten minutes (should do it twice) and use Hylo Gel (drops) several times a day. I find it to be super expensive but it offers relief.
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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!
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Thank you for this wonderful thread ...my sister had breast cancer diagnosis couple of years ago ,she is her2 positive too ,from what i have learned her2 positive mostly reccur few yrs after diagnosis , so i believe you shouldn't worry about her2 positivity by now ....my sister is on tamoxifen i would like to benefit from your experience with the drug what time do you usually take it and is it with or without food ....bless u
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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.
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I started tamoxifen last week. I am easing into it trying to determine side effects and best way and time to take it. My MO agreed to let me take 10mg rather than 20mg, given my physical size, my cancer's specifics, and my reluctance due to the very serious side effects this drug can have albeit low percentage. (oh those BC percentages...) I chose tamoxifen over the AI's because of the AI's negative effects on bone density and brain and heart health.
Side effects showed up the third day as nausea, headache, and brain fog. So far I have found that taking the pill with food in the late afternoon or early evening is best for me. That reduced the nausea and lessens the drug's affect on my daily activities. Doctors say side effects decrease with time, and at this dose I am finding them bearable at this early point.
It seems to be treatment by trial and error by individual under an MO's guidance. If this drug doesn't work for me, I will try one or more of the AI's and go from there.
KateHanni: I think we all worry about cancer in the body since there is no cure. We just have to try our best and advocate for our care.
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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?
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DaughterOfB: If my MO had his way I would be splitting the standard 20 mg in two 10's per day. Actually, I have been splitting the pills for my trial and error. I find the 5 mg gives the brain fog, which is its most disconcerting daily SE. So rather than having two brain fogs each day, I am going to work up my will to try a 10 mg in the early evening and see how that goes. From your post it sounds like your MO wants you on 10mg per day. The point is to get to a certain level in the blood and keep a certain bias. Apparently the half life of the drug is 4 to 7 days after a steady state is reached. Above that level, there isn't any extra benefit but there is higher risk and general SE's.: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053098/ https://breast360.org/news/2020/07/31/could-i-try-a-lower-dose-tamoxifen/ What is truly frustrating is that there has never been a clinical study to determine the minimal effective dose for invasive breast cancer vs prevention.
There has been some precaution about splitting the tablets but it seems mostly to apply to caregivers. I swallow the split with a surrounding soft food but I wonder if it might be safer to take the 10 mg pill as is.
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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!
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Kaycee: Just to let you know that I took the 10mg yesterday with little side effect. Small brain fog and headache. I wonder if breaking the pill causes an increase in nausea. I will probably alternate between 5mg and 10mg for a while. Good luck to you!
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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!
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KateHanni-
I was tired for months after radiation. It was the hardest part of my treatment so far, even harder than chemo. A friend of mine who is a radiologist told me that they don't like to tell people how difficult it will be in advance, because they might not come back for treatment. Maybe your tiredness partly comes from having had radiation so recently?
I will also say that when I first started Letrozole, I felt great for several months. The side effects didn't kick in for a while. Letrozole is hard for me, but tamoxifen was worse. Then again, one of my friends sailed through 10 years of tamoxifen, no issues at all. I think every person is different, and you mostly hear about the problems here.0 -
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.
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Glad to hear, PamEP. I’m holding off on increasing mine until I’m on leave from work after my exchange surgery. Rather not have any severe brain for or other SEs affect my work.
lala1, yes on the dehydration! Thanks for mentioning that. I wake up parched in the middle of the night sometimes. I really need to up my water intake.
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Trying to get acclimated to tamoxifen, I think I increased the dosage too quickly (I am on no prescribed medications but this one) I took 10mg two days in a row after a bunch of days on 5mg and the SE's were awful.
Has anyone tried different dosing strategies when starting tamoxifen? And how about splitting the pills?
Wishing this were easier for all of us.
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I have been on tamoxifen for almost 3 years now. I am reading that others have brain fog and it is listed as a side effect. I am just wondering if anyone could explain what you would consider brain fog. I have felt like I have lost my critical thinking skills, can’t multitask at work as well as I used to, and simply forget things. This all started after rads and starting tamoxifen. I know I do not perform as well at work as I did before surgery and all that. I did not have chemo. I am so self conscious about this and also basically angry. I just had a particularly rough shift last night and just needed to vent about this and see if it is affecting anyone else
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Dani, that sounds very much like brain fog to me! Some days I feel as though my head is stuffed with cotton and thoughts or ideas simply cannot connect. Fortunately, I am retired so I can slow down and proceed carefully on those days, not a luxury you have at work. Sorry I don't have a solution to make it better. I do think sometimes increasing my water intake helps a bit.
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Hi there.
This is an enormous thread so pardon me if my inquiry has been asked previously.I’ll begin Tamoxifen in a matter of days and I’ve noticed some of the side effects commenters have expressed are similar to what I’ve experienced since chemotherapy rendered me menopausal or at least I have some mild menopausal like side effects.
My side effects are warm flashes when I’m trying to sleep I treat with Vitamin D and Sage Tea, dry vagina I treat with coconut oil, hip/groin/sacrum/buttock discomfort, not unlike a mild case of Greater Trochanteric Pain Syndrome and foot/arch discomfort very much like Plantar fasciitis. These issues arise in the mornings upon waking up and the evenings after working out. Fortunately my brother is a physical therapist and I’ve been able to manage my discomfort very well with specific exercises.My medical Oncologist believes my issues are very mild and I’ve faired well considering my treatments and that they’ll reduce even further as my body becomes accustomed to the hormonal changes I’ve endured. He was sketchy regarding Tamoxifen side effects as he believes everyone is different and couldn’t elaborate whether it would enhance my current issues or if I’d have any issues at all - not much help but I suspect he’s a little frightened of me because cold capping didn’t really work that well and I tore him a new arse hole, cold capping was brutal.
So I thought I’d ask here - will beginning Tamoxifen exacerbate my chemo induced issues further or have I reached the pinnacle of potential side effects and it’s smooth sailing from here on end with just the few issues I currently have. I would appreciate anyone’s personal experience, especially if they had chemotherapy prior to taking Tamoxifen.
I’m 49, 5 foot 2ish, 52kg’s, don’t drink, former social smoker, clean eater, decent and varied exercise regime.
Thanks in advance.0 -
I started tamoxifen 6 weeks ago and I haven’t any side effects at all. I am post menopausal and am on Tamoxifen for 2 years due to osteoporosis before being switched to AI.
When does most SE start?
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Hey valscac- i am 2 years on tamoxifin and no
side effects yet- us post menopausal
woman have fewer side effects according
to my Oncologist - while some have none at all.
You may or may not have any. On the flip side,
we are at higher risk for embolism and
uterine issues- however, the percentage is
still quite small and doesnt outweigh, in most
cases, the benefits of lowering risk of cancer
recurrence/mets. That being said, i find it interesting that you will seitch the AI after 2
years . i have osteopaenia and didnt want to
take AI - still dont….
(i still havent put my stats in at bottom
and plan on finally doung that soon
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