Bottle 'o Tamoxifen

runor

Cricketdog, tamox seems to hit everyone a little differently, with some symptoms coming on stronger, lasting longer, or fading quicker than other people. However...do not fool around waiting to talk to your MO about your eye! Tamoxifen can is rare circumstances be very toxic to your eyes! Go to an eye doc and tell them you are new to tamoxifen and tell them this red rash in your eyeball is new and have them investigate. Eyes heal very well if there is a problem, but they also go south really quick if you don't stay on top of it. So please do not wait. This comes from someone who has lugged her hub to an emergency room with various eye injuries and inflammations many, many times over the year. The man simply cannot keep a chunk of steel out of his eye if there's any way he can possibly stab it in there!  Have your eye looked at as soon as you can and not by your onc but by an eye expert!

Sugar77

Hello everyone, I’m new to this thread. I’m starting tamoxifen in the next week or so and just picked up my prescription yesterday. It’s for 20mg once a day. I’m sure this has been discussed umpteen times in this forum but I’m wondering what time of the day is best to take it. Morning, dinner time, or before bed?

Beaverntx

Sugar, time of day is what time works for you. My pharmacist advised taking with my evening meal and that has worked for me. She was particularly adamant about taking it with a meal. Probably the most important part is to take it at a time when you won't forget to do so. I use a pill case to help as a reminder for my prescriptions and supplements.

Lewhy

Hi Cricketdog and Sugar,

I have been on Tamoxifen since 2/14/2018. I started taking it in the morning and was nauseous so I switched to bedtime. I have hot flashes and joint/bone pain but they seem to come and go in intensity. I can now pretty much go back to sleep after the hot flash hits. I have two to three per night which is not bad.

Cricket, I understand what you mean when you say your brain feels disconnected. After starting Tamoxifen I was having fatigue, word finding and memory issues that were so bad I thought I might have had some sort of mets to my brain. I talked to my MO and she suggested an appointment with a neuropsychologist. I spent a day testing with her; math, drawing, problem solving, etc. and it was very helpful. I found out I was having some cognitive issues and I was started on Concerta which has helped me immensely. I was resistant to starting medication but it has helped with the fatigue and I feel like I am back to myself at work! I was also told that women who have had problems with pms are often affected by Tamoxifen more than women who have not had pms issues. I had a hysterectomy because of fibroids when I was in my 40's and could not believe how much better I felt every month! No more crankiness, sadness, food cravings, etc. I never did anything about the pms, thought it was just normal and lived with it.

I still have hot flashes and joint issues but nothing that I cannot handle, and who knows, the joint issues may be my age! Good luck!

scoop

I've been on tamoxifen for 4 months. Last week I started feeling like swallowing was difficult. Today that escalated into a full on panic attack. Doc says throat looks fine and its just anxiety. I know difficulty swallowing is listed as a side effect of tamoxifen. Has anyone else experienced it? I find it pretty distressing.

Veeder14

Hi Scoop,

Tamoxifen can irritate the stomach and it sure does it for me. I have GERD/Acid Reflux and one of the symptoms can be the feeling like it's difficult to swallow, like the pill or food is getting stuck even without anything physically blocking your throat. I think it's sort of like getting spasms but not sure. I've had it a couple of times but I take medication to protect my stomach/throat from the irritation of the Tamoxifen. I've got 3 1/2 more years to go. Ugh.

When you say your doctor told you that your throat look fine what type of exam was done to check on your throat? I've had several endoscopies where they actually look down your entire throat and it's not pleasant. Why does your doctor think it's anxiety? i would get a second opinion because you don't want to have throat/stomach damage which can easily be prevented with stomach medication. I always remain upright after taking the Tamoxifen because laying down can also irritate the throat/stomach. Let us know what you find out.

scoop

Hi Veeder, the doc gave just a quick look into my throat because I was saying I couldn't breathe, so he verified my throat was not actually closing up. I got some anti anxiety drugs which calmed my breathing and went home. My throat still feels funny, but I can't tell if it is because I am hyper focused on it or because it's real.

Are there any over the counter things I could safely try to see if this is stomach related? I see the MO in two weeks, but when I called her office as this escalated she didn't seem to acknowledge any link between tamoxifen and trouble swallowing.

Veeder14

Hi Scoop

You could try the antacid over the counter medications to see if that helps. Take it about an hour before you eat and follow the directions on the package. You can eat non spicy foods, like bland foods, small meals, don’t eat about 3 hours before sleep. You can also ask for a referral to a GI doctor to be evaluated. There are PPI meds that help heal stomach and throat irritation but are prescription. Take the tamoxifen with food if you aren’t already I hope you get this figured out soon.

flashlight

Hi scoop, I sometimes have difficulty swallowing and have increased heartburn from Tamoxifen. I also have hypothyroidism and a goiter that contributes to swallowing issues at times. What I have found is that when I don't drink enough water these issues increase. Take your Tamoxifen with at least 8oz or a bottle of water each time. If you are unsure it is heartburn take the 14 day Omeprazole treatment. That should rule it out. I now take Pepcid, but Zantac really worked better for me. My allergies seem to be worse this summer so I use the generic Zyrtec and the generic Flonase from Costco. Post nasal drip can cause swallowing issues as well. You need time to heal you have put your body and mind through a lot. Give yourself a break and try to relax. Best wishes.

Beaverntx

I take generic loratadine every day since starting Tamoxifen. I was advised to do so and think it helps. We have had so many allergens around here in a regular basis that it is hard to know...

Re allergies, Benadryl is a no no because it interferes with the action of Tamoxifen. Bad news for me as my PCP recommends the usual antihistamine in the morning and Benadryl at bedtime when allergies are really bad.

scoop

Thank you ladies for the info! I also had thyroid cancer and a thyroidectomy five years ago. That is unlikely to be the issue I think, as it wouldn't just pop up so fast if it did recur.

I'm hoping my MO will address this seriously, but she sort of seems to shrug off reported side effects so far. We are still early in our relationship though.

Salamandra

I got really bad heartburn from tamoxifen. My MO referred me to someone in the system who works with stomach stuff and they examined me and did an endoscopy and didn't find anything. I did get prescription Prilosec for a while, which is just like regular but I could get it cheaper. Even with the Prilosec, I had to be careful with what I ate, but it did get it to bearable. Eventually the heartburn mostly went away and I came off the Prilosec. Then I just kept some tums and chewed it before or after I eat something that I think is likely to aggravate my heartburn.

It could definitely be a combination of dryness, heartburn, and anxiety. I mean, I feel anxious when I get a new symptom - especially something related to something as visceral as breathing! And there's certainly enough going on around us to feed anybody's incipient anxiety levels.

I also did not have an easy time talking with my MO about my side effects. She would be quick to refer me for more tests but once those tests came back clear, she seemed to just want to foist me off on to the integrative medicine team for side effects support - which I am mostly a skeptic on. But I think that she does not consider herself an expert on side effects management or thinks she needs to be, which is both reasonable and kind of admirable (how many MDs are willing to acknowledge that they are not experts in everything, and she deals with a lot of cases more serious than me) and frustrating.

wulfgirl4

Hello again! In all of your experience, would you say that Tamoxifen causes inflammation? I feel like my legs and especially my ankles and feet are so swollen. I notice it more towards evening, but it's worse than it ever was "Pre-Tamoxifen." Just drink more water??? It's so uncomfortable.

Thank you for any advice you can share.

runor

Wulfgirl, my feet swell terribly and have for years before tamox so I don't think I can place all the blame there. However, one of the first joints I noticed affected were my ankles / feet. It literally felt like my legs had turned to wood and I lost mobility in the ankle and foot joints and walking became awkward and strange. I trudged. I could not flex in the ankle like before. I tripped and stumbled a lot. Then I noticed that the swelling that used to be just in my feet had moved up to cover my ankles. I think the annoyed and angry joints in my feet contribute to the overall swelling. Tamox might not be the original cause but it sure didn't make anything better and in fact made things a bit worse.

I take a water pill for my blood pressure and this is supposed to get rid of the swelling. It does not. Nothing does. I go to bed with swelled feet and I wake up with swelled feet. It feels pretty gross. Hot weather is the killer. The swelling is not as bad in the winter. So I have to say that tamox probably isn't the only reason you swell, but where joints are angry, swelling in that area makes sense. 

wulfgirl4

runor,

You've perfectly described how I feel. My ankles & feet feel like they've turned to wood (I notice this mostly throughout the night when I get up to use the bathroom and have to "trudge" as you say) and again in the AM when I get up for the day. I try to do stretches to wake up my joints before my feet hit the floor.

AMotherof2

Hello Ladies, I've been prescribed Tamxo, since December of 19. Spoke to my Onc she mentioned its upto me. She said take it for a little while then see how it goes. Like everyone else I am concerned about the side effects.I just had my reconstruction surgery yesterday. So I just wanted to know who had side effects and if it was tolerable, I know we all react differently. I'm glad to be part of an Amazing Group of Women.😁 And don't have to take this journey alone.

MsPrecious

For me, the side effects are not interfering with my day to day activities. When I saw that my hair was falling out when I comb or wash, I decided to be washing it once in 2 weeks, so I comb only when I wash. It's less than the length of my pinkie anyway. For hot flushes, I use a/c and ceiling fan combo. Ankle pain once in a while but still tolerable. Bone pain tolerable too. I'm only extra sensitive to sound, the TV makes me freak out, so volume is on 1. Insomnia is part of it and when it comes, I use that period to say my prayers.

Please try and divert your attention away from it, so the side effects come unnoticeable. We have gone through the worst, tamoxifen too will pass.

runor

Had my oncologist 'phone' appointment today. He asked how I was and I said I hate to complain but...I am really tired of all my joints being seized up like they are. Sleeping hurts. Moving around in bed hurts. Rolling over triggers a leg cramp. Sleeping has become scary. I never know what's going to get me, a locked shoulder, a screaming leg cramp or a tsunami of sweat. He told me to go off tamox for a month and see if there are any changes. At end of month go have blood test and see if I'm menopausal and if yes, maybe try different hormonal. So as of today I embark on a break, which he assured me was safe to do. I am hoping my pain eases off, if not it will just mean that I'm old and creaky. I HOPE my periods DO NOT come back!! I have not had a period since I took my first dose of tamox Aug 2017. Nothing. Not a drip or drizzle. And I am happy about that. If my periods come back I will freak out!! So today an experiment begins!

AMotherof2,  having just written what I did, most of the side effects are annoying, but not debilitating. You will learn to deal with them, whatever they might be. They will become background noise. I really have run out of patience with the pain in my joints and the lack of mobility and energy. But like I said to the Onc, the devil you know is better than the devil you don't know and I might opt to go right back on tamox knowing what I'm in for because at least I KNOW and there won't be any surprises. I really don't like surprises. SURPRISE, you have breast cancer! That was the last surprise I want for a while. 

BlueGirlRedState

I took tamoxifen when I was already premenopausal or menopausal (52) vs drug induced menopause. That probably makes a huge difference in SEs. I also got leg cramps especially in the left calf. They could happen anytime - resting, falling asleep, stretching, walking/hiking, and once while swimming. Magnesium supplements really helped, and staying hydrated. DR also suggested potassium ( you do not need much). Form of Mg makes a difference for some people. I hope you find relief. I take Arimidex which is really taking a toll on joints in the left hand, but does not seem to give cramps. I'm hoping it is not destroying my bones.

Rah2464

Runor glad your Onc is responsive to what you are experiencing. I hope the month off "resets" things and you feel better.

For me, the 10 mg twice a day seems to have pulled me off the cliff of side effects for now. I still have the fatigue though but at least the hot flashes and leg pains/muscle spasms are much less.

CarolS-60532

Thank you for sharing the 10 mg twice a day solution. I started on tamoxifen 20 mg once a day about 90 days ago and just asked last week to be taken off the stuff due to horrendous hot flashes that persist many times a day. I went through real menopause back when I was in my 50s -- but this is way worse than that experience. Oncologist said stay off the drug starting now until I finish radiation treatment and we can talk. Now I have something to talk suggest.

Rah2464

Carol - I hope this might work for you as well. My Onc's theory is we will reduce my "peak" dosing in a given 24 hour period while keeping the targeted low level of medicine in my system. I am not having any problem remembering when to take it because I have a diabetic cat who gets shots twice a day. So I shoot the cat, pop my pill. Ha

CarolS-60532

Thank you for your encouragement. I once had a cat who was in kidney failure needing dialy shots so I understand your routine... Carol

runor

Well. I find myself in a surprising predicament. I am second guessing myself. Which is good, I think. I think charging into situations always thinking your 100% right is a good way to end badly. But that's another topic for another day. 

Oncologist suggested a month off tamoxifen followed by blood tests to determine if I am menopausal. He hopes that this month off will see if I feel a physical improvement or not.   Although I wonder if a month off is even enough time to get a good reading. Whatever. The blood test at month end is to determine menopause status and see if I can go on another hormonal. 

I read the report he wrote to my doc. It said basically that I was having some tolerance issues and he hopes that by changing me to a med that offers better quality of life I might actually take 100% of the suggested dose instead of the 50% that I take now. Oh. So this is a problem? At no point did he say this was a problem. In fact when I told him why I was going with 10mg a day, because the most effective lowest dose was never, ever studied, he agreed, that research was never, ever done. He did not freak out and inform me that I was putting my life in jeopardy, because he in fact has no scientific basis upon which to make such a claim. So he didn't. Which I thought was fair and honest. And now I read  that maybe he wants me on 100% dose of something? Hmmm.

So for the past day or two I have been thinking about this. I am over half way through the 5 years. Although tamox has been one heck of a ride, I know what to expect and while not happy about it, I am functioning (that's a pretty loose definition of functioning!). So do I want to quit tamox, take something else for 6 months that might have different effects, maybe worse effects, then quit that again and go back on tamox and start over with the effects that I had at the beginning (which were quite awful but that changed over time)? Or do I want to just suck it up, stick it out, stay with my 50% dose, deal with the leg cramps and creaky joints and hot flashes for two more years, but at least avoid the potential unpleasant surprise of another hormonal? I realize that my life might get better on another hormonal. Or it might get worse. Am I so bad off now that I'm willing to risk things getting worse? I think the answer is no. I am not willing to take that risk.

What I know about myself is that I don't like surprises. Good or bad, surprising me is always a really, really bad idea. So if I change tamox and I am worse off, I will be really, really mad and then run the risk of digging my heels in and refusing to go back on tamox. Because I can be stubbornly obstinate that way. In light of this I think I have decided to NOT take a month off, to NOT change hormonals, to stick with this until the end. Onc says my increase in outcome with a different hormonal is negligible at best. I really gain no benefit but might feel better. Or worse. And I might get my period back on a different hormonal. OH HELL NO! 

I am typing this here to see if I make sense to myself. Pretty sure I don't make sense to anyone else. But I think just staying the course with no surprises is going to serve me best, leg cramps, hot flashes, aching joints and all.

edj3

runor, I can well believe that once you make your mind up about a course of action, because you've thought it through and it's your plan at that point that you find yourself doing ok even if the side effects still suck.

Wow . . . that was a really long sentence. Sorry.

Salamandra

runor, sounds like you are choosing the 'devil you know', which is very valid!

I think many docs are inherently conservative, but any prudent one would be even more conservative with what they committed to paper/reports. I think they probably have to cover their own asses for any departures from standard-of-care treatment.

How many years do you have left?

runor

Edj, I admire a long sentence. 

Salamandra, you are exactly right. I am choosing the devil I know rather than the devil I don't know. I do know that tamox carries some protection from bone density loss, which is a small bonus. I have not heard this said of other hormonals, although I admit I lack knowledge of them. I have two years left. I think I can tough it out. I'm over the hump. But this really makes me wonder how exposed and vulnerable I will feel the day they say that's it, you're done, no more pills for you. Will I walk around feeling like I have a target on my back? Do I have a target on my back now? I think I always DID have a target on my back, cause ain't none of us getting out alive! It's too late for heavy philosophy! Now to inform my onc that once again  I'm going to not take his medical advice. Lord, he's going to have me committed!

edj3

"Will I walk around feeling like I have a target on my back? Do I have a target on my back now? I think I always DID have a target on my back, cause ain't none of us getting out alive! "

Yes, this exactly. We usually pay no attention to the fact that none of us get out of this life alive

GoKale4320

Runor - I read somewhere that there is a benefit to taking Tamoxifen for a while and then switching to an AI. I think you have a good plan, but thought I should mention this. Here's an article:

https://pubmed.ncbi.nlm.nih.gov/15347434/

BlueGirlRedState

runor - if you do switch fom Tamoxifen to AIs, you should get a baseline bone density scan. While Tamoxifen might strengthen bones, AIs seem to weaken them.