Bottle 'o Tamoxifen

Scottiemom11

Momoftwins. . .I have a history of ovarian cysts so MO looked up the info and Tamoxifen can cause cyts as well as thickening of the uterine lining. That's why I was on lupron for several months. Some women tolerate lupron well. . .I'm not one of them so I stopped and am crossing my fingers that I don't get a cyst. Also, Tamoxifen does not stop cycles in everyone. I continued to have mine until MO started the lupron, so mine may come back.

I also added a gastroenterologist to my list of docs. I had an upper endoscopy earlier this month and am scheduled for a gallbladder scan and colonoscopy next month. I feel like a human guinea pig but at least this will give me total baselines. Gabapentin works great for me.

Hugs Scottie

MJS1266

I take mine in the morning after breakfast. If I forget I take it after lunch. I haven't had any nausea and only mild hot flashes or other SEs.

NormaJean65

To the new ones on the list.............I'm 1839 days out & my biggest complaint is this thinning hair & complete lethargy . Got just under 4yrs. 11 mons. & a hand full of days to go. Prayers & wishing you the best.

Scottiemom11

NormaJean. . .may nails are paper thin from the meds, but ironically my hair has gotten thicker and fuller.

Scottie

Wendy3

I find the oncologists don't like you taking any supplements besides calcium and magnesium . I have been taking grape seed extract and curcumin for seven months now. I doubt I would be doing as much as I'm doing without these. Anything that reduces inflammation in the body is a good thing as cancer loves what happens when we are inflamed. So I will have my first scan in six months in February I will let you know what the outcome is. 

ksusan

And D! Mine is good with curcumin and everything my ND has added so far.

I'm at the end of 5 months with only manageable side effects.

Suzanne50

Saw my MO yesterday for my first month Tamoxifen check in....he said the most SEs are in the first 90 days. Don't know if that is true but that's his take. I still just have the night sweats but like I said, had those before Tamoxifen. I have some muscle pain but think that is due to my exercise. I don't know. So easy to blame everything on the pill. No real complaints so keep up chugging.

ksusan

My experience is not that most SEs are in the first 90 days. Rather, they seem to wax and wane.

lala1

Same here. None of mine really started till about month 3 and that was the joint/muscle pain. Then around one year I started with nausea, dizziness, and sinus issues. The nausea and dizziness eventually passed (I think good probiotics helped with that.) and I have the pain under control. All I'm really left with is a slightly runny nose and some ringing in one ear which I think is probably a mild chronic sinus infection. Not much I seem to be able to do for that, so I live with it. Guess it could be worse!

TinyDancer5

This is my 10th day on Tamoxifen. I take it in the morning at breakfast and by the afternoon I have the chills. During the night, instead of the usual night sweats I've been having for quite a while, I have hot flashes where I throw the blankets off and on again. Those are the only side effects I have noticed. If I took it at night would the opposite happen - cold at night and hot flashes during the day?

molly1976

I don't always take it in the morning but no matter what time, I still get most of my hot flashes at night. I don't know if they're just more likely to happen when we are relaxed or what. Mine are pretty mild, though, and like ksusan said they tend to come and go. Sometimes I don't have any for a week and then I'll have a couple of really annoying days. I've been on tamox for six months now.

Sloan15

Still taking my crapload of Tamoxifen (40 mg/day), and I feel fine. No SE yet aside from hot flashes that I was already getting from being premenopausal. Hang in there ladies! I have an appt on Feb 18 and will ask my doc why I need so much Tam. He assures me that 40 mg/day is the correct dose for me. I'm 5'8, a few pounds overweight but not a lot, and 51 years old. I'll share what he has to say.

TinyDancer5

Sloan, I'm taking 20 mg/day, 51 yrs also.

RobinLK

My SEs started at the 6 month mark and became progressively worse. Once my ovaries came out, most of my SEs disappeared. Still have ringing in the ears but that is manageable.

jbokland

Interesting information on Dosing recommendation

lala1

RobinLK--Have you found anything that stops, or at least reduces, the ringing in the ears? Mine is only in one ear and it's not terribly loud but does make me a little nuts.

RobinLK

Not yet. I am trying to retrain my brain to listen to noises other than the ring. Some days it works, but not always. Supposedly, white noise machines can help. It is thought to be a brain issue more than an ear issue, but seeing a doctor is recommended. Hearing aids have also been known to help, as it improves the ability to hear and focus on background noises other than the "ringing."

Edited to add closing parenthesis.

DeeRatz

I too have ringing in my left ear. It started after my first chemo treatment. I mentioned it to my MO and he told me that wasn't one of the side effects from chemo. Well for me it was because I definitely didn't have it before. I haven't noticed that the Tamoxifen has made it worse. I can tune it out most of the time, getting used to it.

Sloan15

I get ringing in my ears sometimes now that I'm on Tamoxifen. Fortunately, it comes and goes.

I went to the eye doctor and had them take a picture of the blood vessels in my retina. I have a small retinal opening that squeezes the vessels -my normal self-- and the docs want to make sure the Tamoxifen doesn't put pressure on those vessels as it will put me at risk for a stroke in my eye (especially since I"m on 40 mg/day). Joy.

lala1

I had the pictures taken of my retina as well. I had it done when I started the Tamoxifen as a baseline and redo it every two years to make sure I'm not developing a problem.

loriekg

Sloan...I had heard that Tamoxifen can cause vision problems but nothing specific. Have you been told that there can be an increase in pressure on the vessels in your eye? I have had a couple of episodes of subconjunctival hemorrhages (more than ever before) and now I'm wondering if this could be related.

On another less serious eye topic...have any of y'all had your eye lashes come in pointing toward your eye?! This is driving me crazy--it seems these lashes are tiny tiny and even with my 10x magnifying mirror, very difficult to find! I don't think there's anything that can be done, but I was just wondering if I'm the only one!

Sloan15

lala - what are they going to look for in the comparisons? What did your doc say was a potential problem?

Loriekg - I only know about Tam and an increased risk of dry eyes, floaters, and retinopathy. Call your doc or eye doc if you're worried. The risks of eye problems are very very rare, but I have a defect in my eye that the need to watch.

lala1

The day I first met with my BS, which was the day after I found out I had BC, he sat down with me for 3 hours and wrote out a diagram as to how my BC could play out. He basically laid out how they first determine if you're ER/PR+ etc on to MRIs, surgery, lymph nodes, possible chemo and/or radiation and so on. I still keep this piece of paper and refer to it sometimes. One of the things he wrote down was the pros and cons of Tamoxifen and AIs. I was premeno so Tamoxifen for me. "Tamoxifen pros: increase survival by another 12%, lower risk of recurrence on cancer side by 50% and lower risk of occurrence on clear side by 50%, and it protects bones. Tamoxifen cons: hot flashes, some increased risk of cataracts, some increased risk of uterine cancer, some increased risk of blood clots."

So as you can see, Tamoxifen can mess with the eyes. He said small chance of cataracts so I'm guessing that's the main thing they are watching. My ophthalmologist agreed with him and has me do an annual eye exam and a retina picture every 2 years. I'm now menopausal so I guess I could swap to an AI but I've got that pro and con list as well which says I'd have a 56% decrease in my risk of recurrence on the cancer side and a 60% decrease on the clean side. But as my BS pointed out, I would have a much increased risk of losing bone density and he feels the greatly increased muscle/joint pain isn't worth the few percentage points. I've learned to manage the Tamoxifen muscle/joint pain pretty well so I'm not real keen to upset the apple cart just yet. (But I would like to reduce my risk of blood clots!)

My BS is very highly regarded in his field and I think he's just the cat's meow so I listen to his opinion. And my MO is almost as good and agrees with this course, so here I am!

Sloan15

Thanks. He does sound like a good one!

ayr1016

So glad I came to this thread tonight. I have a corneal disease and I am finally seeing my eye specialist again this upcoming week. I have not seen him in about 2.5 years (due to insurance). My specific corneal disease causes very dry eyes. So, I will be mentioning the Tamoxifen to him in regards to my corneal issues and possible problems it could cause.

motherofmany

Hi ladies,

Tamoxifen for 1 week now and only aching bones. Hot flashes seem no worse then with chemo...which weren't too bad.

Sloan: I too am 51 and on 20mg only. I asked my doctor why this dose and he told me this was standard dosing.

solfeo

I have been waking up in the mornings seeing multiple small black dots. It only lasts for a few minutes when I'm first exposed to light. I have been sleeping in pitch blackness since I started the tamoxifen so I thought it was just a normal adjustment to light, but after reading these posts I wonder if it is the beginning of problems. I guess you could call them floaters, but they are not always there and don't look exactly like the few others I have had for awhile prior to dx. I better get to the opthamologist. I was not recommended to have any baseline checks of anything but liver enzymes.

Concerning other side effects, I'm 2.5 months out and my hot flashes do wax and wane as others have said. I just went a week without hardly any, which had me concerned it wasn't working, then yesterday felt like one long hot flash all day and night. Luckily they are not severe so they are more of an inconvenience than a real problem. My insomnia that I have had from the beginning seems to be getting better, so there may be hope for some of you just starting and having that problem. I'm still having problems with muscle injuries that I wasn't having before the tam, though. I had torn the soft tissue around my ribs just doing gentle stretching exercises, which took a month to heal and kept me from exercising. Then as soon as I got back to it I injured my calf muscles walking up a couple of flights of stairs. It wasn't even enough to tire me out but the next day my calves hurt so bad that it was painful to even lie in bed. That was another week off of exercise. I'm back to walking daily now, and so far so good. I'm afraid to do anything else at this point.

I just have a love/hate relationship with this drug. I love it for the benefits and feel grateful to have it, but I hate the idea of taking something daily for so long that causes all these weird problems. Science can't come up with something better than this?

Suzanne50

I also have some joint/muscle pain. But it is hard for me to differentiate between exercise pain and pain due to Tamoxifen. I exercise every day - with weights, walk, etc. I feel like I pulled a muscle in my top thigh. But it has been a week and hasn't gone away. So am wondering if this is due to drug? Hopefully Tamox won't prevent me from doing what I love to do which is moving this aging body. I guess I just have to wait and see. I am about 1 month on it.

lala1

I think Tamoxifen is like a mild chemo drug....it compromises your body but to a much lesser degree. I think it makes you a little more susceptible to colds, a little more likely to injure yourself and then a little more likely to take longer to recover from that injury or cold or whatever. I hadn't had a cold in 15 years till my first winter on it which was 9 months into it. Now I get 2 or 3 colds every winter. Right now I still have a runny nose and ear ringing and my last cold was a month ago. And I've been going to the gym most days for the last 2 years and right now I have pretty severe heel pain that's worse when I don't move. Plantar fasciitis? Who knows. Don't remember specifically injuring myself so I think it's the med making me more susceptible. And my MO makes me take an aspirin. When I started it was daily and I would get some bruises that were real doozies just from something as simple as resting my chin in my hand so I swapped to twice a week (which he says works just as well). I still bruise pretty easy and it takes longer for them to go away so again, Tamoxifen? I hope so, Otherwise it just means I'm getting old!!

jbokland

lala. I went throug a few plantar fasciitis flare ups. Stretching is the best treatment!

I have upper thigh aches when I'm sleeping. I'm stiff when I first get up from sleeping too long.

I was telling a friend about how tamoxifen blocks your estrogen production. She asked me if I grew a penis yet! Bahaw!