Bottle o Tamoxifen
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Thank you for describing the way I feel. It is so hard to explain. It’s like a delay in by brain’s ability to comprehend and respond. Plus I find myself doing really wierd things.
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For those of you who are trying to identify the brand of tamoxifen you have, the following link should be of help. You can look at the markings on the pill and know the manufacturer. It also lists the additional non-active ingredients. To me this all gets tricky because the distributor name is shown a little more clearly on the packaging and the distributors seem to change.
https://www.drugs.com/tamoxifen-images.html
I am having problems with dry eyes with the Teva brand that I don't have with Watson/Actavis. So many strange side effects.
I truly sympathize with all the ladies with the stomach issues. I suffered through that for the first month until some Omeprazole knocked it back. Happily it has not reappeared.
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FindingOptimism,
Thank you for that link, bookmarked it!
I'm not sure if the omeprazole is finally kicking in for me after over two months, or if the low acid diet I've been aiming for has made the difference, but I think my stomach issues may finally be calming down. Though I miss my pineapple juice!
I'm a bit concerned about being on a PPI long term but I can only worry about so many things at once, so there it is.
I'm really hoping the new tamoxifen brand will help with the fatigue. But I think I have to call my pharmacy because it should have been here already!
It's a bit annoying that different women have different side effects with the same brands. Like, you really have to try everything personally. Only so far that someone else's experiences will get you.
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AlceBeStable - so many drug interactions out there. I only take 2 Rxs, several supplements, and sometimes worry if I should find out more about supplements as well. I quit lisinopril 4 years ago because of a persistent cough, this was before tamoxifen or AIs. Cough went away immediately when I switched to candesarten. Lisinopril and candesarten are in different drug classes and work differently to lower BP. I am seeing my primary next week becasue my BP has gone up anywhere from 10-25 pts with a new bottle of candesarten, which turned out to be a different generic from the one I had been taking. The increase was almost immediate, within 2nd or 3rd day. I now need to ask about drug interactions - if there is any concern with the BP drugs and tamoxifen and if I should be screened more regularly for diabetes. Last test in 2017 came out ok.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.
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Hi Ladies,
So I have my 6 month MO appointment in 2 weeks and I have started my list of questions and SE. I was wondering what you all have put on your list of things to ask your MO about?
Hope you all have a good Friday and weekend.
Hugs,
Sara
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Hi Sara
When I started Tamoxifen 6 years ago, I asked: "When should I take it, morning or night? What kind of SE"s occur with it? Do I take it with food? Any suggestions for dealing with the hot flashes if they occur? Should I take an anti depressant to deal with the hot flashes?
I take Tami in the morning without food. I do have hot flashes now and then. They are annoying and there are natural ways to deal with them. Also my joints seem to ache at night otherwise it is pretty tolerated. Hope its been kind to you.
Hope this helps and maybe others will chime in. Take care Jill
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sm627, one of the items on my list is what kind of compression stockings she recommends for an upcoming long flight or if she has other ideas for avoiding DVTs
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Hi everyone,
sm627, I really can't think of any questions of my MO - except maybe if they have heard of the lower dose of Tamoxifen. Or what they can suggest for Hot Flashes (If you have that SE) Or maybe : What test will they do to determine if your Tamoxifen is working, and what tests do they take to see if "all is well" but since its been almost 2 years for you, you have prob asked all of those! Maybe ask if taking CBD Oil is ok with Tamoxifen ( the "cannabis" thread on here someone had a post that said CBD Oil stops the Tamoxifen from working)
Hope you have a great check up!
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I am so tired of taking this pill. I used to be active, since taking this pill I have muscle aches and bone aches. My knees and hips crack all the time. I am in soooo much pain right now. I have arthritis in the left hip, my onco says to get heart rate up so I walk, I got to continue to do this, but my hip is messing me up. I really want to quit taking Tamoxifen, it has ruined my body and my brain (the solitude thing you all talk about, forgetfulness, etc.). Can't sleep because of the pain in the hip, radiates to the groin and then down to my knee and now my foot feels like something in it is vibrating, very weird feeling. I just don't know.
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LomLin - I'm so sorry you are in pain. Can you take a break from it?
The reasons you stated (muscle probs, joint pain, brain issues) is why I stopped it 3 months ago. I was becoming a shell of the athlete I used to be, and I was unhappy. It was supposed to be a 1 month holiday to tease out the cause of my symptoms. MO was blaming all my symptoms on menopause (I'm peri-memopausal per labs, not full menopausal), I blamed some on having taken Levofloxacin during chemo which is an antibiotic that can cause permanent muscle/tendon damage). The muscles and brain issues started to get better at 2 weeks off it - I was euphoric! 1 month off it was not enough - I wanted more time. It took at least 2 for the joint pain to start improving. I opted to stay off it longer. Tonight I'm supposed to go back on it (dreading it), at a lower does - 10mg which MO agreed with after asking another oncologist who specializes in only breast cancer. I already decided I would only try 5mg and cut the pills in half. That's it. If same symptoms return - whether in weeks, months, or years - I will quit completely. My life, my choice. When I first started Tamoxifen I didn't notice much for side effects (I also blamed side effects on other things) but after 2.5 years I was so freaking miserable on it. Turns out it was causing most of my symptoms. I have to keep reminding myself it is a choice to take it. Quality of life matters.
- xo
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SM267 - Asking questions about Tamoxifen. If you are experiencing SEs be sure to ask about those and what you can do. SEs are so variable with any drug and any individual. Even differences in generics or brand names can make a difference. One SE I was having were cramps in my calf, usually left leg, and sometimes quite painful. These can come during rest, stretching, exercise, incuding swimming. I was already taking magnesium, and switched from magnesium citrate to magnesium glycinate after reading a blog on this site. My oncologist suggested that I might want to take potassium as well, use electroytes, and stay hydrated. I think the switch to a different mg supplement helped. Maybe the potassium helps as well. You can take too much of both of those. I also started using a foam roller at the gym. I do not seem to get cramps as frequently as I was over a year ago. Ask about any lifestyle changes (exercise, diet, supplements,alcohol etc). You might want to ask about any concerns for increased risks of diabetes. https://www.ncbi.nlm.nih.gov/pubmed/21935915 https://www.ontrackdiabetes.com/diabetes-news/type-2-diabetes/breast-cancer-medication-may-increase-risk-developing-type-2 My oncologist suggested diet changes for me would be important, given my love of bread, pasta, and brown rice, and family history. She also thought I might want more frequent monitoring than every 3 years or so. I see my primary this week, and will ask her about diabetes monitoring. One question that has always nagged me, is "how do we know tamoxifen really works?" and are there any metrics for the individual, something that can be tested? Good luck to you.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better
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Good afternoon everyone!
Has anyone had bouts of anxiety or panic attacks?
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How many of you guys had a bone scan before beginning tamoxifen? I'm about 3 weeks in and my dr never mentioned it. I go tomorrow for a check (I guess my 3 month check) and was going to ask her about bone density testing...also...I didn't have my period this month (I'm not pregnant) is it normal to not have a period 1 month in to taking the meds? (I'm almost 43)
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Hi All -
LomLin : I have the exact same symptoms, but I havn't started Tamoxifen yet. Its from a flare up for my Auto Immune Diseases. So I am wondering if starting the Tamoxifen will make my symptoms worse or I'll stay the painful same. I shall see.Was suppose to start April 1st (Tamoxifen) but when I went to the Chiro yesterday, she noticed a huge ugly rash on my back. (Good excuse to NOT start my Tamoxifen) it is prob caused by the new medication my Rheumatologist has me on: Methotrexate.
I do plan to start Tamoxifen at 5mg for about a month, then work my way up to 10mg (against my MO's blessing) I doubt if I'll go up to the full 20mg dose. Again, I shall see. Its better than nothing.
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I had a bone density test after I stopped Tamoxifen for surgery (Nov) and before starting it again (March). I have been getting these regularly for about 15 years so it didn't have much to do with taking anti hormonals. Insurance will only pay for tests every 2 years.
My MO didn't mention anything about a bone scan which is different from a bone density test.
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Jen2Mom, I was 53 and having regular periods with no sign of slowing down. I have not had a period since I started tamoxifen. Nothing. Nada. Nil. Not a drizzle, not a spot, NOTHING. The last period I had was July 2017 during my radiation treatments. When they ended I started the tamoxifen August 2017 and I have not had a period since. Bonus.
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I just don't understand something.
It's 72F in here, and I am sitting here, wearing a sweater and jeans and cold. This is not unusual.
But in a few minutes I will change in to my pajamas, cotton athletic pants and a baggy, long sleeved cotton T shirt, and climb in to bed, and within about three minutes of laying down, even with covers off, I will, without fail, have a hot flash, and I will continue to have these throughout the night until I rise for the day, at which moment I will revert back to being cold.
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Wc3- I’m similar. Here’s what works for me- no long pajamas, just t shirt and shorts. I also sleep with the bedroom window open just a bit, even in February. My room is Cold! But I have a thick comforter and a few layers of blankets that I can adjust as needed. Thankfully my husband is a big guy and doesn’t mind the cold. Some nights I can get 5 hours without waking up from a hot flash! (Rarely, but it does happen!) I do miss wearing warm fuzzy pajamas, but I miss sleeping more. I find the faster I can cool off and nip that hot flash, the faster I can fall back asleep.
During the day I just leave sweatshirts and fleece jackets all over the place. I’ll take one off for a hot flash and then move around the house and forget where it is, so they’re just everywhere.
And it is weird- how 70 feels cold when you’re up moving around for the day but for me at least, WAY too warm for sleeping. Makes no sense to me either!
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I Hear you all you Hot Flashers - I have so many hot flashes its ridiculous - It was 17 degrees the other night, I had all the heat off except utility room, and my window open, just a sheet on. I have to change clothes at least once a night. I wake up drenched from head to toe. Then I'm cold and wet. I was told to take Magnesium.. I have. No relief yet.
Well, I did it. I started my Bottle of Tamoxifen last night at 11pm. Just 5mg. in the middle of the night woke up at 3 am nauseous - took Compazine. I need a 5 year countdown clock.
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Does it cost? Does the website send spammy ads to you?
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Thx Cpeachy - I can't figure out how it works...There is no "enter or save' button. I am the worst techy!
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Good questions! I honestly have not used it personally, I knew of it because someone used it as a countdown to their wedding. I can ask and find out!
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My doctor advised me to take 'AM/PM for menopause' it really does seem to be helping.
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DeeBB - you mean 1/2 in AM and 1/2 in PM?
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has anyone been prescribed ADHD meds to combat the exhaustion from tamoxifen. I’m exhausted and i cant take it anymore. Looking for some recomendations
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Hi Florida1234-
We want to welcome you to our community! We're so sorry you're experiencing this side effect from your treatment, we know how difficult the side effects can be to manage sometimes. Hopefully someone in the community can share some insight and offer some guidance and suggestions!
The Mods
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Hi Andraxo, yes I would like to stop this, I will be talking to my Oncologist about this, or maybe reducing it. I didn't know there were lower dosages of Tamoxifen, I am on the 20mg. Maybe, but doubt it, there would be less side effects.
SM267 here is an interesting thing. In this forum I have read taking Magnesium helps with the leg cramps, which it does, kinda. So just last week I tried Orthotics, the ones called Walk Fit and used the lower one (they have medium and high inserts into the Orthotics itself). And the leg cramps have gone away. So stretching out the arches helped with the leg cramps. Yay!!! https://www.walkfit.com/
DeeBB yes I am taking Xanax as needed for it, helps a lot. I also have a friend that believes in CBD Oil.
Jen2Mom bone scans are necessary. Typically you can't see a difference in the tests if you go more often than needed, so go every 3 years. Tamoxifen helps with bone loss, ONLY if you are post menopausal. https://www.breastcancer.org/treatment/hormonal/se... - As a benefit, SERMs also can improve bone density, which reduces the risk of osteoporosis.
rljes yes I was hesitant in taking Tamoxifen but I finally did. I really hope this works and just for 5 years and not need to go on for another 5 years. I haven't taken it for a year yet. But I take 20mg. I take mine in the morning with food.
WC3 oh yeah I have chills in 72 degrees too. So silly and then like you say in going to bed with a window open have a hot flash. But rarely, I am 64 years old so I am post menopausal, so I do get the occasional hot flash, they don't really bother me.
Cpeachymom tried the count down clock, doesn't go past 3 years.
So now I decided to take extra strength Bayer aspirin without the caffeine and see how that goes for my arthritic hip pain. I have taken Naproxen (Aleve) didn't work and lots of Ibuprofen, maybe kinda sorta worked. We will see about the Bayer.
Anyway hope you all have a nice weekend, still waiting for spring here in Illinois.
xoxo
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Hey Florida1234,
I was already taking ADHD meds before I started tamoxifen, and I still got completely wiped out. I basically quadrupled my dosage, and I think it helps me make fewer dumb ADHD mistakes when I am functioning. But I still get totally wiped out by early afternoon.
I decided to try different brands and see if I can find one that is better - based on reading other threads here. So far, the 2nd brand is not any better than the first, but there are a lot more brands.
I have an important two weeks at work now when I cannot afford to to have so many lost hours of productivity. I started breaking my tamoxifen tablets and only taking 10mg instead of 20mg. I would have gone off completely if that didn't help. But the half dose is making a huge difference. I am planning to go back up to the 20mg after next Wednesday, give the new brand another week or two, and then call my pharmacy and request a different one. If all else fails, I'll go back down to 10mg for a while, maybe until the 1 year mark, and then try to go up again. Maybe my body will have built up some adaptation by then.
I really wish they had more research on the efficacy of lower doses of tamoxifen.
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