Bottle 'o Tamoxifen

my oncologist's response to my inquiry about the OneOme test:

"There has been a lot written and published about Tamoxifen and its metabolism. I have read much and listened to the experts debate this over the past 10+ years. In short, the consensus is not to test. The pharmacologic tests available are not effective in interpreting the persons individual levels. It is now known that there are multiple metabolic pathways that effect Tamoxifen; the test advertised does not do (and no available test currently does) an adequate job in this way. There is very soft data on response to treatment that the majority does not endorse.

And what if your levels were low? Would you be willing to take higher doses? Or an AI? I would not use this test to guide your treatment.

I can't talk about how the test does with other drugs. But as the buyer, please beware"

She is right in that I would not take a higher dose, nor an AI. In fact, if this test said I didn't metabolize it well then I would use that to justify why I shouldn't take it at all. I'm still on a holiday from it anyway. My 1 month holiday for January has turned into three now, and still counting. I will re-start/try a lower dose....when I can get myself to take it. It just sits there on the counter staring at me. It is hard to take something you hated - hard to reintroduce joint pain and muscle weirdness and leg swelling and moodiness/crankiness, and so on. I didn't hate it the first 1.5 years on it (didn't notice much), but the last year leading up to the holiday sucked (for lack of a better word) as if there is a build up/toxicity level.

I just started Tamoxifen, about 9 days ago and so far no side effect at all. I'm  just taking it day by day and praying that I don't have any side effects. 

Andraxo thank you for the information from your MO. My MO is on vacation this week, so I am interested to hear her take on my results. And based on my reading to date, yes, there is still controversy on what to measure. But boy wouldn't it be wonderful if we can get there so folks can make individually tailored decisions? I know pipe dream.

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.

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.

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

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! 

Beaverntx and rljes

Thank you those are great questions to ask. Thanks for the good wishes too.

Hope things get better for us all.

Wishing you a good week.

Hugs

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

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)

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.

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.

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. 

Does it cost? Does the website send spammy ads to you?

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!