Bottle 'o Tamoxifen

Katiejane777

Hi everyone! I’m due to start Tamoxifen on the 1st March. Any tips or things to watch out for? I was so stressed about starting Tamoxifen but I’m feeling a bit better about it now. My MO wants me on Tam and then Zolodex once he can see I’m coping with Tamoxifen. He eventually wants to take my ovaries out but I am very nervous about that. How has everyone else coped who has had their ovaries removed? Is there a thread somewhere? Lol I’m still trying to navigate my way around these boards.

shelabela

I take mine in the morning. They are sitting right by my coffee cup I set out the night before. I also have 2 containers on Sunday I count out 7 pills and put them in the 1 container. What ever works.

Runor, memory loss sucks. I am so horrible some days.

Lewhy

Hi all, I take my Tamoxifen with dinner. I thought if I took it at night I would get most of my hot flashes then, instead of during the day. I've only been on it a week and have noticed more hot flashes, mild nausea, which I hear goes away, and I've had some headaches. The worst is the hot flashes! They are terrible. I haven't noticed any memory issues yet, or maybe I just don't remember, lol! If these are the only side effects I get I feel lucky! I had a hysterectomy about 8 years ago, due to fibroids. I still have my cervix and one non working ovary. I had the blood test prior to starting tamoxifen which did show I am post menopausal.

EastcoastTS

Thanks for the nutrition link, Jpbcfree! I watched the soy discussion and kept the site for more viewing. Lots of studies to back up what he says. (I still eat soy.)

I take Tamox in the evening. I just started doing it before bed and it's worked out well. I place it on my night table so I see it. I'm only forgotten a couple of times, then I just took in the morning.

tlfrank

I take mine at night right before bed. Was advised to do this based on likelihood of hot-flashes occurring shortly after taking it.....(Dr was hoping I would sleep through it I guess). Have been on it for 6 weeks now and have a consult tomorrow to discuss any side-effects. Has anyone else had to go in 6 weeks after starting it? My Dr. also is making me come in every 6 months in order to sign a new treatment plan (acknowledging risks). Does this seem right?

Capecodgirl

Hi Katiejane-

I had my ovaries removed in November 2017. Laparoscopic BSO. I did not want to have it done but ended up doing it due to brca2 gene mutation.They offered to take my uterus as well, but I said not if it is not necessary. Now I kind of wish I had it taken out but too late now. Surgery and recovery was very easy for me. Regarding coping after with no ovaries, I do not really feel much different. The main thing for me is I have noticed my fingernails are splitting and cracking and breaking. Dermatologist said probably from lack of estrogen and suggested adding collagen to my diet. My hands get very stiff at night and from time to time during the day. Osteopath says that is likely from the tamoxifen. Also my knuckles are very swollen and I cannot get my rings over them. All in all for me it is hard to know if the different SEs I have are from tamoxifen, lack of estrogen, or just getting older.

I have not seen a thread regarding this topic.

Good luck with your decision. It is not an easy one to make .

Barbara

lala1

Runor---I want to come live with you. Between bacon and vodka, I could stay forever!

Katiejane--I just finished 5 years on Tamoxifen. At the end of year 2 I had a total hysterectomy including cervix, ovaries, the whole shebang. Looking back it was difficult in the beginning but definitely got better. Once I figured out some of the ways to combat the SEs it got easier. The nausea and dizziness to longer to get past but I found a good probiotic really helped. And turmeric, ginger and magnesium along with fish oil and Vit D (5000IU) seemed to get me past the muscle and joint pain. And I found that the more I exercised the better I felt. And if at all possible, get a massage every once in a while. That really helped with the tightness/scar tissue after the mastectomy. Also, the hysterectomy was probably the easiest of my surgeries. Unfortunately that was also when my hot flashes started for me but again, one iCool pill a day made them very manageable. And I feel much much better not having the hormone fluctuations and period every month. All in all, I'd say that for me Tamoxifen was okay. I didn't like the 15 pounds I gained but that will just give me goal for this year!!

Katiejane777

Thank you Caoecodgirl! I am really scared to do it. I have two other friends my age (46) with my exact diagnosis and they both were only offered Tamoxifen, I have a different Rad Onc who treats another friend with Tamo and Zolodex but she is much younger than me. I’m going to have a chat with him when I see him in March. If we didn’t have oestoperosis and heart disease in my family (ironically only 1 person has had cancer other than me!) I might be more for it. Ugh.

Katiejane777

lala1 Thank you! I’m hoping I do well on Tamo and Zolodex. To be honest I’ve never done well with hormonal stuff so I am a bit nervous..

I guess I have the option to do Tamoxifen and Zolodex until I’m a bit closer to menopause. I wonder if that makes a difference?

I have never heard of icool. I will look into that.

Chiarara

Katiejane777, maybe just get an ultrasound of your ovaries/uterus. Tamoxifen can sometimes cause issues, and that way you have a ‘baseline’ of what the area looked like before T. I had one, because I have a gazillion fibroids and endometriosis. I’m 45, so about the same age

However, so far not many SEs (2 months in, mind you). I initially took it at night, then got insomnia so decided to take it in the morning in case that helped with the insomnia. Slowly moved it forward in the day over about a week. Not sure if it did help with the insomnia, but I now take with breakfast. Insomnia much improved, but that is probably the yoga!

Trvler

I don't notice the hot flashes within any period of taking it. I notice them more when I have been sitting for a while. I get cold, then hot. Or when I am sleeping...again cold, then hot. I think exercise (because I am moving) helps. I don't really notice many hot flashes during the day.

Just a note on the magnesium. Be careful when you take it. I take it at night before bed. But it will give you diarrhea if you are not having a problem in that area. For me, it was a godsend because I was constipated my whole life. But I make sure I am home for a while in the early am.

Trvler

I should say it CAN give you diarrhea, not that it will. Also, you can start with a smaller dose and increase it as needed. I take a big does, especially when my kids are home. They stress me out so I can't go.

BBwithBC45

My MO told me to take magnesium oxide, because this one supposedly does not affect the guts.

Trvler, which kind of magnesium do you take? The last few months I have become constipated, so I could use a little help and maybe your kind of magnesium could do the trick.

Trvler

Truthfully, it has changed my life. Traveling was miserable for me. Before I was diagnosed in 2015, I was taking Linzess for it and it worked but I had to take Miralax once a day with it for it to work. When I was in chemo, my group members talked about magnesium and I stopped taking the linzess and the miralax. I think mine is magnesium oxide.

Pamela23

Lewhy & Tpralph--Soy was thought to be a no-no but many studies since 2013 have actually shown it to be beneficial. Here's a link that tells about the studies, specifically for breast cancer patients. They discovered 2 types of estrogen receptors in the body. Estrogen binds to the alpha cell, soy binds to beta.

https://nutritionfacts.org/video/should-women-at-h...

https://nutritionfacts.org/video/who-shouldnt-eat-...

beach2beach

Actually I was always told Magensium Oxide is the most poorly absorbed so it will generally relax the bowels, run through. I currently take Mag citrate and it has the same effect on me, just not as bad (sorry tmi) as the oxide.

TWills

I take Magnesium Glycinate and it hasn't effected me negatively in that way. It has however stopped my hot flashes and joint pain. They are both totally gone so now I'm sleeping better. I hope it lasts. I take 400 mgs a day.

Lewhy

Thanks Pamela, that was a good video. I just bought some endamame hummus and now I can enjoy it!

ThreeC

I'm enjoying all your comments because I can identify with all of you. I have both Thyroid Cancer and Breast Cancer. It doubles the fun. I have worked my way from bags of bottles to daily pill containers in a wallet. I actually have four of them to set my meds up for a month. They come in handy if we are away from home. I leave the "wallet" on a shelf in the kitchen and take the next days container out. If the pills are still in the slots, I didn't take them. My thy-ca pills have to be taken 1st thing in the a.m. with a glass of water. Then an hour later (if I remember) I take my blood pressure meds. Around noon, I take the supplements my onc and endo have me on. Etc. Etc. I have made it to dinner time only to realize I didn't eat breakfast, take my morning or noon meds. I too suffer from what I call "the domino effect". I get up, take my thy-ca hormones. Sit down to watch the news, remember I didn't start the dishwasher the night before. Get up, flip it on and remember I also had clothes in the dryer, I add a few minutes and realize there is dust all over the floor. I get the vacuum out but realize I never got a cup of coffee. I go to get that cup.....you get the idea...no breakfast,the dishes are done, the clothes are dry but forgotten, etc.... Now, my Tamoxifen is the last pill of my day, just before bed. If I'm lucky, it's the only pill left in the daily box. I take it at night to psyc myself into the idea that I can sleep-off some of the SEs. Hot/cold,Hot/cold,Hot/cold....change clothes...Hot/cold,Hot/cold,Hot/cold....change clothes again and start the washer...again... The last month has begun a new SE that is making my short term memory and hot flashes take a back seat. I am "dizzy"! I never know if or when I will be too dizzy to stand up. Anyone else had it as a lovely side effect???? I've visited my Primary Care Dr. he wrote an RX for a med for vertigo and has ordered some tests. If you had/have this, how long did it last, has anything helped??? Any advice???? I have to say though, the Tamoxifen causes me way less issues than the Letrozole they started me on. I really felt like I was being poisoned with it.

*** If you have Thyroid disease or Cancer and take Thyroid Hormones, be careful with using products containing Soy. For many of us it reduces absorption of our Thyroid replacement hormones

Michelle_in_cornland

I take Magnesium oxide and let my body absorb what it needs. It is not the most potent or bioavailable, but it works for me and does not give me any bowel issues. I take 125 to 250mgs most days, especially when achy. You can also soak in epsom salts and use an epsom salt soap, which your body will absorb through the skin. I do not take it the same day that I take the 50,000 units of Vitamin D. That is too much for my system to handle. If I need to take Magnesium, I pair it with 10mgs of Tamoxifen at 8pm, followed by my other 10mgs of Tamoxifen about 11:30pm ish. I think it helps me sleep better as well.

Scrafgal

Threec

I had dizziness my first week of taking T. My onc said that he thinks it is because T is so dehydrating. He recommended that I hydrate well before taking it in the morning, which is my preferred time of day. Once I started drinking 16 to 20 ounce before taking it, I have been fine. No more dizziness has happened since that first week last September.

If you are taking it at night, then you definitely want to hydrate. We lose water while we sleep and everyone is slightly dehydrated in the am.

Right this moment I am hydrating and will take my pill in about an hour!

AmyQ

I've only been on T for four days now so haven't had enough time to notice any side-effects. I did not know about dehydration and T so will make a concerted effort to hydrate.

I'm waiting for Afinitor to be filled and sent to my house. Is anyone on this combo...Tamoxifin and Afinator...if so do you have any advice, special concerns, worries, side-effects, problems etc?

Thank you

Amy

tlfrank

My water consumption has dramatically increased since starting the big T - even during the night I usually drink two glasses of water. It stinks when I have to get up to potty several times though...LOL

Pamela23

Hi Ladies, I ran across this article that sums up the role estrogen plays in our bodies. SO even though tamoxifen sucks, it still allows our natural estrogen to be delivered to other parts of the body which after reading this, I really appreciate!

http://menopause.northwestern.edu/content/how-horm...

Capecodgirl

Pamela23 that is interesting. I have thought about this a lot lately. My oncologist said tamoxifen for 2 years and then an AI. I feel for the reasons in this article I would rather stay on the tamoxifen for the entire time. Thanks for sharing the article.

Cpeachymom

threec- When I first started taking Tamoxifen, I would take it right before bed, I did notice my head was sort of swimming, a little like drinking too much. It doesn’t do that anymore thankfully, so maybe it’s a temporary side effect. And like others have said, hydration is so important now! I drink tons of water now.

runor

Pamela23, the linked article did not mention tamoxifen, at least not that I can see. As I understand it, tamoxifen DOES NOT allow our body to utilize our er/pr. The whole point of tamoxifen is to block hormone uptake by cells. I have not found any information that says tamoxifen is a cancer specific drug, meaning it only blocks cancer cells but not other cells. Side effects are caused by cells that normally get estrogen no longer getting estrogen. They are being blocked. By tamoxifen.

The only exception to this rule seems to be where tamoxifen works on female reproductive organs like a SUPER hormone booster and thus we end up with ovarian or uterine cancers because tamoxifen creates a big dump of hormones into these specific organs.

With hot flashes, night sweats, leg cramps, thinning head hair, an impressive beard growth and periods that stopped instantly, I am pretty sure that the hormonal balance of my body is very much off kilter, as is the whole point of tamoxifen. If I misread where in that article it says tamoxifen allows all your cells to get their usual dose of estrogen, I apologize.

Legomaster225

That was my take on the article as well Runor. Interesting article and I learned a lot but I could not find where it mentioned that only cancer cell receptor were blocked from estrogen attachment. Idid read it fast though. Maybe I missed something.

LiMa66

Aloha everyone. New gal here. Tomorrow is day 1 of my Tamoxifen journey. I've adjusted to the bilateral mastectomy and tissue expander placement but for some reason the idea of taking this little pill really freaks me out. I'm a nurse but all this oncology stuff makes my head spin. I've been reading through this topic and the support and encouragement shown by y'all has been very helpful. So I figured I'd better say hi and jump right in.

Georgia1

Welcome LiMa. I started Tamoxifen on January 2 and so far so good. Wishing you the same minimal side effects that I am experiencing so far.