Bottle 'o Tamoxifen

ayr1016

El_Tigre Yes, I am taking Tamoxifen and am getting monthly Lupron injections. I am scheduled tomorrow for another one.

MJS1266

Noni, My experience is similar to yours, I've been on Tamoxifen nine months with one month off for surgery.  I get warm flashes usually after walking quickly outside or coming into a warmer room from a cooler location.  It is not significantly worse than when I was just perimenopausal.  Good Luck with your treatment.  MJS

StillWater

I don't know if your concerns have been adddressed, I don't have the time right now to scroll through all of these pages ... However, I've been taking Tamoxifen for about 1 1/2 years. Initially I had no hot flashy during the daytime but extreme night sweats. Had to sleep on a towel. Those are gone but I get pretty bad hot flashes day and night. About 2 months ago I developed these excrutiating headaches, right where my reading glasses hit my nose and in the sinus area. I went to an ENT thinking it might be a sinus situation. Also low bloodsugar in the PM seemed to be a trigger. 400mg of Ibuprofen did not work, later I tried 600mg (3 tabs!) worked ok but that's not doable for longer, of course. I had almost talked myself into a brain tumor and the ENT ordered an MRI of the sinus and brain. Came back clear, no sinus issues and no cancer. So I ruled out one thing after another (among it Glaucoma eye drops) and figured it had to be from dropping estrogen levels. I had read that hormonal headaches do not respond to OTC pain meds. No periods anymore but FSH, LH still too high to switch to an AI. My solution was Botox. I hadn't gone in a while and when I went (20 units/forehead) the headaches went away the next day. It is used for migraine my onco said. So once in a while I get those headaches but just take 600 mg of Ibuprofen to take the worst pain away, but the problem seems to be handled and its been 3 months since Botox injection.

Giazuc

Hi guys, anyone stop or not take Tamoxifen? I'd love to hear long term stories, like 5, 10 or more years out. I've been taking it for 2 years and can't take the constipation issues (chronic anal fissure), the thickened lining and ovarian cysts. And now I'm getting major night sweats and hot flashes...I wish I could just quit it but I'm afraid of recurrence

Thanks,

Gia

hsant

StillWater, did your insurance cover the Botox shots?

StillWater

I went to a med spa and didn't really worry about the cost. With Botox and Dysport always offering discounts the cost isn't that bad around here. I am not sure how the insurance coverage would work and haven't researched that further. At the time I had no idea that it would affect my head aches so dramatically.

AmyfromMI

I would check into your insurance covering the Botox because it was a treatment option suggested by my PCP when I was suffering from migraine like cluster headaches while on tamoxifen.

momwriter

Giazuc,

re:constipation: a homeopath recommends this and it works.

Take as much magnesium as it takes to become regular.

I had been just taking 1-2 200mg every day or two, and it didn't help. But I upped it- at first -1200-1400/day and I'm regular for the first time in two years. I've also gone mainly gluten free. I've been decreasing the amount of magnesium as my body is getting more used to being regular. - (And it's easy to tell if you have too much -sorry TMI- green or runny).

I've been on tamox almost 3 years and I know that I'm going to probably be on these things for 10 years. I'm achier than I'd normally be, but when I eat well, do yoga, and exercise, I feel pretty good. Too much sugar makes me feel awful. Being regular is a game changer.

Good luck!

StillWater

Apparently is may only be covered if you have tried several migraine meds and then involves a lot of paperwork. Also, insurance companies do not reimburse plastic surgeons for botox but it's different if a neurologist does it (which is stupid because botox is done best by people that do that all day long. The injector is the "artist" to make it look good. Like raising eyebrows but not evil looking and still have mobility, not a frozen face. So for me 20 units are enough. At $9/unit with discount I pay around $150. It's been 4 month, still good. Usually every 6 months. The frown muscles also atrophy, so you do not need more and more units to get the same effect. You could start with 10 if you don't need it cosmetically and see what effect you get. It isn't painful, you can numb the forehead with ice or use a gel.

starsarestars

Hi all,

here's a question--- regarding ovulation and Tamoxifen--- and birth control----

Since mid way through chemo I lost my period, I just turned 40. I assumed that was the chemopause. I haven't got it back yet, been on tamoxifen for 2 months now. My oncologist told me on Friday that I could still get my ovulation back, but tamoxifen suppresses periods. So I could still ovulate but not get a period?? So there is a chance I could get pregnant while taking Tamoxifen? I know getting prego is very bad on Tamoxifen- because of the drugs on the baby and we are taking tamoxifen to suppress estrogen. My oncologist also told me it was ok to get an iud- even the progesterone iud! My cancer was Er, Pr, Her2 positive! This sounds crazy to me??!

What is anyone else doing or what have you heard from your doctors?

Thanks!!

rleepac

What formulation of magnesium are you taking for regularity

bernr1309

This is my 3rd week, but nothing out of the ordinary yet.

VickiRides

Starsarestars - I had my hormal IUD (Mirena) replaced with a non-hormal IUD soon after I was diagnosed. My cancer was 100% ER/PR+. At first my MO said it wasn't necessary to switch but after I did more research he agreed that it was a good idea. I started chemo in August and my last period was in September. My MO told me periods may or may not come back on Tamoxifen. I've only been on Tamoxifen for 5 weeks.

superius

Starsarestars - My MO said no period doesn't mean the eggs not viable. I turned 43 a month ago.

lala1

rleepac---My doc told me the same about magnesium. I take 200mg of magnesium glycinate and 200mg of magnesium chloride a day. Supposedly the glycinate helps more with muscle cramps and joint pain and the chloride helps more with regularity. All I know is that between the two, I am regular and I have very little joint/muscle pain. I'm with momwriter.....between exercise and yoga and my supplements I feel pretty darn good and plan to be on Tamoxifen for another couple of years before switching to an AI or I may just stay on Tamoxifen all 10 (+) years (my BS is all for the latter.).

ORgal

Lala1,

Where do you get your magnesium glycinate? I can't seem to find it anywhere.

Scottiemom11

Adding to my stable of complementary/holistic treaments. Got this at Sam's club. I already have several essential oils and have been seriously considering diffusers on Amazon. Anything that reduces my stress levels can only help the SEs.

Scottie

lala1

I buy magnesium glycinate 400 from either Amazon if I have an order for other stuff or Vitamin Shoppe if I don't have time to wait on a shipment. I have seen it at Walmart a couple of times.

Amazon.com: KAL - Magnesium Glycinate 400, 180 tablets: Health & Personal Care

mairew

Hi Melly,

I have the same issue as you. I am most definitely premenopausal and just started on tamox. I discussed with my Onco and she said talk to Gyno. The two main options presented to me were getting my tubes tied (or getting my partners tubes tied ... yeah hes not doing that), or copper IUD. The barrier method (condom with spermicidal foam) was the least preferred method due to probability of failure. This sucks.

El_Tigre

Scottiemom1 - hey have you purchased one yet? how do you like that diffuser?? I was looking into getting one

ORgal

Ahh, what's happening to my nails? Is this the Tamoxifen? I've been on it 10 months now. My nails keep tearing and chipping, even my toenails have started. I didn't take chemo so didn't deal with it then. Any advice on how to deal with this? They get torn down pretty low.

I know biotin (a B vitamin) is supposed to help with hair and nails, but I've been taking that since before BC.

Thanks lala for the info on the magnesium glycinate, I ordered some. I'm hoping it's better than the oxide I've been taking.

edwsmom

I've been finished with my treatments for 1 month now and started tamoxifen.

I feel strange....kind of aimless. It's so strange to not have appointments every week (though I'm so grateful not to right now) and to just be proceeding with life as it was before the diagnosis. I feel like I should be worrying about the cancer. I should be doing more for prevention.

I'm going to a wellness seminar for cancer patients in a couple weeks to go over diet, exercise, etc. for after treatment ends, but after being beat up and overwhelmed for months, it's so strange to be inserted back into normal life like nothing happened.

Scottiemom11

El Tigre . . .the diffuser works great. Amazon has some in the same price range, but this one came with a 15ml bottle of essential oil as well. I look forward to experimenting with different combos. I have 6 different essential oils so far.

ORGal. . .my nails are the same. I have always had thick, long and nearly unbreakable nails. Now they are like tissue paper. I'm also on Biotin. My hair is growing like crazy and much thicker, but it does nothing for my nails. A coworker suggested Healthy Hoof cream. I've been thinking about that from Amazon as well.

Got my ginger supp today and have added that to the tumeric. Hoping to kick the HFs to the curb.

Scottie

Live4them

Hello Ladies , new to this Tamoxifen stuff.. My Oncologist wants me to take Effexor for hot flashes . I was on it but really don't want to continue , don't like the feeling and here getting off is a nightmare . I want to try a more natural approach .. What have you guys found to help hot flashes ? And do they normally subside after awhile or is this something I get to look forward to for 5 years ... I can't sleep 😩 Any advice will be greatly appreciated

dtad

Hi everyone. There are a few supplements you can take for hot flashes but please check with your doc first....I have tried ICOOL which I get on Amazon and Remizen which I get on its website. I would definitely try them before going on Effexor. Im not a fan of taking one medication to combat another medications SE. Good luck to all....

Trvler

Supposedly magnesium helps with hot flashes. I take it but I don't know if my hot flashes would be worse with out it o not.

lala1

I take iCool for my HF along with Peridin-C both of which I get from Amazon. I no longer get "hot" flashes but more like warm flushes. I'll get a couple during the day and maybe 3 or 4 at night that just slightly wake me up. Before I started these 2 supplements I would HF about a dozen times a day. I also take magnesium glycinate which is supposed to help as well. My MO suggested the iCool, my holistic doctor suggested the Peridin-C and my BS suggested the magnesium.

ksusan

I think magnesium helps. There was a Japanese study showing that abdominal breathing can help as well.

Live4them

thank you ladies !! Just left a message with my doctor to have his nurse or him call me . I am going to run all these things by him , but somethings got to give , I'm miserable and live in South Florida and its so hot already in May and it's messing with my sleep . When my sleep is compromised , my mood and migraines are not fun .. Ksusan I wish I could even think about breathing when I'm getting them . My heart starts racing and I feel nauseous . I feel it's almost am hourly event

TinyDancer5

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I have been on the Watson brand of Tamoxifen sine January, and when I refilled the script last week I was given the Teva brand. Are there any side effects to look out for on the Teva pills?