Bottle 'o Tamoxifen

stage1

Labelle, please share your experience in PT for rectocel, I am concerned, and glad you shared that diagnosis. Something for all of us to watch out for. Thank yo

gardengypsy

Wenrisa~

I am just starting to tackle the Tamoxifen SEs, and this is what I've gleaned from reading and rereading this thread so far:

Magnesium Glycinate ~ For hotflashes and muscle cramps.

Magnesium Chloride ~ For constipation.

Turmeric (with Capsicum) ~ For leg cramps, inflammation.

Ginger ~ For Inflammation, nausea.

Probiotics ~ For GI problems.

Biotin ~ For hair, skin and nails.

I-Cool (genistein) ~ For hot flashes

Peridin-C (bioflavinoides) - For hot flashes

Melatonin ~ For sleep.

B Complex ~ For brain fo

Fish Oil - For brain fog

lala1

gardengypsy---Good job putting all this in an organized form. The only thing I will add is that the Peridin-C was suggested for hot flashes. You can find it on Amazon

carojo95

Wenrisa, I've been on Tamox since March with very few SE. Maybe a little headachy and stomach pain on eating (that went away) but no hot flashes or weight problems. I take mine in the morning since that is a very routine time for me. Coffee and Tamox - breakfast of champions!

gardengypsy

Got it!

Wenrisa

gardengypsy -

Thank you so much! That is really helpful!!! So much appreciated! I've been taking the tamoxifen for about 5 or 6 days now and don't think I have any side effects yet but I really want to be prepared

Scottiemom11

Just added magnesium glycinate to my regime. Will still take the mag citrate as well. Hopin for less HFs.

Scottie

gardengypsy

Scottie~

I am starting the Glycinate next week. I am trying to add one supplement at a time for the hot flashes. Let's compare notes soon.

Mm68

Blownaway, I started takeng 5000 mg of biotin and have cut back to every other day-hair growing way too fast. Hope it helps you

ChelleG

hello ladies, I was wondering if you could share some stories with me. I have been on tamoxifen for 9 months. I have metastic breast cancer with extensive bone mets. What are some of the side effects that you experience? Any input would be appreciated. Thank you!!!

Chelle

NormaJean65

Haven't been here in a while b/c for some reason I no longer get the emails from my favorite lists. Soooo, now I have a question. I just read an article about Melatonin enhancing Tamoxifen effects. Is there anyone here taking Melatonin & how many mg.? I have been on Tamoxifen for 5 1/2 yrs. and starting to have multiple issues.

Hope everyone is enjoying summer. Just got back from Branson, MO but it just about did me in with a grandson & 2 dogs. Don't know what I would have done w/o DH.

Thank you for any help you can send my way about the melatonin.

Scottiemom11

NormaJean. . .I take 5mg of melatonin at night. I'm thinking about a 10mg extended release tablet. I need to check that with MO in August.

Gardengypsy. . .Fingers crossed that it works.

Scottie

gardengypsy

NormaJean

I am taking 20 mg of Melatonin a night! I take it for sleep. My MO and naturopath were fine with it, but I've never heard that it enhances T's effect.

sensitivehrt

Hi ladies,

Popping in here after meeting with the MO for the first time today, and they are recommending Tamoxifen.  Was told it would be for 10 years.  My ER+ was 8 %.  MO will send out for Oncotype if I'm agreeable to considering chemo.  Right now, still trying to digest being on a medication for 10 years.  Was told I have a 10%-15% chance of reoccurrence without medication and it would drop to 5-7% with medication.  Anyone receive similar stats.

My tumor was small 7 mm, grade 2 Stage 1

rleepac

You could try it but with only 8% if it doesn't work out I wouldn't feel bad about stopping it. I'm 95% and it's a true struggle to decide if the side effects are worth the benefit

NormaJean65

Thanks Scottiemom & gardengypsy. I have an appt. w/ my onco a week from this coming Monday. I will take the article I printed off & ask him. At least taking melatonin even just for sleep would be better than the Klonopin. Need to get my list ready for him of all the issues. Usually I go in & say "I'm just fine" b/c up until now the se's were mild & never lasted more than a couple of days. Sigh!! After almost 6yrs. I am getting really tired of all of it.

gardengypsy

You've made it this far! Stay strong, NormaJean!

Joy_1

Good morning, I've been on tamoxifen for a year now and have really had no side effects. Sleep okay, no hair loss or weight gain (thank goodness). My MO said that the worst side effect he sees in most women is that they get "feisty". A bit cranky and say what is on our minds is what he seems to mean.

I'm sort of the 'say what's on my mind' type anyway, I can't tell it's gotten any worse.

If this stuff can really reduce our chances then I am all for taking 5 years, or even 10 if they say so.
Take care and God bless, Joy

El_Tigre

NormaJean - My naturopath has me on 20mg of Melatonin every night. I go off of this in July to help my body maintain produces it's own melatonin. I did read it enhances it and in July when I am off of it I plan to sleep with an eye mask. They "say" even a little light while you sleep could hinder your melatonin production (in rats/mice per the article http://www.aacr.org/Newsroom/Pages/News-Release-Detail.aspx?ItemID=569#.V2K15bsrLcs), but really who knows LOL

gardengypsy

lala1

Per your recommendation, I have bought Magnesium Glycimate for the hot flashes and Turmeric Supreme "Extra Strength."

How much are you taking of each?

My Gaia Tumeric Supreme has 3 different types/dosages of turmeric (plus the pepper) in each capsule. Is yours the same?

gardengupsy

gardengypsy

El Tigre

I have been on the same dosage and it's working very well.

How long have you been on it?

It was useful for me to hear that your naturopath recommended going off so that your body can remember how to make its own.

superius

I haven't have any hot flashes for a few days... so weird. Has anyone have that experience? that it stops?

Momof4gramof3

lala1 - I too wanted to ask about the turmeric and ginger supplements you take. I've heard that turmeric, in particular, has to be in a preparation that makes it bioavailable - that it's not readily absorbed. I understand that pepper is important but is there a pill or powder or something that puts it all together to make it work? I would really love to have something to help with the joint pain.

gardengypsy - Where do you get the Turmeric Supreme? I'd be interested to know more about that.

I started on Magnesium Citrate 100mg twice a day and immediately my leg cramps at night went away! I was amazed. Now if it would only help with the constipation. Perhaps I just need to take more. Biotin has also recently been added to my complement of pills to try to combat my hair falling out. I still don't understand why all these side effects didn't start until I'd been on Tamox for 18 months. It seems strange.

Joy - I'm with you. Despite all the side effects ( I have brain "fog" rather than "feisty" in addition to many others) if it decreases my chances of a recurrence, then I'll take as long as they tell me too.

ksusan

Momof4gramof3, I was told to take mag citrate "to the limit of bowel tolerance." When I asked what that meant, the answer was, "Take it until your bowels are too loose, then take slightly less than that."

ladyb1234

I was coming on to post about leg cramps getting worse. Great timing o the topic being discussed. I will try Magnesium Citrate 100mg twice a day and see if this helps my leg cramps at night. Any other suggestions? Do I need to check with my onc or naturopathic onc before starting?

I have been on Tamoxifen for about a year and it is interesting how new SEs surface.

Momof4gramof3

ksusan - Thank you so much for passing your doctor's advice to me ( sorry, pun intended. :-) I will definitely increase the dose gradually until I get some consistent relief.

ladyb1234 - I had discussed magnesium with my MO but she wanted to check my level before I started taking any. It was totally normal but she said that taking the supplement might make the difference in the leg cramps. So far, so good. Guess I'll just increase it to get the added bonus of getting the constipation problem in check too. A 2fer!

Joy_1

Hi,

So, I said I didn't have any side effects yet, but everyone is mentioning leg cramps. I have been having them at night a lot recently, but didn't connect them with taking tamoxifen. I might try the magnesium citrate. They wake me up during the night. Thanks

Trvler

Tip for leg cramps: Your instinct when you get one is to stretch your toe away from your body but that makes it worse. Extend your toe up towards your body to stop them. I learned this when I was pregnant. I don't get leg cramps. I get mostly a cramp in my arm.

Scottiemom11

I'm now taking 200mg mag citrate in the morning and 200mg mag glycinate in the evening, as well as turmeric, ginger, biotin, probiotics and calcium. The mag glycinate seems to have reduced my HFs at night. The mag citrate works on the legs cramps. I note, however, if I don't exercise daily, at least a long walk, I still get the leg cramps.

Scottie

rickster

**Jumping off the T-Train after 7 1/2 years** (My apologies if this has been addressed, as I have not been on here in years . . . )

I have been on Tamoxifen for 7 1/2 years, and for the last several years have been unable to sleep for more than a half hour on one side (due to pain in hips and shoulders), so spend the entire night flipping back and forth, trying to get comfortable. I have also suffered from leg cramps, weight gain, belly fat, extensive hair loss and foggy brain). This last year, I have had blood in my urine, however, CAT scan and cystoscopy show no apparent cause. I have also had frequent yeast infections. I decided to take a break rom the tamoxifen and immediately saw a decrease in pain at night . . . Not totally pain free every night, but have slept for 4 - 6 hours with no pain (about 7 out of 10 nights), which I have not done in years! My concerns are due to likelihood of pain if I start up AI's for the next 2 - 3 years (I originally was not put on them due to pain issues in my back and hips when I first came off radiation). Has anyone had a similar experience (pain, blood in urine, etc., after this long on the drug), or does anyone have advice about outright stopping Tamoxifen after 7 1/2 years, versus sticking it out for the full, recommended ten years? Thanks in advance and best wishes to you all on your Tamoxifen journeys!