Bottle 'o Tamoxifen

Blownaway

Jojo9999 - I was having trouble taking a deep breath. It's like the air just wouldn't fill my lungs and I would get short of breath while walking or just being busy. Stopped Tamoxifen 5 days ago and have already seen some improvement.

wke

I have added my diagnosis Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-

I also had a bi Mastectomy so don't even have much breast tissue for a recurrence.

My husband is a GP and doesn't understand why they put me on it at all given my low risk.

Melyea

I'm starting this week as well. Worried about the hot flashes! Good luck

Moderators

Dear Melyea,

Welcome to the community. We are glad that you reached out. Good luck with starting the tamoxifen. Keep us posted on how things go for you. We hope to see you around the boards. The Mods

Paxton29

I also had a BMX and also wondered how/if Tamoxifen would work. I assume there are rogue breast cells that escaped the surgeon and even if there aren't many the Tamoxifen should still work.

Moderators

Hello, everyone!

Our team has been working on putting together Member Tips lists for different aspects of bc and it's treatments and after-effects. Since you, our members, are our resident experts, we'd love your feedback on some of these, to see if we've left anything out or have included something that might not work for a lot of people. If you could look over our Member Tips on Tamoxifen and give us your valuable feedback, we would be so appreciative! Sorry for the long post, we wanted to get this out ASAP and didn't have a chance to convert to a pdf yet. Thanks so much for your help, and as always, we appreciate each and every one of you!

• Community Member tips for managing Tamoxifen side effects. Always consult with your health care provider before trying any supplements or medications!

In general:

• Take tamoxifen just before bed

• Keep moving! Exercise in every form.

Explore meditation

Consider acupuncture

• Consult with a holistic/naturalist doctor

Consider changing the manufacturer/brand of your Tamoxifen if you experience side effects

• Hot flashes and night sweats:

• Effexor (venlafaxine)

• Regular, ongoing exercise

• Magnesium glycinate

• iCool (soy-free, genistein)

• Peridin-C

• Acupuncture

Catapres (Generic Name(S): Clonidine Hcl - a blood pressure med that also can help hot flashes.

• Weight gain:

• Diet (reduce calories/lower carbs), limit salt, alcohol, saturated fats

• Get moving: Exercise at least four times a week.

• Aching joints and leg cramps:

• Ibuprofen, at least short term.

• Glucosamine chondroitin

• Exercise and stretching

• Yoga

• Turmeric (Turmeric Supreme, GAIA brand) and ginger

• magnesium

• Magnesium Citrate 100mg twice a day

• Magnesium Glycinate

• Vitamin D

• Massage foam roller

• Fatigue:

• Massages

• Daily meditation

• Jogging/exercising

• Daily multi-vitamin

• Calcium and magnesium glycinate or magnesium citrate

• Insomnia:

• Exercising during the day

• Reading a good book at night

• Melatonin

• Ativan

• Nausea:

• Take Tamoxifen before bed

• Probiotics

• Ginger

• Memory problems:

• B Complex

• Fish oil

• Blood clots:

• Fish oil

• Baby Aspirin

• Constipation:

• Magnesium chloride (e,g,SloMag)

• Increase fiber, exercise and drink tons of water

• Herbal tea called "Smooth Move" by Traditional Medicinals

• Stool softener

• Hair loss, nail strength:

• Biotin supplement

• Remove nail polish with a non-acetone-based remover

• Massage cuticle cream into the nail area

• Brain fog:

• B Complex

• Fish Oil

• Mood:

• Magnesium glycinate

• Effexor

Reckless

For leg cramps: NP in my MO office suggested that I may not be drinking enough water. She also said that some patients take coconut water to help with this. I have not tested it myself though, so cant't tell for sure if it helps

Moderators

Thank you, Reckless!

Trvler

I learned how to stop leg cramps in their tracks when I was pregnant. Curl your foot towards your body (not back as seems instinctive). It stops 99% of my leg cramps immediately.

gemini4

Hi Moderators --

Thanks for compiling that list.

I don't think iCool should be on the list. I know there's one member here whose doctor recommends it, but I know my MO would never allow me to take it because genistein is considered a phytoestrogen. I believe other members have said their MOs don't feel there's enough evidence that it's safe for ER+. Here's a link with some info https://en.wikipedia.org/wiki/Genistein#Estrogen_r...

I haven't personally tried gabapentin for hot flash relief, but my MO did recommend it, and I know others here take it.

Thanks again!

Moderators

Thanks for that info, Gemini!

ksusan

Different magnesium formulations work for different people.

I have read no scientific reasons for taking Tamoxifen at night. Many take it in the morning.

ICool is prohibited by some MOs.

keepwalking

I agree that it seems that different times of day work better for different people for taking the tamoxifen. A good recommendation might be to experiment with different times if you experience difficulties, according to whether you have trouble with nausea or with insomnia, night sweats, etc. I find that a few hours before bedtime is best for me.

I would also add to the list on memory problems that doing mentally challenging things helps - for example, take a course or learn something new, read books that make you think, do puzzles.

Thanks for your efforts on this, moderators!

buttaflydiva

Thanks for the awesome list. im starting tomorrow.

Scottiemom11

wke. . .as always follow your MO instructions. One of many articles on the benefits of green tea. . .it is definitely helping me, along with all my other supps.

Green Tea and Tamoxifen

Scottie

Mm68

One other thing I would add to the list is vision issues. Great list

lala1

Scottiemom11--Do you know if it matters what type of green tea is best? Or is there a really good clean brand? I'd like to start drinking it but i want to be sure I'm drinking a good one!

Scottiemom11

lala. . .I prefer Twinings, but loose green tea may be better. Tea bags are easier. They say 3 cups a day and it has helped my joint pain. I see MO on Friday so will discuss supps again.

Scottie

gardengypsy

Organic Green Tea

MJS1266

Scottiemom,  Thanks for sharing, very interesting data.  I'm going to ask my MO whom I will see next week.  I'll share what she has to say.  Best, MJS

Carlsoda

I have always drank a couple of cups of green tea a day and it didn't work for me

I stopped drinking green tea during radiation and started up again, this time I am adding matcha since it is stronger!

exercise_guru

Hi ladies can I ask a quick question. I have to take Tamoxifen close to bed. Does anyone know if I can take Melatonin at the same time.

NicoleIsASurvivor

I'm also having major side effects from tamoxifen. I have been taking it for a little over a month...I experience extreme fatigue and can sleep forever it seems...and feel very confused...best way I can describe it. Counting money wrong, when I normally have no trouble..remembering simple things...and instead of hot flashes. I stay cold with very few hot flashes. Im going thru menopause because I've had a hysterectomy...Called my Onc and nurse nav...waiting on Onc to call me bk...nurse nav said that I definitely need to switch to something else. I just want to have one good day...so tired of feeling sick and being in treatment. God bless us all and thank u for listening.

Trvler

I take 9 mg of melatonin at night. I have read melatonin boosts efficacy of Tamoxifen but I don't know for sure.

Are headaches a SE of tamoxifen? I have had more headaches than usual lately.

Jumpship

I have had my ups and downs with side effects from Tamoxifen. I have found some things that lessen, but not eliminate, my pains. I just wanted to encourage anyone who is struggling with the side effects to keep on trying to find what might help. There were days I wanted to cry from the side effects and I thought "4% survival improvement....is it worth it?" But after I'd drive the kids to school I'd rethink that and want to stick around for a while. I have tried different supplements and alternative treatments and diets. What's true for me might not be true for you. I just wanted to encourage anyone who was like me in February and just thought, "I walk like an 80 year old. I can't see well. I don't sleep well. I. can't. do. this.anymore." to keep trying the next thing. If one thing doesn't work maybe another thing will. We can do this!

etnasgrl

I've been on Tamoxifen since February and overall, I am doing quite well on it.
My only two complaints are trouble staying asleep and night sweats. I will fall asleep just fine, but then wake up every single hour until my alarm goes off in the morning. Very frustrating!
And the night sweats?? Wow!! At least once or twice a night, every night, I will be drenched in sweat. I keep a towel by the bed and some clean PJ's to change into. I also sleep on a towel so as not to get the sheets all wet.
I guess if these are the only two side effects that I have to deal with, I'm lucky....but they sure can be annoying!

ksusan

Tomorrow is my 365th Tamoxifen.

I notice that if my simple carb intake is high, I have more frequent hot flashes.

gardengypsy

ksusan - Good info. A former "carboholic", I found that the less I eat, the less I crave them.

labelle

Maybe this will help someone. I've experienced some joint/muscle aches and pains while on Tamoxifen. Not severe (I also use fish oil and turmeric) but enough to make me feel stiffer and older than I think I should most days.

I started taking Claratin (generic version/loratadine tablets) daily about 10 days ago for the usual reasons-itchy eyes, runny nose, scratchy throat-and amazingly enough I noticed just a couple days ago that my misc. aches and pains have almost completely stopped. I think I might stay on the loratadine even after allergy season has ended. I know I've read about Claratin helping those undergoing various therapies. Not sure if it has been mentioned in conjunction with Tamoxifen aches and pains, but this thread is way too long to reread from beginning to end, so I'm throwing it out here.

gardengypsy

labelle~ I've read about Claritin in connection with helping side effects.

Question is, do we want to take this long term?