Bottle 'o Tamoxifen

JerseyGirl22

ladyb... thanks for the response... I've been taking it late morning... MO says I should try after dinner so that I'll possibly sleep through the bad side effects... Going to try that tonight. Feel tired, but so much better today, of course, haven't taken it yet...

Blownaway

Jersey - my onco has me taking 1/2 morning and 1/2 evening. It helped but still have plenty of s/e's from Tamoxifen.

Blownaway

On the magnesium discussion - just checked my bottle that I take for regularity and it says magnesium oxide. It seems to work 250 mg every night and occasionally need to take another midday. Does magnesium chloride work better?

Trvler

I mix Keihls Creme de Corps with coconut oil and use it all over my body.

AmyfromMI

Blownaway, I take 500 mg of magnesium oxide and it has worked wonders for both the leg cramps and regularity. Even though I recently stopped tamoxifen (was on it almost three years) because of other SEs, I'm continuing with the magnesium. I tried stopping magnesium when I stopped tamoxifen and the constipation came back.

~ Amy

Trvler

Eating more potassium is also supposed to be helpful for leg cramps. When you get a leg cramp, bring your toe in to your body and do not stretch it out. I can stop it instantly.

Scottiemom11

Jersey. . .I did not have the nausea much when I started but did end up with terrible digestive problems. . one extreme to the other. That's why MO referred me to the Gastroenterologist. He put me on two meds to help the symptoms. It does seem like I'm on too many meds just for the Tamoxifen SEs, however, I have to take it.

Scottie

JerseyGirl22

Well... last night was somewhat defining for this Tamoxifen journey... and it's only been a week... I was taking it late morning and within a couple of hours got hit with extreme fatigue, violent diarrhea, and nausea, like a chemo train was hitting me... Friday, I thought I'd make it to do errands and wound up pulling over it hit me so badly... Got in touch with the onc fellow on call and was told to take it at night to maybe sleep through the SEs... Take the Ativan, Zofran and immodium to ward off SEs... Wound up on the floor of the bathroom within 2 hours of taking it, throwing up and fatigued almost to the point of not being able to move... onc fellow said if it was the same or worse to stop taking and call MO on Monday... So frustrating... I feel I should have followed my instincts on this and instead let everyone bully me into it, knowing I have bad SEs for nearly everything they've given me so far... The Herceptin SEs were tolerable compared to this...

Sorry, thanks for being out here and listening...

queenmomcat

Definitely listening sympathetically! Sounds like you do need to stop, especially while you're on Herceptin.

(Heck, I'll go public with this: I don't react strongly to most medications, and I'm on a tamox. vacation after having been on it for five months. Because of fatigue and nausea which developed after several weeks. All standard disclaimers apply--you and I have different diagnoses, different course of treatment.)

KateB79

Aw, JerseyGirl. . . I'm so sorry. I would definitely not take it tonight; have a heart-to-heart with your MO first. Those kinds of SEs are the pits. Sending hugs.

gemini4

JerseyGirl, that sounds just horrid, and I'm so sorry to hear you're having such a rough time! Has your doctor ruled out some sort of flu bug? Hope you feel better very soon

JerseyGirl22

Well, didn't take it last night and feel really good. A bit of fatigue, but I think that's from what meds were doing to my body and wearing me out... Definitely was the meds and not a bug... Husband and kids were sufficiently freaked out and scared by it, too. So I've decided I'm not going to take it, at least until Herceptin is done, and try to get my estradiol # down naturally during that time. Then we'll see. I can take an AI if my estradiol # comes down...

queenmomcat

I expect the fatigue would take a bit to lift. (I'm just grateful my MO did not want me dealing with two treatments--tamoxifen+whatever--at the same time so he could tell which was what SE.)

One_Bad_Boob

For those of you taking melatonin, how much are you taking?

ksusan

20 mg (per naturopathic doc with agreement from MO).

Trvler

Wow, I am taking 3mg. I thought the most you were supposed to take was 5?

ksusan

A definitive level has not yet been determined.

BBwithBC45

I'm taking 3mg of melatonin, too.

Blownaway

I was taking 10 mg melatonin with benedryl nightly but it stopped working so quit. Now Ive learned that benedryl and tamoxifen dont mix. My onco knew i was taking it and never said a word.

lala1

I take 0.3mg of melatonin. My holistic doctor said to start with smallest possible dose and work up. Doses too high cause the opposite effect and give you weird dreams. I take this tiny dose and sleep like a log! On mornings that I have to get up extra early I can't even take it or else I'd sleep through my alarm. So for me, smaller really is better.

ksusan

I was prescribed it for the effects of melatonin itself, not for sleep, so that may be the difference.

lala1

ksusan--If you don't mind me asking, what effects are you trying for with the melatonin? Or maybe you're trying to stop or prevent something? Just curious as to it's benefits (or side effects) outside of it being used for sleep.

Thanks.

ksusan

Both my major cancer docs (MO and ND) say that adequate melatonin levels may help prevent cancer, and they both think 20 mg is a good dose for this. They say that the critical number is your actual melatonin level, not the amount of sleep you get or anything about your sleep architecture.

Buddhahead

Jersey Girl-- First, I'm sorry about your SE from the tamoxifen. I wanted to share that I have been on taxmoxifen since Nov. 2012. I've had SE off and on, but with my latest refill of the Rx, I had symptoms 5x worse. I took this Rx, by manufacturer Teva, for about a week, until I realized what might be causing the increased SE. I stopped the tamoxifen and voila -- SE nearly gone in 3 days. I got my Onc. to write a Rx for a different manufacturer, but was afraid to take it. So, I'm tamoxifen free for about 6 weeks now. I'm feeling so much more mentally clear and less fatigued.

After this incident with the tamoxifen, I called Teva and reported the problem. Their QC dept. was responsive and actually had me FedEx them some pills for them to test. My husband works in the industry and definitely says not all generics are created equal, even with the same main ingredient. I checked on drugs.com and found what fillers are in the various tamoxifen pills. It's interesting, to say the least.

After discussing with my onc., we've decided for me to take a drug holiday for 6 months and have a PET to make sure there's no errant cells lurking. I'm hoping for a negative scan and no more drugs. FYI- I was diagnosed Stage IV from the get go. I'm very grateful.

All the best to you JG, and everyone else here.

JerseyGirl22

Thanks Buddahead.... I never felt at peace taking the Tamoxifen int he first place, so right now, I feel like my body was telling me that, too... We'll see. Still haven't heard from my MO. I called to let them know I'd stopped taking it... I'm on a break from Herceptin for 6 weeks, too, so we'll see how I'm feeling in the next couple of weeks...

One_Bad_Boob

Thanks for the responses. I'm on .5 this week and see how it goes. I had no idea about the benadryl interaction so I switched. Not sleeping...again.

Anonymous

Hi all. Just checking in after my follow up appointment. I asked my oncologist about tumor markers and she said they are not validated for use (and not reliable) for following someone post-surgery. She said they usually use it for Stage IV patients, which I am aware of because of my brother. Apparently some people can have stable or "normal" tumor markers and still have recurrence/metastasis God forbid. Anyway so my blood tests are out and they are totally normal and stable. She was very thorough during the exam yesterday, feeling my other breast and the scar line, and even checking my spine for any unusual pain spots. I was very happy with her as always. Wishing you all good follow-ups going forward!

helplesslyhoping

Hello, ladies!

Started the T last Thursday. So far I feel fine, although I am quite tired. I don't know if this is from the meds or just life (going through a horrible divorce at the moment, just finishing up ten months of active cancer treatment...).

Regardless, I'm wondering if it's too early for SE's to make their appearance. I'm very worried about hot flashes. Those were horrendous during chemo. When will I be in the clear, do you think?

Good luck, all!

hsant

HH, my MO told me that if you do experience side effects, it will happen around 6 weeks after the first dose.

Blownaway

I am considering taking a break from Tamoxifen before my vacation so that I will hopefully feel better and therefore have a good time. Does anyone know how long it takes to get it out of our sysems?