Bottle 'o Tamoxifen

Pill number one is down the hatch. Thanks for all the tips you have for SE’s. That’s funny how turning toes toward your body gets rid of leg cramps. 😄

Whoever suggested to get a journal and track SE’s was a great tip too. I’m getting one today and will leave it by where I have the pills. My MO warned to watch for the rare signs of blood clots can form in legs. Good Lord. I hope that’s a way different feeling than leg cramping for pain.

I hope everyone has a great weekend and thanks for all the tips and advice. Xox

I love this advice to watch out for blood clots. Never having met a blood clot in real life, I'm not sure I'd recognize one if it happened. Early on I had a weird and incredibly painful bruise come up on my wrist. Didn't hit my wrist on anything. Just all of a sudden it started hurting, an angry bruise appeared next day on the inside of my wrist and next day had leaked through to back side of wrist. Like my arm had been crushed in a vice. So I'm looking at this and thinking, is this a blood clot? I have no clue!

If docs tell you to watch out for blood clots they at least ought to provide a picture, like a Most Wanted poster, so you'll know one when you see it!

when i started tamox i had occasional warm flushes. The brain fog memory stuff carried over from chemo. Been on it since june 2016 and doing quite well. Fequency of warm flushes has gone down and im in menopause.

People not doing well yend to post while those doing fine are gone. Thats the problem is it looks like tons of people have ses when in fact many doing well on these meds are done with this board.

The only way to know is to give it a try for a decent amount of time if you are high risk. I was so scared before chemo reading the issues here, rads, hormonals that i almost said no way. But for me everything has been bearable. No one knows how your body will respond so imo be aware of the ses but don't dwell so much on someone's experience for there is another out there who did fine. Too bad those doing well dont stick around to post to even out this forum better but people are living their lives bearably.

Howdy all! Thought I would just hop on and introduce myself. Have an appointment in 2 weeks to see my Oncologist and her plan is to start me on Tamoxifen. I am reading everyone’s posts just to get an idea of what things I may need to ask.

Thanks to everyone for your tips! It never occurred to me to get a journal to document how I am feeling so that I can keep track of/ evaluate any side effects I may have. Also good to know about the constipation. I hadn’t a gastric band 11 years ago so I Ambien already chronically constipated- I will make sure to talk to my MD about that.

Tracy

Touch wood- no more insomnia since last Friday night.

All good otherwise. Bladder has been a bit touchy- calms down with no alcohol or vitamin C.Skin continues to be less oily.

Hope others are going OK too

So, what are signs of clots to watch for? Swelling? Bruise? I have no idea!

So far Tamox ok. Some minor side effects -- nothing I can't live with. I have had no hot flashes for some reason.

2 years and 2 months, 7 years 10 months to go. Minimum side effects, as MO said at the beginning --  I suppose she made that educated guess from how I reacted to chemo (also min in comparison to many)

I found it interesting for those who have stronger side effects are "complain" about it, then those with minimum s/e are wondering... "is it working?"

I noticed skin/ hair is drier! but this winter is drier, too! MO is tracking my period, according to her, is pretty much regular (every other month). I noticed at the beginning hot flashes was more frequent, now it's more like "warm flushes" once in a while, and seem to come & go with the cycle. My MD friends said it's the hormone changes, so I assume the Tamoxifen is doing it's job.

So I've been hot flashing since Taxol. Like must-rip-off-clothes heat. My dh doesn't understand how I can go outside without a coat in single degree weather, but if I am flushed....

Are tamoxifen flashes more frequent? More serious? Or am I already living the dream and have nothing new to worry about? Time to head to a beach somewhere....

(And how does this work 6 months from now, when I am already in my bathing suit?)

I haven't started yet. Prolly in 2weeks, when I see my MO.

I was counting on my fingers and worked out I'm quarter of the way through my tamoxifen journey, and so far so good. Annual transvaginal ultrasound result was okay, spare tyre round my middle is definitely not okay !

So my question is this...I keep reading that the women on AIs are being changed over to ten years, not five. So has anyone else on tamoxifen had the timeframe lengthened?

Happy to see other women on Tamoxifen doing well too!! I have 4 more years, if I am doing the 5 year plan. I don't think I will be taking it for 10 years, but will see how it goes. One area that I am do a self research on is using Magnesium - oxide and citrate - to minimize joint and body pains. I started taking 125mgs by splitting a 250 mg dose in half, and so far so good. The following is the abstract from the NIH on a study looking at the use of 400mg of Magnesium and breast cancer patients with hot flashes:

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Abstract

Background

We tested if magnesium would diminish bothersome hot flashes in breast cancer patients.

Methods

Breast cancer patients with at least 14 hot flashes a week received magnesium oxide 400 mg for 4 weeks, escalating to 800 mg if needed. Hot flash score (frequency×severity) at baseline was compared to the end of treatment.

Results

Of 29 who enrolled, 25 women completed treatment. The average age was 53.5 years; six African American, the rest Caucasian; eight were on tamoxifen, nine were on aromatase inhibitors, and 14 were on antidepressants. Seventeen patients escalated the magnesium dose. Hot flash frequency/week was reduced from 52.2 (standard error (SE), 13.7) to 27.7 (SE, 5.7), a 41.4% reduction, p=0.02, two-sided paired t test. Hot flash score was reduced from 109.8 (SE, 40.9) to 47.8 (SE, 13.8), a 50.4% reduction, p=0.04. Of 25 patients, 14 (56%) had a >50% reduction in hot flash score, and 19 (76%) had a >25% reduction. Fatigue, sweating, and distress were all significantly reduced. Side effects were minor: two women stopped the drug including one each with headache and nausea, and two women had grade 1 diarrhea. Compliance was excellent, and many patients continued treatment after the trial.

Conclusions

Oral magnesium appears to have helped more than half of the patients and was well tolerated. Side effects and cost ($0.02/tablet) were minimal. A randomized placebo-controlled trial is planned.

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As always, check with your doctor first before taking any medication, supplements, herbs, etc.

what brand do you buy michelle?

Thank you, Michelle. Helpful information for sure.

Quick question: What does your oncologist recommend regarding annual Ob/gyn checkups?

TaRenee, don't be too anxious for menopause to start. The upside is no period. But there are lots of downsides. I was nearly 2 years since last period when I was diagnosed and the doctors STILL don't say I'm in menopause. C'mon guys. It's been 4 years. I think I'm done. :-).

i was told i was in menopause, they did a blood test that showed my levels were way above the normal. I have not had a period since Feb 2017. Don't miss it either. Although I'm only 44. Cancer sucks