Bottle 'o Tamoxifen

Professor50

In terms of the cold and hot flashes, I have noticed too that mine are worse when it is cold. I think it is because of wearing warmer clothes and using more blankets when it is cold. So, when a hot flash hits a person is just in the worst possible situation (all snuggled up in clothes and blankets).

Trvler

Yes, I think that may be true, Professor. But I also noticed fewer flashes during the daytime when being cold wasn't an issue.

ORgal

I've been thinking about the nighttime light issue and melatonin, and have seen people (here and other boards) suggest wearing a mask at night. But, I wonder, is that enough? Is it just the 'eyes' that shouldn't be exposed to light for the melatonin to work correctly, or is it our whole bodies? Yes, we usually have blankets that cover most of our body - except the foot that sticks out to regulate the hot flashes! I've just wondered about this and am curious about your thoughts.

Professor50

Hi ORgal, my understanding from teaching about sleep in some of my classes: it really is the eyes that matter. The light coming into our eyes has a huge role in regulating neurotransmitters and hormones. Crazy huh? I'm pretty sure that's the case. (It's why people who are completely blind sometimes have serious issues with insomnia).

Trvler

Yes, I agree. It's just the eyes, most likely. I also have been wondering what, if any, impact that OTC melatonin supplements have on this equation.

gremx003

i am taking Tamoxifen since January 2016. Hot flashes every 10 minutes, bed soaking wet everynight. They now put me on 600 mg of gabapentin to minimize the night sweats. Also issues with weight gain

notdoneliving

Sjacobs46 Thanks for your thoughts. I know it's up to me. This is one of those times I hate being an adult. I want to lie on the couch with my head in my mother's lap. Must figure out how to deal.

superius

So I asked my friend, who's an endocrinologist, if Tamoxifen would make the BP & blood sugar go up. & she said that loss of female hormones will result in weight gain, due to change in metabolism, loss of muscle and increase fat. That's why. I think she also said the hormones regulate body temp.

KateB79

The thing with light at night is just about the eyes. I wear a sleep mask but find myself pulling it off in the night. . . I guess it's good that the night sweats wake me up, so I can put the mask back on. LMAO. . . Tamoxifen!

So far, that's my only SE. And, while I'd pay a lot of money for a night of uninterrupted sleep, I'll take waking up at 3:30 and 5:30 (it's like clockwork) over some of the alternatives.

LynnBM

Hi all, I am completing radiation next week and will start Tamo right after. I had asked earlier if anyone split the dosage in half to minimalize se? I know the dosage he has me on is 20 mg, I was thinking if I took half in the morning and half at night that maybe I won't encounter as many se, maybe that's just wishful thinking. Thanks

dtad

superius....so glad you mentioned speaking with an endocrinologist. IMO they should be part of our team. Many of us are treated with anti hormones but most oncologists are not experts on hormones. Also I completely agree that the lack of estrogen causes all these side effects. We are given these anti hormones and then many times not even tested to see if they are working! We have a long way to go....

dtad

gremx123......dont want to frustrate you but gabapentin is also known to cause weight gain. Just don't get why we are told to lose weight and then given drugs that make it so difficult. Again, we have a long way to go....

NormaJean65

Good Morning Ladies, I wanted to jump in here & ask a question to the older ladies that have been on Tamo more than 5 yrs. if any are taking or experiencing sufficient hair loss. Every time I run the sweeper I have to clean off the beater bar of a small handful of MY hair. Does anyone take the herb Evening Primrose Oil without estrogen? I'm so upset that by the time I finish the ten yrs. I will be bald again. :-(

ksusan

There may be people who split the dose, but I'm not aware of it. Most get 20 mg and take it morning or evening. I haven't seen any study suggesting that one or the other is better. I take it in the morning because I have an evening supplement that makes me queasy so I try to reduce what I take with it.

lala1

My doctor said he doesn't recommend splitting Tamoxifen. The school of thought is that is reduces the efficacy. There are lots of meds that change how that work if you split them. Ask your doctor if it's okay.

Professor50

Actually my MO told me specifically that splitting the dose is fine. That used to be the standard of treatment. However, the problem was that people would be much more likely to forget a dose. She said that studies showed one dose of 20 was as good as 2 of 10 and that is why the standard switched--so that people wouldn't be as likely to forget one of the pills. .

LynnBM

Thanks all I did ask my doctor and he said he doesn't believe that it impacts the SE. He would prefer that I not split it u

ayr1016

I am starting my 3rd month of Tamoxifen. At my appointment last Friday, my MO mentioned that being on Tamoxifen for only 5 years is becoming the old school of thought and that 10 years is now where we are headed. She also said that it takes about 3 months for Tamoxifen to fully leave your system. Just thought that was interesting. I keep hearing 5 years.

Peachy2

My MO also said that ten years is the new standard, based on the patients whom they've followed. Because I was pre-menopausal at diagnosis, and will be post-menopausal before too long, I asked if AIs are also ten years. She said that the data is not yet back on extending the time for AI.

hsant

I was prescribed Tamoxifen for ten years

KateB79

Ten years here, too, unless we move to ovarian suppression + AI at five.

Ten years of endocrine therapy is the new standard.

Anonymous

I was also told 10 years, whether AI or Tamoxifen. And a nurse told me that if the side effects are manageable, why stop at 10 years?

Jen987

NormaJean 65, I have extreme hair loss also. With the amount of hair I lose daily I'm surprised there's any left on my head. Oh the joys of Tamoxifen.

Blownaway

My doc had me split the dosage between morning / evening to help with s/e's and it did help somewhat. I still have thinning hair, weight gain, shooting pains to legs, ankles, feet, arms, wrists, hands, headaches that come/go all the time, hot flashes, muscle weakness, joint pain/weakness (knees, ankles, wrists), constipation, extremely dry skin, no sexual desire, fatigue....I could go on but would hate to scare the newbies......

I intend to ask if I can take a Tamo break for vacation so that I will feel good and if so, how long in advance should I stop taking it to alleviate symptoms/side effects. Hope its not the 3 months that someone just suggested above!

superius

dtad: I have quite a few people in my "unofficial team": Besides endocrinologist, I have 2 surgeons, 1 ob/gyn, a Dosimetrist, and 3 oncology researchers (2 of them drug developers - when i did a search of their names, they came up with articles related to Herceptin & BRCA) :O & these are just people in my church choir....

I forgot to ask my MO couple weeks ago if we are on 5 or 10 yrs. but "my people" told me to do 10. Yup, then we hit menopause yrs. Joy!

ayr1016

Blownaway: I think my MO meant that it takes that long to 100% fully leave the system, but I bet SE would lessen way quicker than that.

Kimmer33

i was told the grade of your tumor can determine length of time on tamox, i am grade 1 and 5 years is recommended for me. My tumor was very lazy and slow. The pharmacist who gave me my tamox teach said that if you make it to 5 years without a recurrence on tamox with a grade 1 diagnosis, that basically gets you off tamox at that point.

bikefam

I have Grade 1 DCIS and my MO said 5 years. This is the first I've heard of going longer. I will certainly ask him next time I see him, just to be sure. My SE are mild (just hot flashes), so if it helps keep the cancer away, I say go for it.

Blownaway

I saw my MO yesterday. There will be no Tamo break for vacation. She still says 5 years, not 10. I am to retry Effexor at increasingly higher dosages for hot flashes. She asked me why I quit taking it and I know I had s/e's from it but With my memory problems, I don't remember what they were.

Peachy2

More fun to add to the nighttime hot flashes! I had a terrible time with cramps in my ankles and feet last night when I was trying to get to sleep. I often have cramps in my toes or arches of my feet when it's cold, but this was completely different, and with almost three months on Tamoxifen the first time it's happened. Anyone else experience this?