Bottle 'o Tamoxifen

Haven’t been on in a while and sorry to go pages back to the PR discussion, but I am only PR positive (and slightly at that) and still I am forced on hormonal meds. My onc gives me some half assed explanation that seems very much like “we just don’t know and so to avoid getting sued, I’m putting you on this to cover my ass”.

I have yet to find a large or in depth study of PR+ only and it seems some in the research community consider it an anomaly. I will continue to take it however grudgingly. I’m not leaning towards switching to an AI down the road because there’s a big history of osteoporosis on both sides of my family, apparently I have a bone weakening genetic mutation ( found due to all the blood work that comes with cancer treatment), and a strong history of cholesterol issues on my dad’s side. I’ll do my 5 and then we’ll see.

Trvler - have you tried Melatonin or maybe if available in your state THC oil for helping you sleep? Unfortunately melatonin will get you to sleep, but not always keep you there, so I just take another if needed. Apparently it's good for inflammation in the body too. THC oil helps me sleep all night, the side effect of that is hunger. I only take it when I absolutely need something to calm me down, like the day my step dad died I took some as I was a crying, hyperventilating mess.

CDV - I am shocked you have to take Tamox with not being ER positive, have you thought about a second opinion on taking it? Personally the SEs are not worth it for me if it doesn't help the type of cancer I had. Not to mention the cost of it if you don't have coverage.

The brand I am on that has a few SEs, but currently manageable is Nolvadex. Although my fatigued seems to be increasing again, nausea (could be the diet I am on), TMI warning!!! vaginal leaking although harmless, is a pain and stinky, pain in feet if I miss talking magnesium, stretching my feet - WOW! the first two are the worst and hopefully the doctor will have some answers for me tomorrow.

Shelabela: So can you still O?

I have tried melatonin.

Is there any new post on Tamoxifen ? I just started mine an it us really irritating my stomach. An the hott flashes an joint pain is bad already .

I'll pipe on the Pure Romance. Find yo'self a dealer! The women who sale the products care about women's health and well being. Just because we had BC doesn't mean we have to give up a healthy sex life.

rgossen, Constipation is a fairly common SE with Tamoxifen. The advice of a rectal surgeon with whom I worked years ago is helping me--berries and a hot beverage (could be a glass of hot water) with breakfast. That and walking and drinking 2 liters of water each day. Good luck.

Rgoosen - if it gets bad look for a product called Cleansemore in the herbal section or herbal store - works fantastic!

Nat Blue - have you thought about trying a different brand of Tamoxifen? I had the pelvic discomfort with the last brand I was on, among other SEs and this new brand, while has its own SEs, they are not as bad as the previous brand.....yet.

Yes, I have all my reproductive organs. I had many problems during peri-menopause, but went through a relatively early menopause, so I ended up keeping all my parts. Tamoxifen made me feel like I was back in peri-menopause which I assume is its estrogenic effect on the uterus. My obgyn calls it two bad choices, but she thinks the aromatase inhibitor might be a better choice. A hysterectomy is probably another choice, but it's more punishment on my body and tough to be off more when I live alone and must be the bread winner.

after 2 years of insomnia and trying everything under the sun to get sleep, finally found something to help. Elavil has me sleeping so good now!

Hi Ladies

It has been a while few weeks since I last stopped by. Tamoxifen wasn't quite has bad. But now it is acting up again and of course not in the best of ways. I have been on T for 10 months now, and I think I just had my first hot flash. But the wired thing is that it has seem to been in conjunction with my period, so now can get hot along with having the normal period cramps. However the period cramps seem to be a everyday thing now since starting Tamoxifen. Oh Joy!

Was wondering if anyone else get hot flashes more often during their period? What is your best way to cool down? Ice packs have helped, but any other ides are welcomed!

Thanks for listening to my T vent.

Cheryl: sorry for the late response to answer your question about summer school I work at a all year round preschool so we don't really get a break. I work with 2-5 year olds. Not sure about summer school at other schools for the big kids. I hope you and your boys are enjoying your summer. Hope your side effects are too bad.

Wishing everyone a good day.

Hugs to all,

Sara

I picked up my first prescription yesterday. I think I'm waiting until Aug 1 to start, making it an easy to remember date/schedule. Of course, that just gives me more time to dread the possibilities of SE! (I also picked up Biotin as I have skinny hair to start with. My MO didn't think it necessary but didn't object.)

Biggest surprise is that my MO, who is very well regarded, is telling me to continue with my buproprion prescription. He did agree to test my CYP2D6 to make sure I wasn't a low converter to start, but he explained that the buproprion (Wellbutrin) connection wasn't as strong as made out to be. I'm not so sure about this, anyone have any other input? I love my buproprion, not in the least because I dropped 10 pounds in the last year without thinking about it, but I also don't want to have Tam SEs without benefits!

VL22 I have a little pill spliiter thingy and it works like crap. It's a pain in the butt to open the top, position the pill just right, squeeze it shut. To hell with that! I put my cutting board on the kitchen table, get my big knife out that I carve the Christmas turkey with (okay, prime rib, not turkey, who am I kidding?) set a pill on the board, get the knife lined up over the little slice mark and, with my free hand covering the operation, I slowly press the blade down into the pill. Boink! Splits apart. Most of the time it splits pretty well. Sometimes a bigger junk or littler chunk. Whatever. I scrape them all into a bottle and use them to refill my daily pill holder jobby.

I don't think the point is to get EXACTLY 10 mg every day. The point (from my perspective) is to get a certain level of tamoxifen in my body and keep it there and from everything I've read, taking anything over 5 mg a day will do that. Even if you mangle a pill you're still getting at least 5 mg a day. And then you'll get more the next day. It averages out to 10 mg a day. And just to play it safe, twice a week I take a full 20 mg dose. Sunday and Wednesday.

If I shatter a pill to mush, I toss it and carry on. I sit and split once every 6 weeks or so. Do a whack and have them on hand. I might be gambling with my life but the truth is that no one can tell me for sure if I am or not. The research was never, ever done.

Twinsmama ... I think we all catch our breath the first time we swallow that pill. I am almost a year in, I started Aug 1, 2017 and while the effects are still here, they are not debilitating. Soon I will be bald and have a beard to rival Hub's... but I get through my days without tamoxifen being the main thing on my mind. It was harder getting cancer off my mind and feeling hopeful again. But the light came. I do have some moments of pure joy and peace. Last year I was away from home for a month having radiation and missed the best of garden season. This year I have marvelled in my flowers and berries and fabulous red tomatoes - and I feel real, solid joy in the simple little things that are actually miracles with leaves. Slowly, slowly, the light you used to know will find you again. When you aren't expecting it. It flits in like a butterfly and you'll catch yourself being surprised and happy. One moment at a time.

rumor

Are you trying to take over my job with that cheery talk about light and butterlies:)

Signed,

totally bald likely forever Scrafgal

I’m doing really well taking tamoxifen on sun, tues, thurs, and sat. With my MO blessing!!! Liver counts down and not feeling like crap all the time. 25 mg dose of elavil at night has me sleeping like a baby after two years of insomnia from he$$!!!

dizzybee- That’s awful! Add that to the list of things no one warns us about! So sorry you have to deal with this. I’ve never even heard of Tamoxifen toxicity. Best not to trust everything we find on the internet and at least hope there is something they can do to fix it, at least until you know otherwise. When is your appointment with the specialist? Does your MO know yet, and have they recommended stopping Tamoxifen?