Bottle 'o Tamoxifen

gardengypsy

LynneBM~

Yes, I started 2 days ago. No SEs yet. Cross your fingers and go for it!

As I said earlier, for me,the commitment to taking this (and/or AIs) for 5-10 years was a huge part of the problem.

I've never had a prescription that said "11 Refills" before!

~gardengypsy

KateB79

Re: knee pain. . . . I think mine is actually caused by Herceptin, and not by tamoxifen. I've been keeping track of when it occurs, and it's always worse for the few days following a Herceptin infusion. . . . So that's good news, right?

Re: melatonin . . . I take 3mg every night, but I'm thinking of upping it. What is it like to take 20mg? Can you wake up in the morning?!

LynnBM

Awesome gardengypsy!!'☺️ Tonight will be my second night!!! Keeping my fingers crossed

2ND20

What exactly is this Taxamol. Everyone talks about it

---

Smoke

kbutler

picked up my first bottle today. Little nervous but I know it's just another layer of protection so I will gladly take that pill everyda

gardengypsy

KateB79

Yes, it's surprisingly fine. My naturopath says that it's important to buy from a highly reputable company .

The kind she recommended is made by "Pure Encapsulations, Inc."

~gardengypsy

enourage_mint

Hey ladies!

I started Tamoxifen last week and am grateful that there is so much information! So far I have only struggled with some GI issues and a weird temperature surge yesterday (not sure if either are directly related). Seems like it's a little soon to have effects, but yet again, these are some mighty cancer cell a*s kicking pills! Just trying to keep those estrogen levels droppin' low, low, low, low.

iammags

Day 3 for me and no SE's. Yet. My doc said that they can start as early as day one. Yikes.

gardengypsy

Day 5: A few more hot flashes and new joint pain. Tomorrow I am incorporating some easy cycling and walking into my routine. Hope it helps.

LynnBM

Yesterday was day 3 for me. I have a mild headache and a few flushes. Still keeping fingers crossed!

Wicked

I will be starting Tamoxifen after my excisional biopsies and had a question about periods. I am 49 and hoping that the one benefit I will get from this whole mess will be early menopause. (I've been asking for early menopause since I was 25!) My doctor said I might continue to get it! UGH!!! Wondering what everyone's experience with this has been.

kbutler

I had a coworker who started taking tamoxifen at 48 she is 56 now and of course is in natural menopause now and said she never had a period again once she started taking it. I am 49 and hoping for the same thing but the research I have done says you may not have periods but you can still ovulate that it doesn't put you in menopause. Boo, but still keeping my fingers crossed. I just started taking it this week

hsant

I started taking Tamo a year ago at age 48. I'm now 49, and haven't skipped a period since being on it. However, my periods are significantly lighter (I have a fibroid on my uterus, so big plus), and auntie Flo visits every 5 weeksinstead of four.

kbutler

hsant, dang it. I was hoping more often than not they stop. But since they don't stop ovulation I still need birth control. Seriously considered oopherectomy, get rid of estrogen and birth control all in one. Gyn said he would do it if Onc gave her blessings. She did but Ireally want to take a break from surgeries, Doctor appt, etc.

Trvler

Can anyone tell me if you miss a pill, should you take it? How far away from your normal time?

enourage_mint

Trvler,

I was told to never double up a dose, but to take it when you remembered. If you remembered the next day at your normal time, just take 1 dose. That is what my doctor told me (I haven't missed one, but I am new to taking it).

Hope that helps!

hsant

same as what enourage said. I was told to take it when I remembered. If it's a significant time after your usual time, and you want to get back on track, take it a couple of hours less or more the next day, and continue that until you're back on your usual schedule. My dad gave me this tip, and he's a retired physician. This happened to me today. I normally take it at 8a.m., but didn't end up taking it until 2:00. Tomorrow, I'll take it at noon, the next day at 10:00 and I'll get back on track the day after at 8:00.

Also, missing a day or so is not going to make a difference. I had surgery last November, and was told by my surgeon to skip it five days prior to surgery.

Kbutler, I went thru the same thing last summer. I was considering getting my fibroids removed, and my gyno suggested removing my ovaries also. This was two months after my BMX, and I honestly just wasn't up to another major surgery emotionally. I lost my breasts, and wasn't quite ready to part with my ovaries

ORgal

Wicked, I started taking it last year at 50. Before that, I had missed 2 periods in 2 years. Everything was pretty much on schedule my first 4 months of tamoxifen, and then it stopped. Haven't had one (or any sign of one) for 7 months. Geez, I guess I'm almost a year into this now. Hard to believe. I too was really hoping that after having to go through breast cancer I could get one advantage, so far it is working for me! Good luck.

Scottiemom11

It took lupron to stop auntie Flo or as my BF and I have always called it, the "Damn Guest?' I had one horrible cycle in between my two rounds of monthly lupron shots. When I stopped the lupron the second time it never came back. I see my OBGyn next week for 6 month check and need another US to make sure all is well.

Scottie

Musosgirl

I am 10 days in on this Tamoxifen journey and so far no side effects. My MO wants to start Lupron since I am quite regular with Aunt Flo, but I want to discuss my options with my GYN and it just so happens to be time to see him. So I got a 3 week reprieve, but I am supposed to have my mind made up on which form of ovarian suppression I am going with--Lupron, Zoladex, ooph, or hyster. by the time I go in for my next Herceptin infusion. I am wondering at 35, with very "determined" ovaries how long I would have to be on a shot form of suppression...

I take 5 mg Melatonin everynight--it really helps if I take it and an hour later actually go to bed and turn off. But I am naturally a night owl and love to read, so I often bypass my Melatonin window. I don't usually have a problem staying asleep though.

KateB79

Musosgirl, I'm starting Zoladex in a couple of weeks. My MO is all about it, even though my period hasn't returned and I know that I'm not ovulating (I used to get terrible ovulation pain). I always thought my ovaries were stubborn little suckers, but it seems that they're down for the big sleep.

My MO's fellow (whom I don't like, but that's another story) said this to me: "biochemically, you're in menopause, and tamoxifen will keep you there; physiologically, you're pre-menopausal." I'm not sure WTH that means, but I guess it means tamoxifen+Zoladex for at least five years. . . . I asked whether they could test my estrogen levels, and they both said no, that it doesn't matter because, at 37, my ovaries are making estrogen. Tell that to my hot flashes.

Are you going to stay on tamoxifen, or switch to an AI?

sherridl

It put me in menopause pretty quickly - started in September 01 and by January/February 02 no more periods. I have since read 50% of women stop their periods from Tamo. Good luck!

LynnBM

So day 5 of Tamoxifen and I'm starting to feel the SE. Have an upset tummy, headache and grogginess! How long does it take for your system to get use to the drug? I have a conference next Weds and my daughter has a state track meet tonight and I am not feeling up to it!

Musosgirl

Kate, my MO is adament about me staying on Tamox. I don't think he'll consider an AI for the first 5 years.

I guess I really need to do my research on this OS vs surgery thing. If removing my ovaries lowers my life expectancy, by how long? Anyone know the $$ cost for Lupron or Zoladex? That will be out of pocket for me and would probably be the entire 10 years. If my periods came back, I'm only 35 now and my mom did not hit menopause till she turned 50, would they make me continue OS past the 10 years?

MO does NOT want me doing surgery and with no abnormal PAP smears I doubt my GYN will recommend it. But I hate meds, and their side effects. I feel like so far I dodged a bullet with Tamox side effects/cost. Surgery is invasive, but suddenly feels like a one time and done solution--simplification, ya know?

This is my last major treatment decision, right?

KateB79

Lynn, that sounds pretty typical to me. My SEs were similar for the first month or so, and they've really tapered off (other than the hot flashes and bouts of tamoxi-rage).

Musosgirl, I find it really interesting that our MOs are going with OS+tamoxifen; the SOFT study seems to suggest that OS (or ooph) reduces risk in a statistically significant way for women under 40, but mainly when combined with an AI. But, as I've said here and elsewhere: If I'm gonna take pills for 5-10 years, I'd just as soon take the one with cardioprotective (and osteoprotective) benefits. It's comforting that you and I are in a similar boat.

As for last major treatment decision: GIRL, I HEAR YOU. I hope so. I really want this to be the last major treatment decision.

MJS1266

Musosgirl,

I had my ovaries removed and there was no mention of reducing my life expectancy but I am 54 and was peri-menopausal.  My BS and MO both referred me to the gynecologist oncologist about removing my ovaries.  The GO took a look at my history, my mother passed from ovarian cancer and I have a variant of unknown significance in the Lynch Syndrome so she recommended a complete hysterectomy.  I thought about it for a while and decided to do it.  My insurance funded no questions asked.  I haven't had any problems except dryness.  Hotflashes increased a bit but then evened out, although now that it is the summer they are more bothersome.  My MO kept me on Tamoxifen, probably for at least two years because I was tolerating it well no significant side effects and I have mild osteopenia.  I was on vacation so I probably missed something.  Why do you want to switch to an AI, if you are not having significant side effects on Tamoxifen?  Good luck, Mary-Jo

Scottiemom11

Musosgirl. . .lupron is an expensive drug. With the insurance I was on last year, I met my annual OOP with just 2 shots. We switched carriers this year and it's cheaper but still several hundred per month. B/c of my hystory ovarian cysts, I am followed biannually by my OB with ultrasound. Last one showed that lupron had effectively shut down my ovaries. Good .uck.

Scottie

Musosgirl

MJS1266, I was nervous about Tamox because I had to switch off my tried and true Paxil. It interferres, so I am on Effexor now. So far everything is okay--not great, but my PTSD is barely raising its head and the Tamox hasn't caused any new SE so I am good. As long as suppressing/removing my ovaries goes okay I am fine staying the course--only want to switch if I start having bad anxiety episodes. Quality of life for me includes my mental well-being too. But like I said, 2 weeks in and alls good.

Just the big ovary decision now... Suppress or evict?

lala1

Musosgirl--I elected to evict. I was 49 at diagnosis and no where near menopause, not even with Tamoxifen. But I requested a TVUS for a baseline which did show a thickened endo lining and ovarian cysts. We watched it for about 8 months but with an ever thickening lining my gyn suggested total hysterectomy which I did in Jan 2015. One of my best decisions. Surgery and recovery was a breeze (I did it laparoscopically) and I was back to the gym in 3 weeks and riding at 8 weeks and I could have started earlier but I wanted to be sure everything was good. I feel great! Yes, I have hot flashes which are very manageable as is my slight vaginal dryness. Really glad I took this worry off my plate.

Birdysmom

love all this real life info. Have been so busy trying to catch up $$ and working to post much... Have been on tamox now for a month. I can't tell if the moderate side effects, hot flashes, irregular gi and some joint stiffness, is from the Herceptin or the Tamox. Didn't have a real period yet, just some brief spotting one night.

It's not as terrible as I'd thought. I wonder if it's worth having an oophorectomy for added precaution? I'm 45, wasn't menopausal until treatment, so I'm in a "chemical" menopause like alot of the peeps here.