Bottle 'o Tamoxifen

Skiboots42 - I hope your mood changes do improve. I have been on Tamoxifen for 2.5 years and I feel that it is making me gloomy and anxious/sensitive. However I think it has gradually got better over the months and particularly the last couple of months, because I remember some very intense dark times that I just don't get now. I'd be very happy if I really did properly improve. The trouble is everyone seems to have such a wide variety of side effects and your reaction and how side effects come and go will be unique to you. Weirdly I have been lucky with other typical side effects like hot flushes and joint aches. Also you don't know how your own changing hormones or circumstances are making you feel.

To cope I have negotiated a one month break from Tamoxifen once a year, (I have a pretty low risk case). I've had one break so far and I did feel better. I would not want to recommend not taking Tamoxifen though because it might make it easier for the cancer to come back. I'm just taking a risk because basically I need the break to be able to carry on. You can do all the usual healthy eating, low caffeine/alcohol and exercise/treating yourself stuff to help you feel better. I'm currently am trying to read a book on mindfulness (for what it is worth) but can't get round to concentrating on it, how ironic

I stopped Tamoxifen for a month due to hot flashes every two hours and a tingling numb face, arms and legs and headaches. I also felt like I had ants crawling on me. I was not sleeping and stressed. I still have hot flashes, but nothing like the ones I was having, that left me a sweating mess every couple hours. The first two weeks nothing changed, but then it was like a dark cloud lifting. I’ve come to the end of the month and feel like my old self. I feel the best I’ve felt since my diagnosis.

I dread going back on and plan to speak with my MO before starting again. My own research reveals that tamoxifen decreases my chance of recurrence by very little - I’m just really unsure at this point. I just hate my QOL on it.

I found a very informative website explaining EXACTLY how Tamoxifen works, what it does and what it doesn't do.

http://www.imaginis.com/breast-cancer-treatment/ba...

Tamoxifen is an "anti-estrogen" and works by competing with estrogen to bind to estrogen receptors in breast cancer cells. Tamoxifen is formally known as a selective estrogen receptor modulator (SERM). By blocking estrogen in the breast, tamoxifen helps slow the growth and reproduction of breast cancer cells.

While tamoxifen fights estrogen in breast cancer cells, it also mimics the positive effects of estrogen in other body systems. Post-menopausal women who take tamoxifen may decrease their risk of heart disease or osteoporosis (a degenerative bone disease) without having to use hormone replacement therapy (HRT).

Several studies have also shown the benefit of tamoxifen in preventing breast cancer is age-related. Women under 40 years of age typically show the least response to tamoxifen, women between the ages of 40 and 50 years of age show some response, and women over 50 typically benefit most from tamoxifen. In fact, early-stage breast cancer patients over 50 years of age who are treated with tamoxifen may be able to significantly reduce (or sometimes completely eliminate) the size of their breast tumors so that surgeons may perform lumpectomy instead of mastectomy. Researchers are not certain why young women do not respond as well to tamoxifen but believe it may be related to the amount of estrogen produced in their body. When a woman reaches menopause (typically around 50 years of age), her body stops producing estrogen.

I don't understand why some MOs prescribe AIs in place of Tamoxifen for post-menopausal women....

Yes, Lula, that's exactly why MOs make the switch. Oncotype recurrence risk, and the usefulness of chemo, is based on studies done with Tamox plus chemo. Whatever the stated reduction you would get, based on those studies, improves significantly with an AI.

Lula- perhaps I can shed a little light on the OS + AI decision. I was told by the docs at Dana Farber that there is still a risk of “breakthrough estrogen” with OS, and that AIs are not able to handle that. I’m not sure if that’s an actual risk or hypothetical, especially if you get the 3 month depot shot. Now my numbers have been bottomed out since I started OS, but I’ve seen posts by others who haven’t. I suspect age is a big factor in these decisions, since I was nowhere near menopause. Also, bone health played a part in the decision as well.

good point cpeachymom!

VL22, yes I think your genetic test results would have told you if you have the CYP2DX gene. The study that linked it to Tamoxifen metabolizing is fairly recent so here's hoping it's in your report and your MO can explain whether Tamoxifen will benefit you. It seems nuts to roll the dice and take it without knowing if your body can even matabolize it.

kstiles

Did you take the oncotype dx test? That provides specific answers about your individual recurrence risk and the extent to which tamoxifen plus chemo would reduce your risk. I think your doctor can send the sample even after your treatment, if your pathology center saves the sample taken from your tumor.

In general, the results tell you how much benefit you get from chemo Plus Tamox. Also, in general, the higher your oncotype score, the more chemo will provide a greater percentage of the benefit, relative to Tamoxifen, when used together.

However, the greater your ER positivity, the greater you benefit from Tamoxifen.

So, you should ask your MO for specific info about the oncotype test and your percentage of ER positivity.

Personally, I had a high oncotype, 95% ER and a grade 3 aggressive tumor. So, I needed the strongest chemo and Tamoxifen just to feel comfortable. The only good news is that I was more negative and also 90% PR positive. So that PR likely kept the czncer from spreading before I found the tumor.

Again, talk to your MO...

kstiles - I was like you and not liking Tamoxifen at all, the SEs were getting worse at time went on. The ladies on here have suggested different brands of Tamoxifen give different SEs. I am 7 weeks on the brand name version of Tamoxifen and so far the SEs have been manageable. I am wondering if you have tried a different brand?

Vargadoll, I use to get those, haven't noticed them in awhile now. Once I caught a cold and the heat wave hit I was hot all the time, now I am comfortable.

Vargadoll, Yes!!!! I don't even wear sandals in the summer because my toes are cold. Agree that wearing socks to bed makes a big difference. Glad to know that I am not the only one. Thought things might be different on Tamoxifen but still wear socks to bed and a sweater or light jacket in air conditioning.

ugh I wish I got cold at night. Darn still hot all night.

My headaches are getting better though. Still get a dry mouth from tamoxifen.

I had my exchange surgery yesterday! In some pain but not too bad right now

Shelabela- I use to get dry mouth to! I had forgotten that! Long story but I took Tamoxifen for a year and was put on Anastrozole for 3 months then back in Tamoxifen. The first year I would wake up my mouth was so dry. I use biotėnė and it helped. I've been back on Tamoxifen a month and so far I've not had dry mouth. I can't believe I forgot about that. Rest well and hope the pain is manageable.

I am almost 6 mos in and although my side effects have been minimal I am beginning to wonder if ill ever sleep again! taking melatonin , taking tamoxifen when I wake up...

yeah Cpeachymom I think I will age 50 years in the 5 I have to be on this. I sent my nurse a message to see if she has any advice. I am on the tamoxifen brand by Teva, if any one notices better results on another manufactured please share.