Bottle 'o Tamoxifen

Trvler

Thanks, Susan!

Suzanne50

And I join the club as well....starting tonight. My MO suggested I take it before going to bed. Here's to hoping no side effects for all! Happy New Year!

solfeo

Thanks CarolynAnne. I was already trying to lose weight before the dx so I've lost 80 lbs. all together. Obviously I had a lot to lose and I'm not done yet.

I don't know why, but my perception was that the tamoxifen was slowing things down, but I log my weight on My Fitness Pal and when I looked back that turned out to not be the case. I have lost less in the two weeks since I injured myself because I can't move much at all, but I was doing fine for the month before that on the tamoxifen.

For me carbs are key. I do not lose weight any other way, and there is also some evidence that a ketogenic diet could be helpful for breast cancer. It was recommended to me by my naturopath and my MO supports it. I do modify the diet in ways I believe to be healthier for someone with ER+ cancer.

superius

CarolynAnne : I'm 42. My last chemo was on the day when I was 42 1/2. last period was about 2 weeks after first chemo. At that time, my MO was on vacation, so I saw another dr in Aug, he said it probably wont come back, but when I saw my MO end of Sept, she said maybe couple months. So not quite sure what to expect or how to prepare if it does come back...

Hello Suzanne, looks like bunch of us from Aug chemo are here!

Suzanne50

Hi superius! August chemo group is moving right along! I am 50 - my MO said chemo probably kicked me into menopause. She said if I was under 45 my period might come back. My last period was 2 weeks before chemo started in August so at this rate I will be officially in menopause in July. Which means 2 years of Tamoxifen and then onto the other one - which I can't remember name of but for post menaupausal women.

Trvler

I am 52 and my MO said my period would probably come back. I think she is crazy.

DeeRatz

I'm 45 and had my last period a week after my first chemo. So early Sept. A few weeks after my final chemo I felt like my ovaries were trying to come to life. I was crampy and it felt like things were brewing. Since I have started Tamoxifen all of that has quieted down, back to dead ovaries. Who knows if it will come back. My mom was 45 when she went through menopause. So I'm guessing the chemo will have pushed me into menopause land. I sure as hell hope so because I NEVER want to experience all of this hot flash crap again. Once has been enough. They are my biggest struggle so far. Accupunture has helped to reduce them.

Sjacobs146

My MO said that I had a 50-50 chance of my period returning, I was 48 when I finished chemo. I am one year PFC now, and I haven't gotten it back. Somewhere I read that if it doesn't come back within a year it isn't ever coming back. Franky, I don't miss it at all.

keepwalking

Sloan - I'm glad that you are doing well on your dose of tamoxifen so far! My family doctor just said to see a gynecologist, but my appointment isn't until Jan 24. My MO emailed a short response and didn't say what he was considering. I hope to have that discussion with him in 2 weeks.
From my reading, I gather that a thickened endometrial lining is somewhat expected on tamoxifen, but CAN be a sign of uterine/endometrial cancer (small percentage), so after a certain point they want follow-up with biopsy/tests. Some reports said that is not recommended until >11 mm. Mine is only 7 but I guess it is concerning that it went to that in 2 weeks and the pain associated with it is not something I would want particulary to live with. Perhaps I just need a 2 week break - a reset as some on this site have called it?

lala1 - Thanks so much for your information! It is comforting to hear that they weren't so concerned until the lining became much thicker than mine. And also I am glad that you told me about doing so well after hysterectomy. I wouldn't look forward to another surgery, but if after that I could not have any more gynecological troubles it may very well be worth it. I am about 7 years post-menopause, so it is not like it would throw me into it. I am not taking AI because of osteoporosis, and hoping that tamoxifen would also increase bone density.

Tresjoli2 - Thank you! I wondered about Raynaud's. It would be good if it were that in regard to it not having a bearing on tamoxifen use. I'll have to ask my family doctor about that.

I am on day 4 of break from tamoxifen and the abdominal pain is almost gone. But my emotions are wacky right now!

Sloan15

Still taking my HUGE 40mg of Tam a day, and I feel fine. No SE yet. I'm just hoping my mood doesn't change. (Actually, my DH is hoping the mega dose doesn't make me mega crabby!) For people who got crabby, when did that set in? I'm hoping I was far enough into starting menopause when chemo threw me in completely and I don't get the mood swings. I'm not hungry, either, which is what estrogen did to me, so the Tam is helping in that respect. I think I'll be able to drop those 8lbs of chemo-steroid weight with no problems.

keepwalking - I've never heard of a reset, but the body is amazing. I hope the docs figure this out asap for you. You said your emotions were crazy - and then the finger incident - so it sounds like the Tam shocked your system. My friend changed to an AI because she struggled with Tam, and she's fine now. Do you feel better emotionally off the Tam?

Suzanne50 - Let me know the name of the other med, too. I thought I would be 2 years on Tam, too, since my blood tests said I was in menopause now, but the NP said, "Maybe. We'll see." There are so many studies out there about Tam before and AI's after menopause, I'm just wondering what the studies say about the perimenopausal crowd that a lot of us seem to be in.

ladyb1234

Keepwalking, my MO had me take a two week break after about 2 months or so on tamixifen because I had so many SEs. She called it a reboot. It helped a lot and I felt a lot better on the second go round And haven't stopped. I hope the reboot works for you . I also worked with my MO and Nautrapath to incorporate supplements, and adjust eating habits which I think played a huge part in getting my SEs under control and exercise increased.

keepwalking

Sloan - When I went on the Tam, it seemed like there was only a little change emotionally. I maybe found myself thinking a couple of times, "why did I react like that?", but it was not a major change. However, AFTER I stopped for a few days, I had a major cry fest yesterday over something relatively minor - and that is NOT like me.
From what I read, Tam doesn't change estrogen levels, but it modulates the estrogen response in cells. It acts differently in different types of cells - in breast cells it inhibits the growth effect of ES, but in bone cells and endometrial/ovarian cells it acts like ES. In bone that is a good thing because it helps bone remodeling and growth, but in the gyno area it can be problematic. Apparently, in the emotional area it acts like ES I guess my post-menopausal system was a bit freaked out that it seemed like I had ES in my system again, and then after 2 wks I abruptly didn't have it anymore. I seriously felt like a PMSing teenager yesterday. But I am okay so far today.

ladyb1234 - Thanks so much! It is good to know that stopping for 2 weeks might help the SE's.

Oddly enough, the mild hot flashes that have continued for me even after 7 years of menopause were actually much better when I was on Tam! I was cooler overall and didn't feel like I had to be taking my sweater on and off all day. After a few days off I am back to turning off the heater because I am burning up, and a few minutes later seeing my husband put on a jacket (Then, of course, a few minutes later I am cold too and the cycle repeats.)

Suzanne50

Sloan50 - I think the second drug I will be taking after Tamox is Arimidex. I believe that is the name of it. Originally they told me 5 years of each but I think if I am officially post menopause in July, it will be 2 years of Tamox and then 8 of Arimidex? Not exactly sure about that. I do believe that chemo has kicked me into full menopause. I was having horrible night sweats this fall but they have subsided. I have maybe one a night instead of four. So at least that is an improvement. I see my MO in a month so will get the details then.

Sloan15

keepwalking - like your name implies, you're a trooper! Your strength is admirable. I also didn't know that about Tam. I'm going to read about it, but I don't want to get freaked out and imagine every twinge is a SE. So, I'm going to let some time pass.

Suzanne -Thanks. I think that is what they said for me, too. I'd just like to see more info on perimenopausal women tnrown into menopause and what seems to be working for them.

Sloan15

I saw this variety of rose in the gardens of the Huntington Library last week.

We're all still hot; it just comes in flashes now.

DeeRatz

I am wondering if Tamoxifen makes you more sensitive to the sun? Will I have to be concerned about sun exposure? Looking at possibly going on a hot holiday in March

Lolis197138

@ DeeRatz, I believe chemo and radiation make you more sensitive to sun rays, I am not sure about Tamoxifen. As a person that has gone thru BC treatments I would stay clear of the sun (no long exposure) and protect myself as much as possible. Hope other ladies have a better answer.

gremx003

I am new to this topic but very interested.

I am finishing radiation therapy next Friday and then will start Tamoxifen. I am scared a bit after reading about it.

I am 52 and premenopausal, I have severe hot flashes since 3 years...I was on HRT because of the hot flashes before they found my cancer.

My hot flashes are every 5 to 10 minutes, I have so severe night sweats it is unreal, have to take showers at 4:00 am, I haven't slept in 4 weeks, may be an hour a night. I am exhausted during the day. So before me starting Tamoxifen they were trying to control the hot flashes and night sweats, last week they gave me Effexor which made me sick and dizzy so I quit now back to square one and will try as of tonight Melatonin hoping to sleep.

Supposely one of the big side effect of Tamoxifen is hot flashes so I am not looking forward to this....

Sloan15

Gtemx003 - I was premenopausal, but I had chemo and that put me into menopause at 50. I'm on a huge dose of Tam (40mg/day), and I didn't notice my hot flashes get any worse. Actually, I think they were worse in rads.

Wendy3

gremx003 I have been on the tamoxifen for 6 months no hot flashes, having said that night sweats were an issue in the first three months now it's better. I don't know if you have given medical marajuana  any thoughts or even what state you live in. I've found it to be very helpful in tinctures for sleeping and controlling hot flashes. 

gremx003

I am in Canada in Ontario.

I will give it thoughts and research....thank you

DeeRatz

gremx003-I too have had terrible hot flashes since chemo put me into menopause(at 45). I haven't found them to be any worse on Tamoxifen. My night sweats are about the same. I started Accupunture in Dec and that has made a huge difference. I hardly notice my hot flashes during the day anymore, when I do have them they are less severe. I was having probably 50 hot flashes a day. I still have trouble at night but that seems to be also getting better.

gremx003

Thank you DeeRatz, actually I was just reading an article on the internet about acupuncture....doing research to find someone good in my area.....I have to do something as yes they are there all the time......

lala1

gremx003--I was premeno when I started Tamoxifen and was on it for 2 years without ever getting a hot flash. It wasn't until I had my total hysterectomy last Jan that I started getting hot flashes and night sweats. My holistic doc suggested Peridin-C which I buy from Amazon and you can read the reviews on it and my MO suggested iCool which I buy from Walgreens. Both can be take despite the BC diagnosis and I actually take both. Do a little research and ask your docs what they think. Might be something that will help you down the road. I've gone from about 12-15 HF a day to about 3 or 4 which is very doable for me.

chrissie29

Hi Ladies-I am a 45 (43 when diagnoses), and I have been on 20 mg Tamoxifen for about 10 months. At first, I had no side effects, but after a few months, I started having dryness in my eye, sinus issues, and headaches that all seem to be related. I have read others have had sinus issues-did anything help or just drink lots of water? My MO did hormone testing on me 3 months ago and last week. I am in the post menopause range so he mentioned that he might switch me to a different combo of drugs, but he said they can have the same SE as tamoxifen. Thanks for everyone sharing their experiences. This site has been so helpful.

Chrissie

CarolynAnne

solfeo- I'd love to know what your ER+ diet modifications as I am also ER+ and would love to lose some weight!

I would also love to get a good night's sleep! Ugh. 4:28 am and haven't been to sleep tonight. Have to get up with my D for school in an hour. My sleep has been getting progressively worse since starting Tamoxi. I've tried 5 mg melatonin the last couple days before bedtime. Clearly it is not working!

Any tips? I guess I can't blame it all on the Tamox. It is the menopause too I'm sure because before all this, I was a great sleeper!

One year ago today, I got my cancer diagnosis. Now I am clear! So thankful for that! I should be happy that the wors I have now is sleepless nights.

keepwalking

Sloan - Thank you for your kind words. I think you are the trooper - You have been through more than me and always seem upbeat and encouraging! Loved the rose name in the garden - very appropriate.

Sloan15

Carolynanne - Like others have recommended, cut out carbs and eat more protein. It's a basic metabolism reset. I've been doing this for a few days and have already lost weight. Eat eggs and meat in the morning, like an omelet to curb hunger. Cheese sticks for snack, salad with olive oil and garlic salt at lunch with chicken or egg or cheese on it, and a meet and some veggies at night.

Go simple -hunk of meat or eggs- for a while, and that's the best way to shut out sneaky carbs from breading and casseroles. At first, maybe limit carbs to 20-30g a day. Look on the label of a food (or google it). Carbs minus fiber is what counts to the 20-30g. For a few days or a week don't have beans or fruit. Yes, that's bad, but the weight is worse. You'll add those in gradually after your body gets used to limited carbs. Just look on food labels and make choices. I cut out my gummy vitamins that had 11g or carbs to a vitamin with 0 carbs. Simple! I had eggs with 0 carbs verses toast at 17 carbs (22 carbs minus 5 g fiber), half and half in coffee not milk (fat over carbs, but don't go crazy here!)

After a few days simple eating (meat, cheese, salad with olive oil and garlic salt, no more that 1 cup of veggies at a meal), add in nuts, peanut butter. Then increase carbs to about 30, then 40, etc. And eat lower carb fruit like strawberries. Then, beans and lower carb grains. Lifelong, you try to stay away from white flour and sugar ( but when you do have it, note the carbs).

Some people buy a diet book like the New Adkins or South Beach, but it's all about calories in and calories out, and the low carb part resets cravings, lowers calories, and reteaches you to burn calories effectively.

I'm a health educator, so the disclaimer is to check with your doc. I'm sure he/she will LOVE that you are cutting out sugar and white flour! (aka simple carbs)

Like I said in an earlier post, I put on chemo weight. I also want to stay in the healthy BMI range for the Tamoxifen to work, so I'm looking for ideas to curb hunger. Most people on this site said "protein!"

It works (I've already lost weight), but I'm looking for other tips. I have found these help:

Protein (#1), look at labels and keep carb count (#2), do away with sneaky carbs like breading on fish or in gummies, midmorning tea, getting OUT of the house from 2-5 pm, cheese snack or salad snack, Fitbit motivates me to exercise.

Anyone have other tips? Sorry post was so long!

jojo9999

gabapentin is often prescribed for night sweats from tamox - I used it for a while when the night sweats were really bad (after being on tamox for 3 months) and affecting my sleep. It helped but I have since stopped using it because the hot flashes and night sweats went away. although they then came back! but not sever enough to ruin my sleep and make me a zoombie

MJS1266

I was perimenopausal when this all started and chemo stopped my periods but still technically perimenopausal. I was having mild hot flashes before tamoxifen but didn't notice any increase when I started. I stopped Tamoxifen for a month when I had a complete historectomy and ovary removal. At that point, the hotflashes did get worse but DR. said to wait and see. When I restarted Tamoxifen the hot flashes were milder. I don't know if it had anything to do with Tamoxifen but it did not make them worse. Hope that helps.