Bottle 'o Tamoxifen

pennsygal

Thanks, Robin. I take a few other meds also, and I just kind of lumped it in with those.

keepwalking

I wonder if about 5 lbs of the weight gain on tamoxifen could be due to hormonal water retention? I was on tam for only 2.5 weeks before having to take a 2-week break. I did notice about a 5 lb. gain in that 2.5 weeks, only to lose it all within a few days of stopping. I don't think that I changed my eating/exercising habits.

That said, I am currently in radiation and it caused me to not have much of an appetite. I started back on tam 2 days ago and yesterday I was much more hungry (of course, that could just be a result of the fewer calories catching up with me).

pennsygal - I think the timing just depends upon convenience plus mitigating any SE's you might have. I did morning first go-around, but felt like I had minor nausea sometimes an hour or so afterward as well as a short wave of tiredness. So this time I switched to night,

Jojo0529

hello pennsy... I am weaning off of Zoloft ... Not fun, but I read that Zoloft may reduce the effectiveness of tamoxifen. thinking of switching to an a

pennsygal

Yes, Jojo - it's pretty harsh. Although it's nice to burst into tears at the drop of a hat. I feel like for the past year, the zoloft kept that in check.

MarieBernice6234

Hi Trvler -

When I started Tamoxifen - last January, - that is how it affected me. About one hour after I took my pill, in the morning, I would become extremely cold. I would have to wrap myself in blankets or afghans. I don't remember how long it took me, but eventually, that changed. Now I have the other end of the spectrum - hot flashes. At first, it was only a few but recently they started to increase. I see my medical oncologist tomorrow for another 6-month follow-up. Here's to year #2 of Tamoxifen.

MarieBernice6234

MarieBernice6234

Hi Fizzdon52 -

It is funny that you should mention your shoulder pain. Just recently, I have developed a pain in my shoulder/upper arm area. I was beginning to think that I must have injured it somehow. My cancer was on the right side. Sometimes it is difficult trying to figure out what is real and what is a side effect. Going to ask my medical oncologist about it tomorrow at my appointment.

MarieBernice6234

solfeo

I'm having a new weird thing. Last night I noticed a white coating on my tongue and when I tried to brush it off it made my tongue bleed. I take high-potency probiotics and don't eat sugar or yeast so I don't know how it could be thrush. Anyone else experience anything similar?

molliefish

Sure sounds like thrush to me Solfeo. You could try a salt water rinse to see if it helps. I haven't had this experience with tam but did with chemo.

queenmomcat

Solfeo: (speaking from my own experience) Sometimes Candida does flare up when one's immune system is distracted--nothing to do with your own personal diet, which sounds exemplary. But this is more likely for those of us (like me) who've had flareups at either end in the past.

solfeo

Bummer! The last thing I want to be thinking about right now is my immune system malfunctioning, as I'm sure you can all relate. Just when you think you are over the hump.

From my reading I see some women do get recurrent vaginal yeast infections from tamoxifen, so I guess it follows that it could happen elsewhere in the body. I didn't see oral thrush specifically on the list of side effects but I found a discussion thread with women complaining about mouth sores.

Off to go rinse with salt water!

pennsygal

MarieBernice - I am also having that cold thing. I was freezing all day yesterday and woke up in the night feeling cold.

I had bloodwork done yesterday, and it looks like I'm in menopause. I can't remember if MO was going to repeat the tests in three months, or switch me to an AI now. Never a dull moment!!

goldenpawsKim

Hey Marie - I also have horrible shoulder pain (opposite side of lumpectomy). Let me know what doc says .... hate these side effects but I guess its better than the other option thanks.

Kim

Sloan15

Yaaaaaaaaaay!

Trvler

Yeah on the coffee, although I only drink one cup a day. Now if they could just say ice cream helps something.

Wildflower2015

Yay for coffee! Now if they can find a similar benefit from beer or wine, I'll be set for life

Sloan15

Those help attitude. Haha

Wildflower2015

A good attitude is very important!

One_Bad_Boob

Saw my onc last night and now I'm on Team Tamoxifen! I travel to FL the beginning of Feb for work so I'm going to wait to start taking it when I return. I really don't want to experience anything weird while traveling. I'm already having major hot flashes and I'm a little nervous about the more serious side effects. I'm mentally working through the positives of this drug and not dwell on the "what ifs". Will be tracking this post to see what others are experiencing.

Took a few extra days in FL and I plan to relax!

ClaireFraser

Hi, goldenpawsK,

I think my issues are just normal wear and tear, although I'd love to blame the white pill, lol. I have always carried my purse on my right shoulder, I also sleep on my right side. I am scheduled for surgery on Feb. 10, so I'll be stopping the T two weeks before and won't go back on until two weeks after the surgery.

Has anyone been taking T for over a year and still having periods? I've been bleeding for two days and it's still pretty heavy.

Claire

solfeo

One thing I've learned on this BC roller coaster is that you can find studies telling you just about anything you want to hear. I ran across multiple articles that said alcohol reduces the effectiveness of tamoxifen, but when I went looking for the actual studies, this is what I found:

Moderate coffee and alcohol consumption improves the estrogen metabolite profile in adjuvant treated breast cancer patients: a pilot study comparing pre- and post-operative levels.

"In this pilot study, breast cancer patients who started tamoxifen during radiotherapy and who had a moderate coffee and alcohol consumption demonstrated a significant improvement in their estrogen metabolite profile between the pre- and post-operative visits."

And this one that found tam reduces alcohol-induced cell proliferation and colony formation:

Tamoxifen represses alcohol-induced transcription of RNA polymerase III-dependent genes in breast cancer cells.

"Alcohol-dependent increased occupancy of Brf1 in Pol III gene promoters is reduced by Tam. The repression of Brf1 and Pol III genes by Tam reduces alcohol-induced cell proliferation and colony formation."

The one study I found that tries to explain how alcohol might inhibit tamoxifen was done in a lab on a generic ER+ BC cell line, and doesn't prove anything because it's just speculating about the possible mechanism. It also seems to be negated by the one above that says tam reduces alcohol's gene promoting effects (they are looking at the same genes):

Alcohol Regulates Genes that Are Associated with Response to Endocrine Therapy and Attenuates the Actions of Tamoxifen in Breast Cancer Cells.

I may have missed something, but I didn't find anything that conclusively showed alcohol reduces tam's effect in actual use. I always think better safe than sorry so I don't overdo it, but I do have a couple of glasses of wine on Sundays as a weekly treat.

Suzanne50

Don't be messing with my coffee! That is good news!

Alcohol is a bit unclear since they advise you steer clear of it with ER+ BC. But I don't think a glass of wine here and there on occasion is going to hurt anyone.

I am two weeks on Tamoxifen and happy to say I am feeling pretty darn good. Only side effect that is noticeable to me is more intense night sweats. This week was a good week - energy returned. Last week I was so tired and of course, blamed Tamox. More likely it was just a tiring week and was unrelated to the white pill.

superius

I don't drink anyway, so that doesn't concern me (does the sip Sunday morning counts?). Even IF I do, I have bunch of friends watching over me like hawks (2 MDs - one in cancer research, a radiologist, 2 cancer researcher-drug developers). I see them couple times a week, so I better behave myself!

Trvler

The way I looked at it was I could always stop it if I was too miserable. But so far, my only issue is chills and I was having those before I started. I am thinking some B vitamins might also be helpful.

superius

Trvler (& others) How do you deal with the Chills? I found myself tightening my neck & crunching teeth, & now I have aches & pain in the neck.

TinyDancer5

I picked up my first bottle of Tamoxifen today. Is it better to take it in the AM or PM. My MO said it didn't matter as long as I take it the same time each day.

queenmomcat

TinyDancer: I honestly don't know that WHEN you take the bleeping tamox matters. Best choice: when it minimizes side effects....and you won't know that until you start taking it.

ksusan

Superius: Wool socks and a silk undershirt worked for me. I had cold flashes in perimenopause.

MarieBernice6234

Hi Pennysgal -

It seems like we have a lot in common with the "cold" thing and all. I don't have that problem so much anymore like I said. Today I also saw my MO.We had a long discussion, with me in tears about coping with the Tamoxifen. For a variety of reasons that are too long to explain, we decided that I should come off the Tamoxifen for 4-6 weeks to see if there is any difference. If it is the Tamoxifen that is sending me around the "emotional edge" then she might start me on an AI as well. She thinks that I may have entered menopause. This is the first time that I actually shared with anyone how I was, or was not coping with the Tamoxifen. My MO was great - she could really understand that I was in pain. How has it been for you with the Tamoxifen and menopause?

MarieBernice6234

MarieBernice6234

Hi GoldenpawsK -

I did mention it to my MO today as well as the painful ankles - but that could also be because I recently broke both my ankles and now the weather is getting colder out. I think that she feels that some of these "pains" could be from the Tamoxifen. I am coming off of it for a trial period of 4-6 weeks due to emotional reactions that I can't manage to handle any longer. After that, there will be a re-start of either the Tamoxifen or some type of AI.

MarieBernice6234

Trvler

I read someone on here was getting acupuncture for hot flashes so I thought i would give that a try. Oddly, I was doing a little better BEFORE I had the first one and after I had a hard time for about 24 hours. Coincidence? Who knows? I also want to research Vitamin B. I can't help but feel it's somewhat never related and I think B vitamins can help but this is just me guessing. i will let you know.