Bottle 'o Tamoxifen

Artista928

ndgrrl- I stopped after the disaster that was Letrozole for me after 5 whole weeks. I didn't bother with the other 2 AIs as I see it's basically the same se's. I asked the difference in additional benefit an AI has over Tamox and my MO said 3-4%. For such little % I'll take my chances and instead of feeling and moving like 100 year old every day I'll stick to 80 on some days. I'm grateful T is good to me. I have periodic discomfort of my uterus probably because it does irritate fibroids and can cause them to grow but that's about it other than a lot of fatigue that never went away since chemo. It's better than nothing.

lala1

Arista---My docs all said about 3-4% as well. Tamoxifen has been very doable for me so I'm sticking to it despite my hysterectomy. My BS said he's seen women with such bad SEs that he doesn't think he'd put his own wife or daughters on it unless it was really necessary. My BS and MO are both comfortable with tamoxifen for now. In Sept I take the Breast Cancer Index test so things may change.

ndgrrl

I asked my MO about the breast cancer Indexing test and said my cancer center does not do that yet, I sure hope they do that in another year and half when my 5 yrs are up.

What are the meds you have to avoid while on Tamoxifen? I know things like Tylenol PM because of the Benedryl in it has to be avoided. Are there others?

What side effects are you having? My dr does not recommend Effexor for hot flashes but there has to be something else to help? Are the hot flashes as bad since I am not post menaupasal?

Has anyone else been on an AI and been put back on Tamoxifen? I was wondering if my Libedo would come back? Its been non- existant on an AI.

Thank you so much.

angc

hi are you still taking tamoxifen - i was afraid too of the side efects but only have hot flushes once a day, its been only 2 weeks for me

angc

hi i have just started tamoxifen, 2 weeks now. all i have is hot flushes so far

Moderators

Welcome, Angc! We hope you find support here as you continue with your treatment, and that your hot flashes get better soon!

The Mods

Nancy2581

lala you crack me up. Too bad we don't live closer we'd have a great time bashing BC lol

Nancy

lala1

Nancy-- A few people tend to think me "irreverent" about my cancer but I figure if you gotta have this crap might as well get something out of it! You'd be surprised what tossing out the cancer card can get you sometimes....usually with big corporations that are trying to screw me! Bashing BC is a great workout!!

As I type this I'm hearing Olivia Newton-John's BC is back and has metastasized and I am so broken hearted. I hate this f'ing disease!!

Kechla

Hi all. I just found this thread. I've been on tamoxifen for about 6 months now. Had 2 cycles in the past 3 months that were just ridiculous and made me severely anemic each time. Heading in for a SIS today with my Gyn to see what's going on down there. Anyone else have incredibly horrible cycles after chemo is done and while on Tamoxifen? I did have bad cycles even before chemo/tamox but nothing like this. My MO nurse said that the cycles after chemo are expected to be heavy. If anyone else has experienced this, did they settle down after a few? How long did that take?

Also, I am ER+ but PR-. Anyone else similar? I've read some articles that indicate that Tamoxifen may be less effective for those who are ER+/PR-...

Anonymous

Lala I heard about Olivia Newton John too, I was so sad! I hope her treatment works and keeps the cancer away for 20+ more years.

A weird issue has popped up with me. Not sure if it's tamoxifen related or not, but for the past couple weeks I've had a weird sharp pain in my stomach area. Sometimes it's on the right, sometimes in the center, right under the ribs. It feels like indigestion (pressure/pain/bloated feeling). It has somewhat subsided. I feel it more when I sleep on my right side. I also find it goes away after I eat something. Has anyone here developed a stomach issue from tamoxifen? If so, what did you do to help?

triciaj20

Has anyone experienced tamoxifen induced retinopathy?

EastcoastTS

I'm on the Tamox. train, too. Three more pills to complete the first bottle.

A little pissed because I went to refill today and after one month, they switch brands. Got home with different pill. Um, that's a no for me. I know there is debate about which is better (perhaps subjective to person and reaction to fillers) but I did okay with Mylan. Just headaches a few mornings but minor ones. No hot flashes yet.

The new brand is Watson. I looked up on pill finder and they do have different inactive ingredients. So headed to the pharmacy tomorrow. I don't want to switch after one month...

This should be something they review before filling, IMHO.

More fun with BC!

ClaudiaMetz

I have been taking Arimidex but my oncologist suggested I start taking Tomoxifen. I am 68 years old and should only have one my year to take something to block the estrogen. Because of vacina dryness he suggested Tomoxifen. He said there was a slight risk of blood clots but just keep moving. Does anyone have have suggestions?Thanks

Artista928

My MO has me taking a baby aspirin daily so you could ask yours if it's recommended for you. I still have my port so that's another reason since blood clots can form there.

I've noticed every time I get T from Walgreens it's Teva brand. Not sure if it's nationwide contract or local, but for those of you looking for Teva, maybe call you Walgreens and see if they use Teva.

ndgrrl

Hi, I was on Tamoxifen, then Arimidex , then Femara and back on Tamoxifen starting soon. My MO said it is ok to take Benedryl and Tylenol PM etc while taking Tamoxifen. I swear when I was on it before that MO at the time told me to avoid those meds. What is everyone elses MO suggest?

Claudia. My first MO when I was first put on Tamoxifen told me that there is a risk of blood clots. He told me to make sure that I move to the music in the car if I am not driving and if I am driving to take a 5 min brisk walk for every hour that I drive. I was on it for a year and half and had minimal side effects. I had surgery to remove my Ovaries and it took a year for the MO to convince me to go on an AI. I started with Arimidex and it caused me horrible joint pain and leg swelling so was only on that from April 16 to Aug 16- End of Sept I started Femara and though there is not much joint pain, my Cholesterol and BP went up and my bones thinned. I also do have vaginal dryness and no libido. I am 48,

My new MO told me that Tamoxifen lowers Cholesterol and is good for that bones.

stephilosphy00

Has anyone got mouth ulcers while taking Tamoxifen ? I am only on Tamoxifen for 1.5 weeks and one popped out yesterday, pretty sure it is Tamoxifen-related.

Artista928

Seems every MO has their own list of what's ok to take with T, which is why I take nothing. Just celexa, baby aspirin, vit D3 and vit C. Thankfully se's are pretty much 0 on T.

dtad

I agree that MOs disagree about what not to take with Tamoxifen. IMO pharmacists are better equipped to answer that question. Good luck to all...

ndgrrl

Took my first pill of Tamoxifen. I had started it in Sept 2013 and took off for an AI in April 2016, Tried those not good. So full circle back to Tamoxifen. Scared for those first side effects to kick in again as they did in the beginning Hot flashes- tiredness and upset tummy. I sure hope that stays away this time!!

Artista928

Don't think about se's or they may come to fruition. For upset tummy I find taking a probiotic every day solves that for me. And I will say that I don't get as much warm flushes as I used to. I'm in menopause and would have a flush once a day. Now I go days without one. Is it the T? Don't know but I'm rather liking it.

dtad

Artista...I'm so glad you are doing well. However I have to respectfully disagree with you about your mind over matter philosophy. IMO you have to be aware of potential SEs. These are powerful drugs. Most MOs are not forthcoming about it which means we have to do our homework. My hope is that everyone does well on them but I still think it's very important to be informed, and I don't believe that if you are that will bring them on. Good luck to all.

Artista928

dtad- I don't mean not to be aware of se's, of any meds otc or rx. I mean don't take it and sit there thinking about se's. Pop the pill and go on with your life. If something feels off then pay mind to it, but not until then. So many people pop the pill and expect the se's to come. Sometimes then your mind can contribute to coming to fruition. That's kind of like the way life can be. Be careful what you put out there. You think you are sick all the time then you'll probably feel sick when in fact you aren't.

ClaudiaMetz

I am getting ready to have injections in my spine for back problems. I am concerned about the tamoxifen. I go back to the pain consultants about the next step with my back. Still have enough Arimedix to last 3 more months. I was told not to take benedryl or Claritain. Not sure what to do.

Trvler

For mouth sores, the first second you feel one coming on, take a couple of l-lysine capsules. Continue taking them throughout the day. I used to get horrible ones. I finally researched what I could do when I got a whole mouthful of them at once. Since then, I have maybe had 2. Lysine stops them in their tracks.

BebeZF

Artista928

Best reply ever, thank you! And so true, our mind has so much power over matters. Positive thinking is half of the battle, firm believer.

Thank you for making me smile like I finally heard what I was trying to say, but didn't

xoxo

Bebe

ndgrrl

I spoke to my pharmacist about taking benedryl and he told me to talk to me MO who said it was ok to take benedryl and things such as Tylenol Pm while on Tamoxifen. I am a bit confused because I swore yrs ago when I was on Tamoxifen that I was told to avoid that drug. I am not sure about this new MO I am seeing. I am 3.5 years out and she told me I did not have to take an anti-hormonal drug anymore not finish my Zometa infusions( my past MO who moved started me on those as there is a promising study that says it will help keep cancer from moving to the bones). I asked to be put back on Tamoxifen as I feel I need to be on something for at least 5 yrs and I was thinking they were saying 10 yrs? I asked my new MO how often I had to see her and she said that was up to me? UMMM. isn't there a schedule and since I just restarted on Tamoxifen should I not be watched? I am so confused and just want to crawl into a hole for awhile.

Does anyone know if Clariton is ok to take while on Tamoxifen, how about Advil or Tylenol with no PM mixed in?

lala1

ndgrrl--I second the probiotic suggestion. I had an upset stomach almost every day for almost a year until I discovered probiotics. Haven't had nausea since. But I do take one with 14 strains and 35 billion whatevers. It comes refrigerated which my holistic doc feels is very important.

ClaudiaMetz-- My docs told me that Tamoxifen is good for the bones. Maybe it will actually help you with spine problems?

EastcoastTS

VSL#3 is the probiotic I was told to take by my alternative oncologist. It's sold at pharmacies, refrigerated. It's pretty high level and not super cheap. But before C, I was taking a probiotic daily that I got at the Vitamin Shop. Also refrig.

No issue with tummy from Tamox yet. Started second month 2 days ago.

gardengypsy

ndgrrl~ My pharmacist at Dana Farber told me that Benedryl was ok to take with T.

Are you taking the Benadryl for sleep? Be forewarned that Benedryl is anti-cholinic. It is not good for your central nervous system and strongly linked to dementia.

We've got enough problems without that.

BonnieBee

hi..it's about five years on tamoxifen for me. I was 44 at the time of diagnosis. I haven't had a period since then. Should they be switching me to something else ? Also why would the breast index not have been suggested to see if I need to continue? Thanks