Bottle 'o Tamoxifen

annoyingboob

for me, side effects within a week. intolerable after a month. took a month after stopping to recover from it.

Trvler

My worst SE is arm cramps and it took a while for them to get really bad. Like a year.

gardengypsy

Tiny

I have used Hawaiian Botanica for a few years now. Went to Mexico in February and barely got a tan. Lol.

TinyDancer5

Thanks Gardengypsy

willa216

Hi everyone:

I've been taking Tamoxifen for about three months with limited side effects, mostly hot flashes, joint pain and insomnia. In the past month or so my eyes and face seem puffier than normal . I'm also getting intermittent swelling in my calves. Has anybody had this? I'm still receiving herceptin infusions through August. My onc seems to think that herceptin when administered by itself doesn't have side effects, but that's not what I've read here.

I'm getting a lot more depressed, but I guess it's hard to know why exactly.... I take Actavis Tamoxifen (distributed by Mayne).

Thanks so much. Best wishes to all.

gardengypsy

Willa- Do you think the insomnia/lack of sleep creates puffiness in your face?

Hot flashes, joint pain amd insomnia are considered "limited" side effects, but they are very difficult to live with!! Are you getting good survivorship care to help you through all this?

Artista-Is the infection under control??

Leslie- Welcome! I guess they came on for me within a month. Everyone's different, probably.

Artista928

I thought it was until an hour before my appt felt a bit of fluid under said foob. It wasn't sweat. So I went in early. Would rather sit there nervously than at home.

Turns out there is a tiny hole the size of a pin hole on my suture where a bit of fluid seeps out. I'm to keep on abx, keep area clean, use neosporin and keep covered with gauze. Follow up Thurs 9:15 am to determine if hole closed then cool, am to do more abx. But if not, implant will have to come out. I forgot to ask him chances of it closing on it's own in under 2 days..

At least this time I have time to figure things out. Last infection it was go to hospital now. Now I have my guinea pig who is on abx 2 x a day as well. Called her vet and ok to take her tomorrow to be boarded. They'll take care of her and give her meds. If sx is a go on Thurs, won't and don't want to scramble to get her an hour away and back and rush. If I'm lucky and no sx on Thurs then I'll go after my appt to pick her up. My friend Anna is able to drive me and I can stay at her place until I'm well enough to climb these steep steps to even get in my place. Thank God the weather will be cooler on Thurs and on. It's too hot, making me feel worse.

What I hope to do, if insurance pays for it which according to the bc fed law, they should (?) is to pull out the right one too. This one I'm not happy with. It needs adjusting. We were talking symmetry sx on this one. It's a bit too far right and lower than the left. So if one is going I hope both can go for symmetry sake most of all. Summer is here in CA and I don't want left flat and right size C cup. It's always 6 mo wait before he does another sx, so I figure Nov is the soonest I can them back in. What a major depressing pain in the ass. I've always had complications of some sort from day 1. What are the chances of getting infected 5 mo out from perm implant sx??? jeebus.

Thanks for asking gardengypsy. My friend Anna just texted me that her 90 y/o mother (who lives in assisted living) fell on her way to the ER. So 2 dramas today. Waiting to hear if she wants me to go over to ER. Mother is mean but likes me so I go if mother is difficult as she softens up when I"m around.

willa216

Gardengypsy: Thank you - yes, I've definitely thought that the facial puffiness could be due to lack of sleep. But I feel like that's less of a possibility since I'm also now having the swelling in my lower legs. My onc has ordered another muga to check heart and an ultrasound to check for possible blood clots. Thanks for asking about a survivorship program. The doctor in charge of that at my onc center doesn't think support groups are a good idea because she thinks people get stuck in them. That seems kind of like a broad brush stroke to me and now I feel annoyed by her comments. I am doing a yoga class with an amazing teacher and the group includes just bc survivors. There is a limited amount of discussion in those classes but I think I'm going to have to find a full fledged support group. I was seeing a therapist on an individual basis however she tragically committed suicide about a month ago. So heartbreaking.

Leslie - wishing you well. I was okay for the first three months of Tamoxifen. Felt pretty good and optimistic despite some joint pain, insomnia, and the hot flashes (holy moly). What I'm bothered by right now (swelling) may not even be related to Tamoxifen. Lots of people do well, as I'm sure you know. I have two friends who have taken Tamoxifen or Arimidex for ten years without any issues except some hot flashes.

Artista - I'm so sorry about your reconstruction issues and infection. I feel for you. I'm experiencing those as well (post surgery issues but no infection). It's hard to relax and settle into your new body when it's not right and more procedures stretch in front of you. Good thoughts to you as you work to get this situation resolved and good vibes for your sweet guinea.

Love to all.

Anonymous

Hello everyone! I haven't been active on the site since I came out of the bulk of my core treatment back in 2011. Sadly, I have a 41-year old niece who was just diagnosed stage IV so I logged on to get some insight and thought I'd visit some of the threads I'd marked as favorites while I was poking around.

I noticed there was some discussion on page 892 about why Tamoxifen causes other symptoms since it's meant to block the cancer receptors from "consuming" the estrogen (I believe the question was "shouldn't that mean we have MORE estrogen in our systems, not less?"). I think the issue is that it's not just the cancer cells that are blocked from using the estrogen. So, even if there's more estrogen in your system, you have many tissues that cannot absorb/use it because of the Tamoxifen. Hence the menopause symptoms. Fortunately, the bones still get the benefit of the estrogen, it seems. I had a complete hysterectomy when I was 34 (now 56; diagnosed at 49...figure 15 years of HRT caused my 100% ER sensitive BC) so I'm post-menopausal, but osteopenia and my mother's severe osteoporosis pushed me into Tamoxifen instead of an AI.

I've been on Tamoxifen for 5.5 years; when I started, they said 5 years but then advised a year or so later that studies had changed the recommendation from 5 years to 10 years, so...4.5 years to go. I've had hot flashes every hour or two during waking hours (and 2 to 3x per night) for the last 5.5 years. I deal with them in several ways: natural fiber/breathable and/or moisture wicking clothing, gave all my pullover sweaters/turtlenecks to my sisters, keep cardigans all over the place (often cold due to the moisture on my skin after a flash), USB-powered fan hooked up to my computer at work (Target), and a love affair with my remote-controlled ceiling fan in my bedroom (lifesaver). Oh, and I'm never without a hair clip; I don't look good with short hair so I keep it just past my shoulder's and shove it up onto my head when they hit. lol

I asked the doc about the severity of my hot flashes...apparently some people have NO hot flashes (jealous!), some have them for a period of time between a few months and a couple of years, and some have them the rest of their lives! I don't know if Tamoxifen is the reason for the severity of my experience or not...God forbid I'm one of the "congratulations...you get to have hot flashes for the rest of your life!" crowd. I have noticed that I'm really sweating more with them the last couple of months; the board members' comments about changes in the manufacturer (was TEVA, now Mayne) have me wondering if that's why! Based on the comments here, I am considering trying a break for a month to see if that has any implication...but, if I do that then I'm doing NOTHING to stop the cancer from coming back (surprisingly insecure about that now that I'm down the road a ways) and, if I prove it's the Tamoxifen for sure...then the next 4.5 years will be twice the torture! Might just suck it up for the rest of my 4.5 years...

Sorry this is so long! I wish you all the minimum of side effects and the maximum of benefits!

Lorri70

hi Tinaj, I'm sorry to hear about your niece that's very tough I suppose having been through cancer yourself you will be a good support to her as you understand some of what she going through maybe tell her about this site, it's been invaluable to me.

I've only started taking Tamixofen started 5 years of it on march 1st, the 2nd month of it the pharmacist gave me a different brand of Tamixofen I was having bad hot flushes all day every day no night sweats though, I saw on this website that the brands effect people differently,so I called the pharmacist and he agreed to give me the original one, but he said I'd say it's the drug not the brand, but they have improved 10 fold some days I get none some the odd one I'm very happy, I'd started menopause symptoms in November 2015 that's why I went to the Dr in the first place I am 46,the brand I take is made by Maylan

xisanin

Hello everyone

This is my first post.

My name is Nina and my mum has been diagnosed in 2012. Thankfully no recurrence and she's doing quite well.

She has been on tamoxifen for nearly 4 years now and on her last gyno check up she got diagnosed with adenomyosis uteri. The gyno didn't really say much about it but she has been very concerned ever since and I feel terrible seeing her like that. Can anyone give me some word of comfort? Is this a progressive condition that can lead to uterine cancer / endometrial cancer? Has she any need to worry and investigate further?

She's 59. In menopause. Her endometrium is 3mm so that's good.

Thanks for your time and I apologize for any grammatical mistakes, English is not my native.

WenchLori

Hi everyone, I have an appointment with my MO on the 23rd and I will start Tamoxifen soon after that I'm sure. I hope it's ok that I tag along for this step in my treatment? I need to learn whatever I can as it helps me deal with things a lot better. I'll spend the next couple of days just reading 😊

Artista928

Welcome Lori. I hope you do well on it. I have minimal issues with it causing some discomfort in pelvic area but other than that, much MUCH much better than Letrozole (Femara) was to me.

Pamela23

I'll be joining soon too. I finished radiation in April after doing 4 rounds of chemo. I went to the GYN to get a baseline of my uterine lining before starting this and she found a polyp on the sonogram. I'm getting it removed mid May and plan to start Tamoxifen a couple weeks afterwards so I can heal. I've been reading this post for a couple weeks and appreciate the tips, especially the brand and number. I wrote that down.

Siciliana

I will be completing rads soon and the oncologist has written a prescription for tamoxifen which I will start in about a month. I am post menopausal, but MO thinks tam would be best for now, since I have osteopenia and mild osteoporosis in a couple of areas. After about two years, he thinks I will be switched to AI. He says tamoxifen tends to build up the bones whereas AI's reduce bone density.

I have not picked up the prescription yet, but if you were me, would you try to start on one particular brand over another, or just try the one they give me and see if I do OK on it?

lala1

Siciliana---I've been on Tamoxifen for over 4 years and am now 2 years post menopausal after hysterectomy. I'd say just try the Tamoxifen they offer. There really are a lot of women who don't have SEs or have very few. Might as well go into it optimistically thinking you'll be one of the lucky ones. Then if you need to, you can try a different brand. I'm one of the ones who has minor SEs and the ones I have I've found remedies for...not cures, but a remedy that let's me live my normal life. For me, it's all about supplements! But give it a try first. Fingers crossed for you!

BebeZF

Hello ladies,

I am starting old good Tamoxifen on Monday and I am really hoping for the best. If you don't mind, I will share my experiences on here

I have picked up my prescription and it looks like it's from Mayne Pharma (I believe prior TEVA). A little bit nervous as I already feel side effects even before starting it, LOL. But that's me.

Have a great weekend and let's enjoy every day to its fullest

Bebe

BebeZF

Hello ladies,

I am starting old good Tamoxifen on Monday and I am really hoping for the best. If you don't mind, I will share my experiences on here

I have picked up my prescription and it looks like it's from Mayne Pharma (I believe prior TEVA). A little bit nervous as I already feel side effects even before starting it, LOL. But that's me.

Have a great weekend and let's enjoy every day to its fullest

Bebe

BebeZF

Hello ladies,

I am starting old good Tamoxifen on Monday and I am really hoping for the best. If you don't mind, I will share my experiences on here

I have picked up my prescription and it looks like it's from Mayne Pharma (I believe prior TEVA). A little bit nervous as I already feel side effects even before starting it, LOL. But that's me.

Have a great weekend and let's enjoy every day to its fullest

Bebe

Misty879

jp,

I asked my doctor the same thing about the estrogen tests to see if tamoxifen is working on lowering or balancing out my estrogen levels. He told me that tamoxifen does not stop the production of estrogen, so my body would still be making the same amount of estrogen on or off the tamoxifen. He said tamoxifen only blocks estrogen from binding to cells which could damage them and that damage to the cell

DNA can cause cancer to develop. Estrogen positive cancer cells feed off of estrogen, tamoxifen blocks the estrogen from binding to the healthy cells as well as to any cancer cells if there were any in my body. This is true for all estrogen positive cancer patients. The estrogen tests won't show any change on tamoxifen because it doesn't stop the production of estrogen. My MO said if I were to do the ovarian suppression shots which shuts down my ovaries as well as my production of estrogen he would do the estrogen levels test to see if the shots were working.

ILSunrise

I'll be starting Tamoxifen in a couple weeks and have already filled the prescription. My MO said I could start right after chemo. However, a couple of my liver enzymes stayed high 6 weeks post chemo and by then I had started rads. My RO recommended I wait until after rads. I have another blood test next Thursday, so we'll see if my ALT and AST are back to normal. If so, then I'll start hormonal therapy mid-May.

Artista928

You can start before or after rads. My MO and RO both said do it after because of the potential se's I may get on Tamox. I didn't want to deal with rads and possible se of Tamox at the same time.

Also just so you know. liver enzymes can remain high long after chemo. I'm over a year out and mine are still high. Some is fatty liver that they found on u/s.

Hope Tamox treats you well. I had to quit Letrozole which was recommended for me since I'm a high risk (beyond what my profile shows) and am blessed that Tamox remained an option since I did/do well on it with just manageable abdominal discomfort now (probably irritating my pre-existing uterine fibroids).

Lordhelpmetoo

Bebe, yes, share your experience. I will be starting the end next month. Hoping for the best

ILSunrise

Artista928 - I had an ultrasound of my abdomen too after the enzymes were still high after the second blood test. They didn't find anything significant (which is good). Wow, really surprised your enzymes remained high that long. Well, I'll see what they are next Thursday since I'm due for another blood test.

So, do most people go the they OB/GYM for a baseline before they start Tamoxifen to see if they have uterine fibroids?

lala1

ILSunrise---I'm one of the ones who insisted on a TVUS but it wasn't until a year into Tamoxifen and only because someone here mentioned it. Turned out I had a thickened lining, ovarian cysts and an enlarged uterus already! We watched it for another 6 months but the cysts stayed the same and the lining thickened even more so I did the total hysterectomy route. Whew! I feel so much better! The best part is no more nausea and bloating and burping which I think was the Tamoxifen irritating those cysts. I also put myself on probiotics which helped tremendously. The joint pain I can live with (with turmeric and ginger's help) but the abdominal crap was something that made me seriously consider quitting the Tamoxifen!

Artista928

I would get a baseline reading before starting Tamox. Before chemo my lining was 6 mm. Got a baseline (and pap/pelvic since I was long overdue) 6 weeks after starting Tamox and it was 4 mm. It's not the fibroids that matter unless you are having discomfort from them if you have them, but how thick the lining is.

When I found out about the 4 fibroids (2 are 3 cm ea while the other 2 of 1 cm ea) I asked about just taking the uterus out. I'm 52, don't need it. Plus it would omit the small chance of getting endometrial or uterine cancer. She said that any procedure has risks so she's not into doing it unless it's very bothersome. With my infection history, and how easy it seems I get infected, I stopped asking.

Also in some other thread there is the same small risk of cancer around that area even if you get your uterus pulled. I think it was ChiSandy who posted this but just can't remember where.

WenchLori

My MO won't let me start until my skin heals completely. He said skin irritation can be one of the SEs of Tamoxifen. Anyone experience problems with your skin?

Artista928

What does he mean by heals completely? I'll be a year out from rads in June and it's discolored, sometimes gets red (is infected right now) and has periodic weird sensations. The rad side most likely won't look like your other side (depending on how many zaps you get), and that's normal. Tamox hasn't effected my skin anywhere. I wanted to start asap but did give myself a couple of weeks after rads for a mental break.

Many people start after chemo, before rads, too. Go with what's comfortable for you.

gardengypsy

I've had no skin problems with the T.

Mom2fourplusmore

My MO put me on Effexor to counteract the symptoms of Tamoxifen. I've been having random shivering (I'm not cold). It happens a lot and sometimes my whole body will shake. But that's not as common for me. I've also been having really vivid dreams. Ha she anyone else hadn't these things happen? Doesn't it go away? Ive been on it for about 2 month so now. Thanks.