Bottle o Tamoxifen
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lala, I've been on tamoxifen since October 2015 and I've been told by other ladies that have dealt with breast cancer that I should have my ovaries removed because a SE of tamoxifen is ovarian cancer. I've talked to my oncologist, radiation doc, gyn, and all have said that the chances are so low, that I do not need to do that. What are your thoughts?
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Melle, I've been on tamoxifen since October 2016 and I've had no SEs at all. I'm really lucky too! And I also take my tamoxifen early in the day so that it doesn't interfere with my sleep. Good luck.
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Mom...I completely agree that many MOs dismiss the SEs of anti hormones. I can't believe that it would be because they never had a patient with SEs since they are so common. However I do think it has something to do with the fact that there are no alternatives. We need to speak up for better treatment options!0
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raqmatt---Tamoxifen definitely increases the risk of reproductive cancers, endometrial cancer being the more common one caused by it. My BS gave me a sheet of stats the day I was diagnosed which said my risk increases approximately 50% on it. That being said, the average woman's risk is just 1% so that means my risk goes to 1.5%. All in all that is a very very low risk. I asked for a baseline TVUS about a year after starting Tamoxifen. My gyn thought it was a silly idea since my risk was so low but she agreed to do it. Surprise surprise...I showed some problems. I had an enlarged uterus, thickened endometrial lining and ovarian cysts. None of this was causing me any problems but I knew I needed to watch it. On the other hand, my gyn promptly "panicked" and said I needed a hysterectomy, and not just a hysterectomy but an abdominal one because that's was my "only option since you've never had kids". Luckily my dad is a doctor and said that didn't sound right so I got a second opinion. (The number one piece of advice from Dad and it's been a lifesaver with every decision!) My new gyn immediately said I wasn't in the dangerous category and when/if I needed one it could be laparoscopically. So we did the watchful waiting. I made it about a year before my lining became too thick for me to be comfortable with and I took the plunge. Had everything taken including ovaries, tubes and cervix. Another good decision! Now I was 52 and perimenopausal so it wasn't much of a shock. The surgery was the easiest of all I had with a very quick recovery. I deal with the mild hot flashes and really don't have any other issues. No more bloating is the best! I feel better now than I ever did before BC and as a bonus I don't have to worry about reproductive cancers (well, I do still get pap smears because I still have a vagina and you can get vaginal cancer). So I guess the moral of my overly long story is to find a really good gyn who you trust (and having a BS and MO you trust helps as well) and listen to them. And regular TVUS will help ease your mind. I didn't think they hurt at all and were very quick. It's just like your eyes.....Tamoxifen can mess with your eyesight so get a baseline exam and just make sure you get regular checkups to keep an eye on things (no pun intended!). Hope this helps.
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Thanks for the great info, Lala.
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lala1, thank you for such valuable information!!
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Just learned about a study done at Tulane which found that nighttime exposure to light, which suppresses melatonin, can make breast cancer resistant to tamoxifen. Even very dim light is problematic (e.g. the light from a digital clock, etc). The researchers stress the importance of either total darkness (using a sleep mask was one recommendation) and/or supplementing with melatonin.
Interestingly, one of the researchers also said that evidence shows tamoxifen is most effective when taken near bedtime, since during the day various pathways that inhibit it are turned on.
Here's a summary of their findings: http://www.nola.com/health/index.ssf/2014/07/breas...
And here's the actual study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41195...
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lala1,
That is great info. Thanks
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I heard about the melatonin issue this past year and immediately bought a silk sleep mask that I use every night. I love it. I sleep really well on Tamoxifen, many times ten hours a night.
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Farmerlucy, do you take your tamoxifen at night?
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No, I take everything in the morning, mainly out of convenience
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farmerlucy--I'm like you I take Tamoxifen in the morning and I also use a sleep mask. I keep my room very dark with only a clock with dim red numbers and I try to keep it cool at around 70-72 degrees. But I also sleep with a fan blowing on me to keep me even cooler. I sleep an easy 8-9 hours a night and have even seen 10 like yourself. I was worried that I'm sleeping too much but maybe it's just good sleeping habits!!
mellee--my holistic cancer doctor stressed the importance of sleeping in a dark room or with a mask. I took melatonin just after my diagnosis when my brain wouldn't turn off but quit after about 6 months on it.
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God, I am so jealous of you great sleepers! I you want to ditch the light of the alarm clock, check out the Echo Dot. You can talk to it and ask it what time it is or tell it to set an alarm for you. No light. When you talk to it, it lights up but if you have your sleep mask on, you don't see it.
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I'm also jealous of the great sleepers. I have to take my Tamoxifen in the morning due to the side effects, but still have trouble sleeping. Some of that is work related but the rest is post BC related. I take 10mg extended release melatonin and still only sleep around 7 hours. I sleep in a dark room with a fan and a portable AC year round.
Scottie
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I wanted to post another thought I had....a couple of days ago I posted my hysterectomy story. One thing I talked about was how my first gyn thought I needed an immediate hysterctomy and that it had to be abdominal since I "hadn't had kids". When I got my second opinion, that gyn did an exam and said I could just watch and wait and I was an excellent candidate for a TLH. Well, he apparently sent a copy of his report to my first gyn. She then called me a couple of weeks later and got a bit angry that I went for a second opinion. I then asked her why she said I had to have an abdominal hysterectomy and she said that it was because she didn't know how to do a lap hysterectomy!! She seriously admitted to me that she had recommended a major operation with "6-8 months" of recovery only because she didn't know how to do it laparoscopically! And that type has a "2 week mostly recovered with back to normal around 2 months" recovery! So my point is just beware. It's a good idea to educated yourself as much as possible on the things doctors want to give/do to you. And second opinions are critical.
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I apologize in advance if this has already been discussed.
Mayne Pharma acquired Tamoxifen from Teva.
Source 1: https://www.maynepharma.com/products/us-products
Source 2: https://www.maynepharma.com/products/us-products/generic-products/generic-products-catalog/tamoxifen-citrate-tabletsIt's not clear if the manufacturing process to create Tamoxifen will change.
Clearly, the use of different "fillers" varies among each manufacturer. These "fillers" are rumored to the source of unpredictable side effects, as many have discussed before.0 -
JohnSmith---I actually called both Teva and Mayne about their Tamoxifen. Both assured me that the formula will stay exactly the same. I can't guarantee it to be true because we all know Big Pharma but that's what the research department at both companies told me. I refilled my latest prescription with the Mayne version and so far (2 months) nothing feels any different.
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I am thinking about giving melatonin a try... I find myself waking up in the wee hour of 4 or 5 & having trouble going back to sleep.
I used to be night owl, and was able to start sleeping earlier during active treatment (before mid-night/ 11:30). But old habit die hard & gradually finding myself staying up later again. Work on sleeping earilier, THEN my work schedule changed (working afternoons until 9pm); and I find myself too wired to go to sleep before mid-night (right now maybe 12:30/1am). STILL waking up sometimes in the middle of the night...
I am trying to do things that I can - no coffee after 3pm, set alarm in the evening to start winding down. music. What have you ladies had tried?
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Tried just about everything. Completely dark room. Black sleep mask. Not letting myself get too cold which results in hot flash. I am beginning to think I am just never going to sleep again. I wake up at 12:30 (thanks to my husband snoring), go in the guest room, wake up again at 2, 3:30, 5 and than have to get up at 6:15. I can go back to sleep on weekends but I like to work out at 9:30 so I can't sleep too late and even if I had time, I wouldn't be able to.
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When I first began Tamoxifen, I had terrible lower back ache. It subsided & I'm not sure if it's related, but I've noticed a lingering though not brutal lower back pain.
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Does anyone have a guess which fillers are the culprit in the various generics?
It's interesting because more recently on this thread, many people have said they do better on Teva. However, on an older thread on this forum, most of the women preferred Watson. They postulated it was because Teva has more fillers (8) than Watson (5).
As for the Watson brand, the only ingredient it has that isn't in Teva is microcrystalline cellulose (unless there's a significant difference between corn starch and pregelatinized corn starch). So that would have to be the culprit for those who don't do well on it. However, when I've looked it up, it seems to be a pretty innocuous (and extremely common) filler in pharmaceuticals and vitamins. It's so inert, that it's often used as a placebo in research studies. It's not absorbed in the body, so even in rare cases of allergic reactions, the symptoms are limited to gastrointestinal issues such as diarrhea and gas.
I fully believe those who feel worse on Watson, so I'm just trying to puzzle it out. Any pharmaceutical experts here who can guess what is going on?
FYI: I've seen some who found out that the lactose is causing them problems, but lactose is in all US generics (apparently in Canada there is a version without it).
Teva Inactive Ingredients:
- croscarmellose sodium
- hypromellose 2910 (5 mPa.s)
- lactose monohydrate
- magnesium stearate
- polyethylene glycol 400
- povidone k30
- corn starch
- titanium dioxide
Watson Inactive Ingredients:
- croscarmellose sodium
- lactose monohydrate
- magnesium stearate
- microcrystalline cellulose
- pregelatinized corn starch
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Maybe it's missing ingredients?
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Allison, is your sleep disrupted by hot flashes, or does tamoxifen just keep you awake?
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superius, I take 3mg melatonin before I go to bed because I often have trouble getting my brain to shut down to go to sleep. I have also bought melatonin in a chewable to keep by my bedside for when I wake up in the middle of the night and can't get back to sleep so I don't have to get up to take a pill which will make me even more awake. You might try that.
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superius - I take 10 mg melatonin, benefryl, gabapentin at around 9 pm. I wear a sleep mask and use ear plugs. When I go out of town or have some reason that I know I'll have more than usual trouble getting to sleep, I take 10mg Ambien and skip the Benedryl and melatonin.
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I am not sure if the hot flashes are waking me up or not. It's not the Tamoxifen. I haven't taken any in 3 weeks. I was taking xanax during my entire treatment and had weaned myself off it. I quit taking it a few weeks ago and wasn't sleeping that bad but now I just can't seem to get more than a hour or two at a time. I am going to start taking Tamoxifen again. I quit taking it because of the muscle cramps in my upper arms. While they seem to have improve a bit, I don't want to start the other drugs. I am going to try the co q 10.
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Allison, I wonder if you're having rebound insomnia from the Xanax withdrawal. It's very common, even if you gradually taper. It should get better with time. I'm currently tapering off a very low dose of Valium that I've been taking for just over 2 months and even that is messing with my sleep. Like you, I go to sleep without difficulty, but wake up multiple times during the night.
I got a few recommendations from others who have withdrawn from benzodiazepines and found them to be helpful:
Hyland's Calmes Forte - very calming (if anxiety is an issue) and also makes you sleepy
Magnesium glycinate - good for sleep and anxiety and as an added bonus, also helps with joint pain/muscle cramps
Melatonin - go for an extended release version, if staying asleep is the main problem
Lactium (a good source is Swanson Women's Anti-Stress Formula) - this also helps with sleep and gentle anxiety reliefMy husband, who has always struggled with insomnia is a big fan of Calmes Forte too. He also swears by Mid-Nite (which has melatonin, plus some other sleep-supporting ingredients), both when going to bed and when he wakes up in the middle of the night.
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kansas1118 - I think the tamoxifen gives me a more sensitive lower back (in my sacro-iliac joint). It is more inclined to flare up and be achy. I cannot say it is the drug for sure, I don't have joint aches elsewhere. I take painkillers when need, use a heated cushion and try to do some exercises I found on Youtube for relieving then strengthening your sacro-iliac joints, sort of works.
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Hi Scottiemom, does Tamoxifen making sleeping hard? I have a bottle of it on my desk and have not taken it yet. I feel petrified. I have been a wack job since I had my ovaries removed and am afraid I will get even worse on Tamox.
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I am still trying to find out if my hot flashes are night sweats from tamafloxin or my diabetes. the diabetic low blood sugar symptoms for me are dizziness, bad vision, and confusion. is that how the tam hhot flashes or night sweats are?
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