Bottle o Tamoxifen
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Solfeo, wow! That's awesome! Congratulations! Out of curiosity, do you use Keto sticks? I lost 40+ pounds over 20 ago by reducing my carb intake, and that's been pretty much my way of eating since.
I think it's near impossible to truly know what the contributing factor is as to why anyone gets breast cancer. I'm 5'7", weigh between 105-110 lbs, and I was 99% er+. My sister also was diagnosed with a high estrogen %, and she had 9% body fat.
Etnasgrl, I was also nervous to start Tamo. I tend to get SE's in general with meds. Plus, I had never been prescribed any medication long term before Tamoxifen. My SE's are limited to night sweats and chills. I didn't connect the chills to Tamo until I came to this thread.
However, I experienced extreme anxiety for around four months after starting this med. I would wake up in the middle of the night with panic attacks, and just felt a constant, overwhelming feeling of anxiety. It's difficult to say whether Tamoxifen was the cause, or circumstances that had nothing to do with the cancer diagnosis, but I've been in many stressful and challenging situations and didn't experience this type of anxiety.
I asked my MO, who's been practicing for over 40 years, and he said it was unlikely that Tamo was the cause. Has anyone else experienced this?
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Anyone notice a difference taking it at bedtime vs in the morning?
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Thanks everyone, for such a warm welcome and for sharing your experiences with Tamox. My period is due to arrive Feb 28th, so my MO suggested waiting until it's over and then begin....so around the first week of March.
My ER was 95%, so it's important for me to stay on Tamox! Hopefully, I won't have too many side effects.0 -
Etnasgirl, I've been on Tamoxifen for 1 month and I take it after breakfast. During the first few weeks I have felt chilly with a little nausea, and while sleeping I get a couple of hot flashes. Drinking ginger lemon tea helps with the nausea. I guess my body has become used to it and I feel ok now. Good luck.
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hsant - Yes, I also feel the anxiety...wasn't really sure if it were the Tamoxifen or just everyting that was happening to me but definitely feel an increase in it - very moody and get upset and weepy for really no reason. I am a pretty strong person who just copes and have never really had that type of feeling so a bit scary and overwhelming. I try to just take a big breath and move on. Exercise helps a lot - also, when I was going through rads and would be so tired, I never missed a day of work. Poeple would tell me I should be home resting but, honestly, working and moving and not sitting around helped me quite a bit. I still get moody and feel anxious at times but knowing what is causing it helps me get through it
one bad boo - I was told to take the Tamoxifen at night as it helps with the nausea. Not sure if that is true but its what I've been doing. Had nausea in the beginning but not anymore. The care navigation nurse said that taking it at night lets you sleep through the nausea. I dont really sleep but sounded good:-) My MO said that any time is fine as long as you remember to take it -that's the real key
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Hello everyone. I am due to start tamoxifen on Tuesday. I am still unsure if I really want to do it though. I was barely ER+. As in 2 oncologist said I was barely over the limit of being er+. My current onc has said it will only give me a 2% extra boost in my cancer not coming back. However, 2% is 2%! Im 4.5 yrs out from diagnosis. I did have chemopause, but my body surprised everyone and bounced back. Now im in menopause and my hair is thinning like crazy and i put on 10 lbs. With the side effects of tamoxifen, I am really not looking forward to starting. I like having hair! Haha
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I have been on tamoxifen for a little over a year, and my SEs have evolved over time. The only ones I've had from the beginning - and still have - are hot flashes and fatigue. Last year, I had nausea, headaches, dizziness, and hair thinning, but not anymore, One addition in the last few months has been these crazy chills before the hot flashes! I felt better after reading this thread and seeing it is fairly common. My hot flashes are not as frequent or intense as they used to be, but the chills can be very intense, especially at night. I pile on the layers, just to throw them off minutes later!
Emotionally, I know that I am more prone to meltdowns and over-reacting to things that probably would not have bothered me before. I have to walk away from situations at work or I'm at risk of getting weepy. This was worse last year, but it's still definitely an issue. I guess it could be menopause as much as the tamoxifen, who knows...
Regarding dosing, I take my tamoxifen every morning, generally at the same time, with breakfast. I use a 7-day pill container to help me remember. This just happens to be the routine that works for me. When my hot flashes were really bad last year, my MO suggested I take half the dose in the morning and half in the evening. I tried this for about 10 days and was totally miserable. Every SE became much worse. I know it's not supposed to work that way, but I do a lot better with once a day dosing.
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Heightened anxiety and panic attacks, along with tinnitus and joint/muscle/bone pain, are side effects of tamoxifen according to my RO. My MO would disagree, but my BS agrees. My oncology counselor also agreed.
My rheumatologist prescribed Vimovo for me. It is naproxen with a stomach medication to prevent gerd. I found it worked very well for the debilitating pain. I no longer have the pain once my ovaries were removed.
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etnasgrl, I was nervous to start taking tamox too, but after ten months or so it's been fine. I was/am in chemopause and was having hot flashes already, so it's hard to say if tamox was contributing to them or not. But they've subsided quite a bit now.
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Cidneyl-I too had dry eyes and pain. Saw the eye doctor who said that my one eye wasn't holding tears like the other eye. I use drops as needed, but the eye pain was more so from what I think was a sinus infection because after having antibiotics for my exchange surgery, the pain went away. I had the pain for months - no fever. The MO was even going to have me have a scan but I kept saying it felt like it was my sinus but no one said I should take an antibiotic.
Chrissie
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RobinLK-- You're the first one I've seen post who's doctor actually said tinnitus was a SE of Tamoxifen! I've been seeing an ENT who just keeps saying allergies. I'm going for a second opinion today so we'll see what he says. I'm pretty sure I may have an ongoing sinus infection so I'm wondering about trying antibiotics. I read recently that your diabetes risk skyrockets with every course of antibiotics so I'm a little afraid to take another dose. However I also don't want an infection just sitting in my brain! But if it's due to Tamoxifen then I'm not so worried. Wonder how you tell which one is the cause? And is there anything I can do about it? I can live with the slightly runny nose but this whistling in my ears is killing me!!
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It's funny because I actually feel like my moodiness has declined a lot since chemopause/Tamoxifen. I don't know it is hormonal or if it is because I am working out more.
I didn't notice the chills got any worse after starting Tamoxifen. I was having them while in chemopause, too.
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Apropos of working out/depression, from today's Medscape:
Exercise, Meditation a Double Threat for Major Depression
Nancy A. Melville
February 18, 2016
A combination of aerobic exercise and focused-attention meditation performed twice weekly significantly improves symptoms of major depressive disorder (MDD) after just 8 weeks, new research shows.
"[We found that] combining these two important behaviors into people's lives might be particularly beneficial," lead author Brandon Alderman, PhD, assistant professor in the Department of Exercise Science at Rutgers University, New Brunswick, New Jersey, told Medscape Medical News.
"The data show meaningful improvements in cognitive function and symptoms of depression," he added.
Meditation and exercise are both commonly recommended for the treatment of depression. However, there have been no studies of the benefits of the two measures combined as a structured intervention, the authors report.
The study was published online February 2 in Translational Psychiatry.
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Ja, the Tamoxifen makes me have leg cramps during exercise as well as at night, so a good warm-up and pre-sleep stretches are useful.
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ksusan,
Do you take magnesium and if yes, how many mg?
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I take 1 tablespoon a day of Natural Vitality Natural Calm magnesium citrate. I seem to absorb it better than I did a basic magnesium citrate pill.
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Pretty pissed off that my Tamoxifen, which I get mail order, is late by 2 days. Just proves my point that I needed an extra month's supply (out of pocket) to accommodate this sort of nonsense without stress.
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Disgusting.
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I'm so sorry you are having trouble with insurance - they have been trouble since day one of my diagnosis - everything is a fight! Thank goodness I keep meticulous notes - my problem is with hospital billing dept and insurance as the hospital as they have been billing me for things that I do not owe and now sent me to collection AFTER I paid the co-pay bills in full on time. The insurance is so delayed that the hospital is putting my money towards the balance owed by insurance which is making other bills unpaid. The insurance would not approve my radiation either and the RO had to fight for weeks which delayed my treatment - was finally approved after he did a peer to peer review - he told me that his first peer to peer was with a psychologist and he was furious - how is that a peer for oncology? He finally got an oncologist to listen to him. So after all my treatments a woman talked to me form the hospital yesterday and told me I have an outstanding balance of $55,000 for radiation for the month of December - what? I do have to pay co-pays for every visit which adds up but not like that. It will be fixed but takes so long and causes issues every time. Isnt it fun to deal with all this when you already don't feel well? One of our problems is that our insurance is out of state - we live in MA but only a few miles from the NY border and my husband works in Albany, NY (about one hour away) so things are not always covered here or we need to get approval -
KSusuan - that's so unfortunate - can they send you a two month supply so you always have extra? Thats what I do here although I pick it up at our pharmacy - so afraid of running short so I keep a small stash:-)
Solfeo - how do you know the dosing for magnesium? I asked our dietician at the cancer center about it and she did not want me on it but I've heard good things - she said my Calcium/D has magnesium in it and she was afraid of me getting too much - I have stomach issues and thought it may help - let me know. Happy weekend all
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Hello friends! As you can see from my sig, I've had the pleasure of visiting many stops on the BC treatment train line, and HT is next - tam for at least a while and then on to AI. I am looking for suggestions of things to ask my MO at our first HT discussion on 2/29. I've been reading the recent posts, and it sounds like you all are well into tam treatment - I appreciate any pointers you care to share. (I am aware of and checking out the content of the HT board for Newbies)
Just FYI re my status: I am 49 and was having very infrequent periods in the 18mos prior to dx, so was already in menopause - having hot flashes and heightened emotional sensitivity. Chemo intensified all of this - hot and cold flashes, night sweats, etc. These have diminished somewhat during rads. I have lost 35lbs since my surgery, and have another 15 to go for goal #1; it will be another 30 beyond that if I want to aim for supermodel status :-). I was 95% for both ER+ and PR+ (and was told this is a good thing as means my cancer will be responsive to HT - some of your comments made me wonder if it is somehow a bad thing?). I am concerned about how bad the tam transition will be for me, especially the mental fogginess (I have a thinking job that requires lots of analytical ability), but my MO says that 70% of the benefit of my TOTAL treatment plan will come from HT, so (*sigh*) I'm resigned to whatever comes with.
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I definitely get the mental fogginess but it comes and goes - I also have a job that requires me to be "on" but, I'm human so..the other day, mail went out without stamps! I have to laugh and move on. I forget names of people I've known for umteen years but, then I remember and move on. I'm more afraid I'll mess something up for my children but, thankfully, theyre 17 and so on top of things so they smile and help me out. As I said, it comes and goes and so far, nothing too bad. Several of the side effects have faded so this may too. Im also on gabapentin which has similar issues so, the two of them together is a perfect storm.
I, too, am 49 but had absolutely no menopause symptoms before any of this. The radiation took the most out of me so far although I would not admit it while going through it and worked every day of treatment - ribs are incredibly sore and I go to the lymphedema clinic for PT for swelling in breast and upper trunk - not bad but they're here so helping me. Not sure if my experience is normal as I started radiation and Tamoxifen within 6 days of one another so was hard to tell what was causing what and the Gabapentin was started the week before all of that.
MorelandKS - like you, Tamoxifen is my defense so, whatever it does to me, sticking with it. My Oncotype was 18, right on the border, so my decision (after a 2nd opinion at Dana Farber) to not have chemo was based on having Tamoxifen for 5-10 years.
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I went with mail order because I wanted to get 3-month supplies. I then learned that my state has for,e a "chemotherapy drug compact" that limits to 1-month refills and for unscientific reasons, Tamoxifen is included. I was planning to switch back to a local pharmacy at the end of this prescription year, but I think I'll do it earlier. The MO's nurse wouldn't write me an extra month's Rx to buy out of pocket in November (I live in an area where the streets don't get cleared quickly, and we're in an earthquake zone and I was updating emergency kits). When I saw the MO, she happily wrote one for me, so I do have extras in the house, but they're a different generic and I'm not happy to switch back and forth and enjoy the side effects of two generics as I switch. I will make a complaint to USPS as well--there might be a barcoding issue, but a 1-3 day first class mailer shouldn't take a week to travel one state over.
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Thank you - I will check it out.
I've also been told not to take anything within two hours of my Tamoxifen so I take my supplements (Calcium/D) in the morning around 7 - I take my Tamox at 5pm and my third Gabapentin of the day after 7pm. The dietician was really only concerned with the Calcium being separate but, after doing so much reading, I decided to separate it all. No one ever told me that Tamox causes constipation but have found out reading here. I take my morning supplement with prune juice which seems to help and I put Benefiber in my morning coffee or tea. I ended up with a colonoscopy and upper endoscopy two weeks ago due to rectal bleeding and not a soul mentioned the Tamox having any effect - I've told everyone I'm on it - love this board for those reasons.
This ride we're on is a constant learning curve
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solfeo. . .don't get me started on insurance, if I didn'nt love MO I would fire the whole group because of the hospital they associate withe who can't get anything right with insurance. Hugs to you, it sux.
Momoftwins. . .I to have been sent to collection not only for something I don't owe, but for something that was never and could never be billed because I had already met maximum OOP last year. Such a waste of time! My trick in addition to notes of everything is to get a senior supervisor on the phone and refuse to deal with anyone else. That way when I call her I remind her about all our previous calls. I can a bigger pest about money than an actual bill collector. I also make her call me back and verify that the problem is fixed.
Morelandks. . .everyone reacts differently to Tamoxifen. That said, I have noto had the mental fog some speak of, I have an intense job and work long hours, then usually try to get to the gym. I too am very ER+ and will likely be on Tamoxifen for 10 years. MO also had me on lupron to put me in menopause but the side effects from the monthly shots were too much for me. Huge kudos for your weight loss. I have managed to maintain but not really lost. My exercise, however, has majorly firmed me up. I'll take that for now.
I'm also on gabapentin which works on my continued nerve pain from BMx and EX as well as hot flashes from Tamox. I take mag citrate in pill for which helps with leg cramps.
Scottie
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Tamoxifen showed up in today's mail, yay. Only 4 days late.
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Hi All, Tamox 5 vs 10 years, and my personal experience.
I posted several months ago about the SE's I was having after 6.5 years on Tamox. I was getting really bad muscle cramps and even muscle tearing when exercising vigorously. I had taken up a running program (Couch to 5K) and I tore a calf muscle. I went to the orthopedist and they said they thought it was Tamox. As I look back on it, I had been tearing muscles the whole time, but really didn't put it together until the calf thing.
In early Aug of last year, I decided to take a break from Tamox. for a while and see if they symptoms of cramping and muscle tearing resolved. All the symptoms went away. Also, vaginal dryness significantly improved. I was able to finish the running program and now run 5K, 3 times a week!
I talked to my Oncologist about this. She told me that after 6.5 years. I had received *most* of the benefit of Tamox, and that given how it was impacting my life, she felt I could stop. I also didn't want to move to an AI as I already have osteopenia (hence the running program to build bone); I've had several friends to into full blown osteoporosis after a year or two on an AI.Onc pointed me to the research of Tamox 5 years vs 10 years and the risks vs benefits. When I first started in 2009, it was recommended you take it for 5 years, and then, it moved to 10 years at some point. I wanted to share the research results because it helped me make the decision to stop after 6.5 years.
Tamox 5 vs 10 years - my personal summary:
- 2.8 percent lower mortality
- 3.7 percent lower recurrence
- 1.5 percent increase in endometrial cancer
- Higher risk of clots the longer you take it.
Given this, I have not started it again and am done. I didn't feel it was worth what I was going through, the impact it was having on my ability to exercise (which is a great thing for reducing your risk of recurrence!) for such small benefits, and also the medical risks.
I know this is a personal decision for everybody, and I am not saying anybody should stop or go or anything. Sharing in case helpful.
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Why is it important to separate calcium and Tamox? I hadn't heard that. I usually take them together in the evening but perhaps should switch that.
I have found that tamox initially caused constipation but it seems to have worked that out. Maybe my body has adjusted.
Still have the night sweats but I had them before tamoxifen so not really sure I can blame that. Otherwise no complaints.
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Neither my pharmacist, PCP,or MO has recommended me taking my meds at different times. Currently taking Calcium (2x per day) Vitamin D3 (2x per day) Tamoxifen (AM), Lovastatin (PM)
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I was told by the dietician to separate Tamoxifen with all other supplements by at least two hours as they can interfere with how the Tamoxifen is absorbed. Perhaps she is wrong but I decided to err on the side of caution...figure, if I'm going to take this little white pill, I'll do whatever I can to be sure it is working. She also told me no grapefruit and no orange peel although my MO, in the same office, said thats not true - again, don't love grapefruit so no problem to avoid. I was drinking lots of orange herbal tea but just switched to other flavors. I think, like in everything, if you ask enough people, you'll get as many answers.
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It IS kind of cool that we can hear all the different MO's ideas on what interferes.
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