Bottle o Tamoxifen
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A new questions, I've just finished up 2.5 years of Tamoxifen and am going to switch to an AI. My MO recommended I take a week's "medication vacation" between the two. Have been off Tamoxifen just a couple of days and woke this morning with every joint in my body aching. Got myself out of the house for my morning walk but my three miles took me 10 minutes longer than usual. I also just stopped DIM supplements that I had been on as part of a clinical study so that could be part of the picture. Anyone else have SE when stopping Tamoxifen? I'm ready to head back to the bottle!
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I just finished my five years of Tamoxifen recently and slowly weaned myself off it taking about
a month to do so.
So far I haven't notice any ill effects whatsoever.
Hope this helps. Maybe it was caused by something else.
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Weaning off is a good idea! I may go buy some DIM too.
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Esil, thanks so much for your response. I have been having therapy since surgery. I've gone to a PT, OT and massage therapist. I think the massage has helped me the most. I got my range of motion back within six weeks by lifting weights, but nothing I do is pain free. Most of my pain is in my side/back area where my drains were. It's been six months, I just can't imagine being pain free again. The only time it doesn't bother me is laying down, so that's a blessing. Kim
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Stenokim - is your PT doing anything to break up the scar tissue around your drain sites? This is what my PT did a few months, and the results have been nothing short of miraculous. I have not had pain in drain sites since. The PT sessions to break up the scar tissue were excrutiating, but so worth it in the long run.
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Wondering if anyone knows the answer to a couple of questions about Tamoxifen. First, shouldn't we be taking a calcium supplement? My vitamin only has 500 mg and my oncologist didn't mention extra calcium. Second, I am 45 and have already had a hysterectomy but we just assumed I was not menopausal yet. Should we be doing labwork to make sure I am not menopausal at some point in the next 5 years on Tamoxifen? Thanks
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bethq Have you had a bone scan? If your bone density is good you might not need calcium other than what you consume in your normal diet. I am 51 years old and I get a bone density test every year, because I have osteopenia, borderline osteoporosis.
I had and ablation when I was in my 30's, because I had frequent bleeding. After the ablation my periods went away, so I had no idea if I was menopausal or not. I had been getting hot flushes since I was in my early 40's so I assumed I was. Every year my oncologist orders a blood test and 2 levels are tested: FSH, and LH. Based on those results, I am not menopausal yet. Since AIs are not good for the bones, I am happy to continue taking Tamoxifen for now.
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I've not had a bone scan. Maybe when I see the oncologist in a couple months I will ask and also ask for the blood work. I've had hot flashes at night for years but judging from the monthly breast tenderness/moodiness prior to the mastectomy I thought I was not menopausal yet.
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As I'm reading this I have my first f/u today one month from starting Tami. This week has been all about insomnia, I wake up about every 3 hours. However, beth and islandgirl I have to stop by the lab right before my appointment so they are running bloodwork, not sure what though? I just turned 47 was 46 was dx'd and definitely not in menopause. I had a partial hyst 7 years ago, but still have my ovaries and they still seem to be young at heart
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I just saw this article on NY Daily news about tamoxifen gel, makes me think.....
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VERY BIG WOO_HOO!!
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Bethq, If your only 45 you only need 1000 mg of CA a day.And that includes what you get in your diet.I counsel women on bone health daily since I'm a bone density tech.Tamoxofin mimics itself as estrogen so it's actually not going to cause you bone loss.But Arimidex does.Also chemo.Walking, climbing stairs and weight resistance helps build your bones.Menopause will be the time most bone loss occurs and can occur several years after menopause begins.
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Josie thank you so much for that! I actually went to the grocery tonight to purchase extra calcium and just looked at the bottle and I got Vitamin C!
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bayou babe, she's just recently started working the drain site area. Did you have a lot of pain there also? Just always feels severely bruised. I agree it doesn't feel good, but I always feel better when I leave, but then it ends up flaring back up. I'm going at 11 tomorrow, so I'll have her work on the drain site area. Thanks so much, and I'll take any more advice you may have. Kim
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Bethq, your very welcome.
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Hi Josie! :-)
I have also heard that one bright spot of tamoxifen is that it actually supports your bones ... Nice to have an upside of this medication.
I woke up early this morning experiencing the worst charley horse of my life in my left calf muscle. It was horrible. The muscle now feels very sore, like it was torn. But at least it's not spasm'ing anymore. Apparently muscle cramps are a known side effect of tamoxifen. I've had charley horses in my feet on occasion (but they also occurred before I started tamoxifen over a year ago).
I'm going to a natural vitamin store today to purchase a magnesium supplement to see if it helps. Josie, I know you're not a doctor, but do you think I should take calcium with the mag? I will also ask the staff at the store -- they're very knowledgable (it's an independent store, not like a GNC-type chain).
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Gemini, I would be interested to find out about the magnesium and calcium intake. I am taking magnesium for constipation to counteract the calcium causing that problem. Thanks for sharing!
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I've been taking 500mg of Nature's Bounty (no soy!) magnesium per day for the cramping and it has worked wonders! I still get them, on occasion, but rarely. I'm also taking a 600 mg calcium supplement (Caltrate) even though I am still pre-menopausal. I don't care for dairy products.
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Being that I have hyperparathyroidism (high calcium in blood) and had a parathyroid gland w/benign tumor removed in 2002 (before BC)...I certainly hesitate to ever recommend that others take calcium supplements. I'd definitely defer to blood labs (not necessarily doctor orders, sorry!). I do know I was severely vitamin D deficient, so I do take 5,000ius of Vitamin D3 daily.As far as magnesium...:O :O :O!!!! Boy does THAT go thru me like craaaazy! (Read: diarrhea immediately!) Good that some people CAN take it...:)
Tamoxifen has caused a whole world of side effects, that just seem to keep on 'giving'. BUT that said, I don't believe I'd ever go without having had it in my treatment plan. I did take it for 3 years (was also 46 and pre-menopausal before chemo), then went on to take Aromasin for 2 years.
It's been since 2006 for the chemo, since 2007 to 2012 for the tamox & aromasin. I still have severe hot flashes/sweating. Probably due to being now 55 and being in 'real' post-menopause. (Labs definitely show post)
BEST to all of you just starting these treatments~~! ~juli
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Leg cramps, feet cramps, toe cramps...terrible, and I take magnisium, always have. I think Tamoxifen is the culprit....
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My MO suggested an "old" remedy. He said they used to prescribe quinine for cramps. While they don't do that any more, tonic water has quinine in it. I drink that and my leg cramps have pretty much gone away. Need to stay hydrated too. My potassium and calcium intake is good.
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Wow. I just realized I do have a side effect from tamoxifen. It's the calf cramps! I've been getting them, mostly in the morning in bed, but once I get up and move around, they're gone. I did get one Charlie horse, too. I also eat a banana when I wake up, so maybe that's what helps it. If that's my only SE, I'll take it. The cramps aren't that bad.
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Gemini, yes Magnesium helps you absorb the calcium.No I'm not a Doctor but have learned a lot from doctors.Our nurse practitioner always recommends calcium and magnesium.I don't remember the dose of magnesium.
I read something about leg cramps the other day.I read that when you get a leg cramp its really your muscle being starved for hydration.They recommend drinking a glass of water before going to bed.Not sure if it's true but it can't hurt.
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On the advice of my MO, I started taking one calcium magnesium cap with a full glass of water every evening. I could hardly believe what a quick difference it made in relieving the almost nightly severe leg and foot cramps. The caps have 500 mg calcium and 250 mg magnesium. Taking it at night isimportant since the body doesn't retain calcium I was told. Country Life is the brand I chose since they are gluten free with no soy, milk or preservatives added; but I think there are a variety of brands.
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about the gel version of tamoxifen:
that would prevent local / regional recurrence, but what about distance recurrences? If the tamoxifen is only protecting the cells in your breast area . . . There are lots if other places left unattended, right?
I wonder if they would even recommend this for women who've had BMX?
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Hello, it's my first time on this thread. I have a few questions that I hope the wise women of Tamoxifen can answer
1. Is it better to take Tamoxifen in the morning or at night? Also - my ONC said that Tamoxifen could be taken before and during menopause, but I've seen some comments here that indicate otherwise.
2. When do the SE of Tamoxifen start? If there are no SE after, say, a few months - does this mean there probably won't be any?
Thanks!
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I think it can be taken either time. My MO initially prescribed 10 mg Tamoxifen two times per day so I took it morning and night (he feels it decreases initial side effects for some women). I liked taking it twice a day so continued with that prescription when he offered to have me move to the 20 mg once a day.
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ladies, thanks for posting! I am coming up on starting my 3rd month of T. So far, only night sweats/hot flashes now and then. Keeping my fingers crossed.
I take my T in the morning. One tab 20mg.
I still seem to require more sleep than pre-chemo, but not getting it with insomnia. Other than that, I am doing great!
Whoever asked about who should take it, I think for post menopausal they try to go with the Al, but in my case, I have bone loss, so starting on T, then may switch in a couple yrs, depending on my bone density at that time. I'm sure it depends on other factors also, such as heart disease, etc.
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HI,Does anyone know if Tamoxifen causes sun sensitivity?
Thanks
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ok, 2 things first I have been able to get the Mylan brand tamoxifen again!! and second the last 3 or 4 months I have notice I get nose bleeds at least a couple of times a month. Has anyone else experienced this?
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