Bottle o Tamoxifen
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I was 49 and no months when I started Tamoxifen, and I wasn't even close to menapause. I have nowu been on it for two years and the SEs are manageable. The worst of the SEs were from Lupron shots which I was one for 8 months or so. I take magnesium, ginger, turmeric with bioperene, fish oil and other supplements which control the muscle pain and HFs. The lupron stopped my cycles and they haven't come back for 16 months.
Scottie.
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lala, interesting article. Thank you for sharing!
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BlueKoala: Welcome to my world. I have just about had it trying to figure out what is causing what.
I feel as though the best thing I can do is focus on alleviating symptoms. I am going to see a naturopath who specializes in oncology to help me deal with various effects.
Peace to all.
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gardengyspy, I have actually just come home from a follow up at oncology and she recommended taking it at night to see if that makes a difference
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gardengypsy---my naturopath was a godsend for me. He has helped me figure out supplements for all my Tamoxifen SEs. I wish insurance would pay for everyone to see one.
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What's the amount of mangesium that is working for hot flashes? My 400 isn't working well.
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I've just started taking Tamoxifen and very helpful to keep track of this thread! So far my only side effect has been fatigue (I think) and a little bloating .... although it's hard to gauge fatigue because I have 3 kids - so basically I've been fatigued since 2004
However, one thing I'm trying today is cutting the pill in half and taking one half in the morning one half in the evening. My prescription packet says that this is recommended for doses higher than 20 mg (which mine is not - it's 20 mg), but I figured just spreading it out over the day could help with distributing any possible side effects. Plus drinking lots of water and staying as active as possible.
So we'll see if this helps.
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Sportsee--
So to start I take the Gaia turmeric for joint pain at the recommendation of my naturalist doc. He said he's visited the place it's made in NC and it's produced very cleanly. And it has the all important black pepper already in it. This is how he said to take it......
Start with one capsule a day and take for a month. If you see an improvement in your pain level, then continue on that dose. If you don't, then increase to 2 capsules a day for a month. If that helps, then take that dose for a few months then try weaning down to 1 a day. If 2 a day doesn't help, then it probably won't work for you and you can try another brand of turmeric but be sure it has the black pepper in it.
Just for full info....he also suggested I take ginger with my turmeric every day. He said both are good anti-inflammatories so both will help the joints (they are both good for your heart too as an added bonus). I try to take a good brand like Nature's Way or something and I take 1 capsule a day of 500mg.
As to the magnesium, yes I do take it as well. I actually take 2 different types. One is SloMag, which I buy at Walmart. It's magnesium chloride and does a great job with constipation. I take 2 tablets every morning and no longer have all the bloating and constipation issues from Tamoxifen. I also take Kal Magnesium Glycinate 400 which I buy off Amazon. I take one capsule of that each night which helps with joint and muscle pain and also seems to help reduce my hot flashes.
I also take 5000IU of Vitamin D and a good fish oil that has at least 1000mg of DHA/EHA both of which my doc said would help with joint and muscle pain from Tamoxifen (as well as the good fish oil helps to keep the possibility of blood clots at bay). I also take a multivitamin daily and a baby aspirin twice a week (once a day was too much for me. I would bruise too easily.) And because I have on and off sinus issues, I take olive leaf extract which has all but eliminated those issues as well as stopping the periodic colds I would get. And last but not least, I take a probiotic....a good one called Primadolphius Optima from Vitamin Shoppe. Totally knocked out my Tamoxifen induced nausea!
Between all of these, I do really well. I exercise every day and while I definitely have more pain than i did before Tamoxifen, it's totally doable. And I'm thinking because my pain is less I find that I now sleep very well which I believe then helps me feel better overall. Hope this helps!
Oh, and by the way, seems I read somewhere that you should not split Tamoxifen in half. It's one of those pills that they can't guarantee the important stuff is spread evenly throughout the pill or something. Anyone else heard this?
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Great info - thanks for sharing Lala1! I'll be sure and check with my doctor on cutting the Tamoxifenin half too!
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The supplements you've got listed align with everything I know, Lala and Scottie.
I am going to bring the Tumeric up to 2 capsules.
I have a serious aversion to fish. I may have to do capsules, even though they are not supposed to be as good as regular oil.
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BlueKoala~ I am going to take a break. I want to see if I am having all the SEs for reasons other than Tamoxifen - chemo, PTSD, neuropathy, etc..
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I am thinking of taking a break, too. My SE's (hot flashes and arm cramps) are keeping me from sleeping. Seeing my doctor today. She kept saying my arm cramps were not related to Tamoxifen because they were only on one side. Well, now they are on both sides. I can't even roll over in bed without the pain.
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Tavler....so sorry you are suffering. I'm so tired of hearing about MOs not validating the SEs of anti hormone treatment. Just try to speak up and stand your ground. We need better treatment options!
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After months of no leg cramps and minimal hot flashes, they're all back and bigger than ever! I think it's because I had to switch pharmacies which means a different brand of tamoxifen. So I'm stuck with a 90-day supply of a weird brand that isn't Mylan, Teva, or Actavis. Mylan (blue bottle) was treating me well. Now no amount or type of magnesium is helping with the leg cramps! I also feel sadder more often, but that might be from things other than Tamoxifen.
Otherwise, I'm feeling fine. I might be due to switch to an AI sometime this year depending on my DEXA scan. I've been taking all kinds of supplements since neither doctor wanted to start me on osteoporosis treatment. I'm hoping there is a positive change or at least stability!
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Although I now understand that women on Tamoxifen should not take cymbalta since it reduces the efficacy of Tamoxifen, I am still taking both and seeing new onco soon. I plan to ask if a stronger dosage of Tamoxifen might offset the effects of cymbalta on tamoxifen.
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Saw my MO today and told her about arm cramps and hot flashes keeping me awake. She says to take a two week break and then we will reevaluate.
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I took a 2 month break and none of my pain went away. I had been blaming a lot of it on Tamoxifen.
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Hi all,
Because of my osteoarthritis issues, my MO decided that tamoxifen would be a better drug for me than the AIs, despite the fact that I'm about 6 years into menopause.
Since I (regrettably) took HRT for several years, the worst of menopause may already be past. When I stopped the HRT cold turkey in October, I really haven't had any symptoms (hot flashes).
Has anyone else been prescribed Tamoxifen instead of AIs when well into menopause? If so, what was your experience (SEs, etc.)?
Thanks!
Carrie
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swapped to taking the pill at night and it has made a world of differ
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BlueKoala~ That's great news!
Carrie~ Yes, I was post-menopausal. Because of concerns about osteoporosis in my family, my onc prescribed Tamoxifen. She also said that the SEs would be easier.
However, when I look at the BCO comparison chart, it says that the Tamoxifen has more SEs than a few of theAIs!
Anyone care to comment on this chart!?
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I was 52 and pre menopausal. Have been taking Tamoxifen for almost a year. SE's were so bad I halved the dose to 10mg. The night sweats are still just as bad and wake me up about every 2 hours throughout the night so I am always tired.
Has anyone been on Tamoxifen long enough to get through the SE's - particularly the night sweats or are we stuck with them fr as long as we take the stuff.?
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I don't think that chart is all that accurate. First SE listed is joint pain and it says Tamoxifen doesn't cause it. I would have to disagree, as I'm sure many other would also. I had pretty bad joint and muscle pain on Tamoxifen but through exercise and supplements have it nicely under control. My BS told me when we discussed swapping to an AI (I'm 2 years out from a total hysterectomy so post menopausal) that in his experience the joint pain is experienced by most everyone but that it seems to be a lot worse on the AIs. He said there are so many options, just try something and if it works, keep on with it. I was started on Tamoxifen due to being pre meno but I think I'm just going to stay on it since I do well on it. After I do the BCI test next year (I'll be 5 years post diagnosis) I may rethink which drug but I'm pretty sure I'll stay on something--it just makes me feel like I have a safety net--unless the test says I'm better off taking nothing at all.
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I'll chime in - have been on Tamox for more than 2 years. I thought I was doing well with the Teva (now Mayne) generic, but decided to try Watson about 5 months ago, then last month went back to Mayne -I realized that I have certain side effects that are specific to manufacturer. I plan on returning to Watson. The side effects I am dealing with are not major, but it was like a light bulb went off when I realized that my itchy elbows were back! I have to attribute it to the switch. I think anyone struggling with side effects might consider trying different manufacturers before giving up. The other tough issue is that many of us are in the mid 40's to min 50's age range, when we would be going through natural menopause. So how can we be sure that our side effects are tamox vs. menopause? Although I worry about tamox altering my body's ability to shift into menopause....
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lala~ That chart seemed "off" to me, as well. But I have trusted BCO. We should ask the mods about the source.
The discussion about the different fillers and manufacturers reminds me of the chemo-induced neuropathy and other problems. Many SEs can be attributed to the delivery rugs.
These medicines take a toll.
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I'm planning to start Tamoxifen soon. Saw the MO last week for consult. She wants to see how I do for a few months on it. So appreciate you all pointing out different SEs with different drug manufacturers. I'll remember that.
Interesting change in last two weeks. I'd had night sweats a couple of years ago. I'm 53 now. Went away when I increased my exercise and included Pilates. Started again one month after my MX. But the flashes feel different this time. sudden Onset. Occur Every 2 hours throughout the night and I wake up just as it starts. It's like someone turned the menopause switch to "on" and I haven't started the Tamoxifen yet!
Trying magnesium - hope it helps!
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What does "delivery drugs" mean?
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Blownaway
"Drug delivery refers to approaches, formulations, technologies, and systems for transporting a pharmaceutical compound in the body as needed to safely achieve its desired therapeutic effect."
-Wikipedia
I am waiting for some articles from this pharmacist. Her specialty area is delivery drugs. She asserts that the drug companies could do much, much better in creating cancer medicine that doesn't cause as many SEs. She said they are lazy and making too much money of what they use now.
#blownawaytoo
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I have a question......has anyone asked their prescribing doctor how long it takes for Tamoxifen to be completely out of the body's system? I know that some women are told to stop Tamoxifen 2 wks. prior to surgery, but that is not what I am referring to. If necessary, please PM me if you want to remain a quiet reader (like I usually am).
I have been on Tamoxifen for six yrs. thinking about a vacation from it but have two different opinions from onco docs.0
