Bottle o Tamoxifen
Comments
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You can take lexapro and celexa with tamox. I'm taking celexa and have been given lexapro when it wasn't available in the hospital. I would never go back on effexor again. THE worst se's and long too when slowly weening off of it.
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My friend had terrible withdrawals from Paxil--took her a year to wean off of it, and she went through some really strange mood changes and brain zaps. Effexor sounds like another "strong" SSRI like Paxil. I am not sure how the SSRIs differ from each other. They all sound pretty similar but Lexapro and Celexa seem easier to tolerate from the reviews I've read.
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They are often known as the easiest to tolerate. I've been on meds since '95. Tried a lot. Finally settled on celexa or lexapro--along with anxiety meds. Paxil is one not to be taken with Tamox. Somewhere in here is a link to what psych meds highly interfere with T.
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Interesting how some SSRIs are okay with Tamoxifen and some are not, but they are in the same overall family. I think the Lexapro is making me nauseated. I may cut the pill in half to 5mg.
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Mollie: I believe 100% that the muscle issues are Tamoxifen. I have been off it a few times for various surgeries and the muscle pain stops every time. My MO took me off of it once to see and sure enough, the muscle pain stopped. I don't know why she too me off to it to see. She just put me back on it. I guess she was trying to prove I was wrong. But I knew that's what it was all along.
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I am also having pain on Tamoxifen this 2nd go round on it.(had ovaries removed and went from Tamoxifen to Armidex to Femara now back on Tamoxifen) I am wondering if the Mylan brand is the culprit where before I was on Teva and Watson brands.
Anyone try Clariton to help with the pains?
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ndgrrl...the ovary removal will probably add more menopause symptoms that have nothing to do with meds. You had more estrogen in your system to be used by those cells that are not blocked by Tamoxifen such as your bones. I wouldn't expect to feel the same going back to Tamoxifen as a result, because you aren't the same this time!
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EastcoastTS---I'm taking Tamoxifen and turmeric. My MO researched it thoroughly and decided he was fine with it. I think I may be his first patient to have ever asked! And he's been practicing for decades! Turmeric was a lifesaver for me. Without it, I don't think I could have stayed on Tamoxifen due to the muscle/joint pain. I'd say once I started it, I went from a pain of about 6-7/10 to about a 1-2/10. I also checked with my holistic doc, gyn and BS and everyone was ok with me taking it.
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Katcar- You can take 1/2 in the am and 1/2 in the am to see if it helps with nausea. If you're taking it on an empty stomach maybe try eating something first.
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Singin-me:
Same here, I have been taking Tamoxifen for almost 2 years and just lately feel so exhausted. I could go to sleep any time of he day, but the afternoon is the worst. Concentrating at work has also become a problem. I try to eat healthy, avoiding sugar and eating my veggies. I take Biotin and maybe need to add some Vitamin B12.
Oh, and I'm also turning 48 soon
Steffi
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Lala1:
My alternative MO (who is two-time BC survivor) recommended Turmeric and a naturopath has as well! I think my "main" MO would poo-poo researching any supplements. Lucky you. Idk. At my next visit (I'm still kinda new to this but not to supplements! ha ha) I'll ask her.
I also take some other goodies if anyone is ever interested. I guess that actually goes over on the alternative forum. I've always been a bit of a supplement hound.
Did you get tested for Tamoxifen metabolization? Endoxifen, is that it?
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Wow. After reading all of this, perhaps its not the Tamoxifen, but the effexor causing all the side effects. My MO recently lowered the dosage because I asked to be weaned off. I just couldn't do it. I am sticking to my "lower" dose but will check with him at my Aug appt. I will also ask about Tamoxifen metabolization! Since diagnosis, he has not even drawn a vial of blood from me. I ask EVERY time. I am also going to add Tumeric and B12. Maybe that will help.
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I've never been tested for Tamoxifen metabolization? I just figured it must be working because I have SEs and no recurrrence (so far!). I'm doing pretty good on it but in Sept I'll find out what my next five year step is when I do the BCI test.
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Well, I'm on my third month of Tamox (I know that's very early) and I have experienced no SEs yet really. Of course, then I worry about whether it's working! LOL I did take a test for metabolization that someone here gave me the info for (Kaikos??) -- it was $99 and an oral swab. You do have to list a doctor but they send results to both you and Dr. I'm sure my MO was like: what the heck? But it's better she get the idea of how I manage things! Ha ha. However, I asked the Johns Hopkins "Ask An Expert" nurse (she's great) and she said to ask them about the blood test at next appt if I have no SEs. I know some don't but it must be so many that DO if she suggests to check that I'm metabolizing it. My oral swab said yes.
I exercise (in moderation, I'm not a junkie) and also take Magnesium aside from the normal stuff supplements. All of that may help with SEs. I've heard that iCool is good for hot flashes. I have yet to have one.
However, I will say that I think I've already entered menopause -- I was peri for a few years and hormone levels seem to say "almost there". So maybe I had SEs before (sleep issues, etc.) and it's just rolling along now. That could be it. Idk.
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Lala- Can I ask you what dosage of Tumeric you take and what kind? My MO told me it was up to me if I wanted to take it. She leaves everything up to me such as aspirin when I asked if I should be taking a baby aspirin with Tamoxifen- she said I could if I wanted, no that I should.
Thanks
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I take Gaia turmeric with black pepper from vitamin shoppe. It's much cheaper through amazon online though. Has really helped my severe hip pain from taking the tamoxife
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Has anyone had erratic and frequent periods after coming off Tamoxifen? Quick rundown of my situation-I have a Mirena IUD and started having some bleeding more often and heavier than my once a quarter super light period I was having. Went to OB/GYN for yearly checkup and ended up diagnosed with BC. A BMX with immediate DIEP flap recon later I'm put on Tamoxifen and MO says not to remove mirena as it would help protect against possible uterine cancer SE. Period goes back to its quarterly arrival. Had to discontinue Tamoxifen 2.5 months later as it was causing DVT and bilateral pulmonary emboli and now have to take Xarelto ("smart" blood thinner). I get my period - it's heavier than usual and lasts all week. 2 weeks later I get it again. Then 1.5 weeks later again. What is up with that? Anyone have this happen to them after stopping Tamoxifen? I have an appointment with MO next week and I'll be sure to ask him but hoping you ladies would have some goodinsight in the meantime😬
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I get my daily tumeric via a couple cups of organic Tumeric Ginger Tea after dinner. Special brew by the amazing online tea company The Art of Tea, they name the variety Bright Eyed! http://www.artoftea.com/tea/collections/wellness-c...
Not only is it delicious but also very good for you! Ginger and Tumeric (with little black pepper to activate) and cinnamon are the ingredients.
Since giving up wine and alcohol since my BC diagnosis, I've taken up hot tea drinking and have to say this tea is so delicious that I find myself enjoying it like I used to a nice glass of wine! Never thought I'd say that!
Cheers.
jp
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Thanks, JP! I'm going to try the tea.
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ndgrrl--I also take the Gaia turmeric ( I think it says extra strength on the box). I buy it from Amazon since it's cheaper than Vitamin Shoppe. My holistic doc gave me these instructions: Take 1 capsule (500mg) a day for a month. If you get relief, continue with that dosage. If you don't get relief, go to 2 capsules a day. If you get relief, continue with that dosage. If you don't, then it's probably not going to work for you.
As to aspirin, my MO told me from day one to take a daily baby aspirin with Tamoxifen since it has a known SLIGHT risk of blood clots. On a daily aspirin, I bruised so easily! I could rest my chin in my hand and get a bruise! So he said go to twice a week....that all docs feel twice a week works just as well as daily without the severe bruising. He also makes me take a good quality fish oil to help prevent blood clots. So far, so good!
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Has anyone experienced different/worse SE after stopping and then starting Tamoxifen?
I stopped for about 5 weeks for my exchange surgery.
My MO wanted to try to determine which of my symptoms were coming from tamoxifen.
I have been taking again for 2 weeks.
My emotions are on overdrive, cry easily, seem more anxious and on edge, lack of focus and feel nauseous.
I also still have my original ones, insomnia, leg cramps, mild hot flashes.
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I've been on Tamoxifen since February. I know it hasn't been that long, but I'm still having major menopause symptoms from this medication. I get hot flashes and night sweats. I don't sleep very well. That may be why I'm fatigued all the time. I'm also taking Herceptin every 3 weeks until the end of the year. Does anyone have swollen ankles? I've been getting that too. Maybe it's the combination of the Herceptin and Tamoxifen.
Oh, and let's not forget weight gain. I swear that I gain about 2 lbs. every 3 weeks (when they weigh me in at the infusion center). I want to exercise more, but can't after my recent surgery. I had an L5-L1 discectomy because it was pinching my sciatic nerve. The sciatica pain is gone, but my leg is still numb. The nerve is still healing. I'm also going through lymphedema therapy for my breast, and I'm getting fitted for one of those flexitouch pumps next week. There are just too many appointments (before work or after work). I'm all pooped out by the end of the day.
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I am on my third month of Tamoxifen after 7 weeks of Rads, no chemo. I am post menopausal (taking it because of osteopenia), and the hot flashes have come back with a vengeance. Also experiencing accelerated hair loss. I can deal with the hot flashes, but I am concerned about the hair loss. I don't see my MO until October. I am on Tamox for 10 years. Anyone else having hair loss issues?
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Hi kirsar!
I'm not sure I can blame the hair loss completely on tamoxifen, but it really seemed to accelerate after about six months on the medication. I spoke with my oncologist and he supported trying Rogaine. It's a commitment. My issues were mainly in the front and temples. I will know if it's working by the end of summer. I also use a hair loss prevention shampoo. That seems to have reduced the diffuse loss substantially.
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I had accelerated hair loss for about 6 to 8 months. I started taking biotin and it slowed considerably. I have more brittle hair, but I cut off the biotin and the hair loss hasn't worsened.
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Hi Pi-Xi, my loss is in the front hairline as well. I was losing hair prior to my diagnosis, but no where near at the rate I am pulling hair out of the shower drain now. Globs of them. I don't think I can use Rogaine as I also have liver issues. I don't want to go off this as they are telling me it is the best choice for me. 0 -
Yes, be wary of Rogaine as some does go in your system via the blood supply in your scalp.
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I have hair shedding problems also. Never had thick hair but this is disheartening. It's so thinned out behind my right ear, I do a Donald Trump comb over. Also, it grows very slowly. I had a haircut and told her not to cut the hair on the right side the same as the left side....it's taking forever to grow back out. Maybe 1-1/2 inches a year. Does anyone else have severely dry skin that takes forever to heal if you get a cut/scratch/abrasion?
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blownaway - I had scary dry skin on Tamoxifen, like a mummy, and severely dry skin on my, ahem, vulva and other private parts to the point where I had cracks and pain. No hair issues other than dryness. I have been off Tamoxifen for two weeks. Still have ear ringing, but withdrawals seem better, and I am sleeping better and not feeling so emotional. Have taken 7 Anastrozole pills so far and will transition over to that forum. So far, so good--no SEs other than bearable hot flashes. Do worry if I am truly in menopause or not. Will be getting hormones tested next week. Just could not get an accurate reading whileon Tamoxifen.
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Well, I now have a new a wonderful side effect from Tamoxifen, like i didn't already have enough! So here's my list of side effects to date and I now have been on the wonderful pill for 5.6 years.
Hot flashes, night sweats, mood swings (oh the rage at times, lol) bone and joint pain, muscle pain, stiffness, blurred vision, insomnia, hypertriglyceridemia (my new side effect), thickening of my uterus and a mass causing me to have a total hysterectomy and under no circumstances can I change brand of Tamoxifen.
When I went to the oncologist last he asked so still have hot flashes told him yes and listed the others I was still having he looked at me and said, well Tamoxifen is still working, and he chuckled. He seems to think my body is processing it well which is why the long list and some rare side effects. And he definitely believes that each brand has different side effects which I TOTALLY agree.
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