Bottle o Tamoxifen
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runner81 - I recently had my tamoxifen brand switched on me by Walgreens. They changed me over from teva to mylan and while at first it freaked me out, it has been an amazing change for my hot flashes. Like, I can have a drink or a coffee now without having 2-4 hours of hot flashes as "punishment." I'd hesitated to switch brands even though many on here had had some improvement that way, but now wish I'd done it sooner.
I started to have awful, raging pms-associated anxiety (like nothing I'd ever had before tamoxifen) and resolved it about 80% better with a daily calcium-mag-zinc supplement. I'm not sure if it applies to you, but there's some evidence calcium supplements can help with pms for some people. The mag also helped a lot with my post-chemo muscle aches.
As for the vaginal atrophy, mine was awful with deep fissures and lots of pain even sitting or walking, never mind anything recreational! Turns out part of it was an atypical yeast infection (with none of the usual symptoms) due to weird hormone imbalances from tamoxifen. My gyn says this weird presentation happens and a course of oral anti-yeast medicine, in combination with this amazing stuff called "Rebecca's vaginal salve" by an online company called "women's intimate solutions" have literally changed my life
. It sucks how mostly we're left to figure this out on our own. Hope some of the above might help!Edited for clarity and typos
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For depression/anxiety, I've been on all the well known ones. I came in to this with this gift to begin with. Effexor for me was the worst. I stayed on it too long and when I wanted to quit it and move to another one (because if I didn't take by 3 pm I'd feel very sick), I felt like I had flu. Horrid and would never recommend it to anyone as the risk of it happening alone was too much for me. I think it took a couple months before I became back to normal. It takes awhile for the drug to leave your system. It's a pretty common complaint so just a heads up in case you decide to go on it. It may or may not happen to you but heads up what many experience going off it.
I'm on Celexa and have been for a few years now. It works pretty good for depression and anxiety. And it doesn't interfere with Tamoxifen which is something you want to check before starting.
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dctexas- I started Tamox exactly a week ago too. Seems it'll be awhile before we feel SEs, if any. Some folks don't have anything major or at all. I'd wait until you see how you do and if you can bear it without assistance. I used to be into essential oils and such and it really wound up not really helping. Just my opinion as before you know it, you have a collection of stuff that you may not use---like me.
I did the buy this in case before chemo and have quite of collection of unopened items.0 -
Thanks, @artista928. I already use oils quite a bit and have for years. It's just one more tool in the tool chest
. I have friends who had no SEs as well so I'm definitely praying for that. Hope that's the case for you too!0 -
"My PCP was not helpful either. She said she would never prescribe something without okay from the oncologist. She pretty much told me to buy some Astrogel and that's it. When I persisted in my complaints to her, she said something like, "Yes, but they got you all fixed up, it's a small price to pay." I wanted to say, I've paid a lot of prices and I'm pretty mad that cancer has made me have to live like this. But you know how other people just don't get it. I'm sure you all can relate. Thank you for taking time to respond to me.
"There comes a time when you have to speak up and say it like it is. If I'd have accepted the Doctors recommendations when I had my brain tumour, I'd likely have a paralysed face and all the related side effects along with breast cancer. Isn't that a wonderful thought.
If you think you need counselling or psychological support insist on it. I'm not sure what your insurance covers but please please please, be your own advocate. Only you know how you feel and sometimes you have to punch your doctor in the face with it.
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Dctexas, my MO said not to use anything estrogenic--like lavender. From what I can tell, the citrus oils are the "safest" estrogen wise, but I keep meaning to do more research. As for Progessence Plus, I have heard it pushes estrogen out of the breast, but I cannot confirm that. I think Thieves is estrogenic, but I also don't know if diffusing it makes a difference (versus skin or oral usage). So, currently I use citrus oils however I like, diffuse something I "need" but am unsure about, and avoid the riskier oils until I take the time to research them.
If you learn something new please share.0 -
Wait . . . no lavender?!
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Interesting, musosgirl. I hadn't heard anything about Lavender being estrogenic. I was worried about things like P Plus, Lady S, etc. but I'll have to do some reading on those. Just a quick Google search shows there's some research with connections but it looks like they didn't use 100% pure lavender oil. More reading to be done for sure. I don't see my MO for 3 months so it sounds like I need to call his nurse. Thanks!
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My hair started dropping significantly about 2-3 months ago. I've been on Tamo for almost 2 years. Now have extremely thin hair on top and above right ear and all over thinning generally. After chemo, it came back thicker than its ever been but now I'm thinking of getting a hair piece of some sort, couldn't stand a wig in this heat. Did this happen to anyone else?
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https://www.mskcc.org/cancer-care/integrative-medi...
I really like the memorial Sloan Kettering site for herbs and supplements. I do use one product with lavender but it is the last ingredient and have chosen to do it sparingly, after trying lots of other options. Another ingredient I was surprised by was hops, which are also estrogenic I have seen in some natural deodorants and some other topical products.
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Blownaway---My hair isn't necessarily "thinning" but it's definitely changed! My hair is very fine and thin already and super straight. Now it has these swirls and curls but only on one side. My hairdresser is really surprised at the change. Keeping in mind I didn't have chemo or rads so it must be the Tamoxifen. I got my hair cut last week and the girl (who is different because I'm away from home for the summer) commented on how different the texture of my hair was on the one "weird" side versus the "normal" side. It's totally making me crazy! I have added Biotin which I'm hoping will just make it all go back to normal but not sure it's making a difference yet.
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Lvbugs, I too started having nail problems recently. I didn't have chemo and I really think it's a SE from the Tamoxifen or the change in hormones caused by it. I've been on it about a year now. I get worried I'm not going to have anything left as they chip and tear very easily, which means they get really short, which is a problem in itself. I wrote on one of these boards about it and someone recommend a product called Healthy Hoof. I bought it on Amazon for about $6. I do think it is helping. I've been putting it on my cuticles at bedtime and (when I remember) in the morning.
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dctexas, a friend just sent me this link on ProPlus:
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I second what Kate said! no lavender!?
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I was told/or read (chemo brain and that was months ago) that lavender is high in estrogens. I have avoided it in all my soaps and lotions too
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Runner: Might be time to find some new doctors. I hate it when doctors act like you should be grateful they saved your life but your quality of life is meaningless. My doctor is ok with topical estrogen. I am not at that point yet. I have been on Tamoxifen for 6 months now and I had my second surgery in April so we are just starting to dip our toes back in the water, so to speak.
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guess my next stick of Tom's deodorant would not be the lavender scented one. >p
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ORgal, thank you for the info on Healthy Hoof. I'll definitely look into it.
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Thanks floaton and musosgirl for the links. I use body soap with Lavender and never would have thought of that connection. I definitely need to call my MO.
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Hi ladies! I've been off & on Tamoxifen since April 2013. I've had the typical brain fog and leg cramps at night/am. In spring of 2015 my Achilles started bothering me when I switched to flat shoes in warmer weather. After resorting to PT, not much change. I took a break from Tamoxifen and my tendonitis felt better, swelling went way down. Hmmmmmmmm.....Went back on Tamoxifen and my tendon got worse. The big reason for the break from Tamo was bleeding and having two biopsies for uterine cancer. (Negative thankfully!). In the middle of May I woke up to upper right quadrant abdominal pain. Dr. did exam, blood tests, ct scan. My liver enzymes are elevated, I have a cyst on my liver and my liver is inflamed. It's time for my labs to be redone. I stopped Tamoxifen again in June so I could start biking again. There's not much change in my tendonitis yet. I was telling my sister about all of this yesterday looking up liver disease on Google and much to my surprise saw Tamoxifen therapy as a cause of liver disease!!! WTF???? Since when??? Today I found this forum to see if anyone else has had an issue with their liver on Tamoxifen and I saw someone posted about eye changes. (My right eye changed -1.50 from my last exam, only my right eye.) I'm afraid to ask what vaginal atrophy is...#sosickofthisshit Of course I started bleeding again after going off of Tamoxifen. At 53, menopause was too good to be true. (Mirena, where are you?, I miss you!) I will not be going back on Tamoxifen and I'm completely fine with it. We'll see what happens with my next labs. Anyone else?
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I've been on tamoxifen since April. No major side effects, in fact my night sweats are better!! But Myright eye got worse too! Eye dr did all tests which came back fine. Told me to tell oncologist.
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Hi. All -
I know that I haven't been on here for a while, but something weird is going on. I had a Tamoxifen break from mid January 2016 to beginning of April. When I had blood levels drawn for another reason, by mistake, the Tamoxifen level was drawn - well the estradoil was only 5.8. Now in time for my medical oncology appointment, the levels were redrawn but this time the estradiol level is 633. This has everyone stymied. The oncologist is trying to consult with other clinicians. I am very worried because with the estrogen level that high that could be dangerous because my cancer is ER+. I really don't think that the Tamoxifen is working well enough to outweigh the emotional problems I have from it.
My appointment is next Wednesday - and I just started a new job yesterday after 4 months of unemployment. I don't want anything to create a major disruption in my life.
MarieBernice6234
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MarieBernice---I also had my estrodial levels go really high on Tamoxifen. Mine was 700!! But my gyn wasn't the least bit worried. He said Tamoxifen does that quite often with estrodial levels but not any of the other levels they test like FSH or something. He did decide to put me on a regular schedule of TVUS to keep an eye on my endometrial lining. I was fine for a while but it really started to get thick along with ovarian cysts and fibroids so I ended up doing a total hysterectomy about 18 months ago. I was pretty panicked about the whole menopause thing but it ended up being one of my better decisions. I did it laparoscopically and it was an easy recovery and at least now I don't have to worry about the whole endo cancer/Tamoxifen thing. Anyway, my point is just that my MO and gyn both weren't concerned at all with the sky high estrodial levels.
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is anyone's side effects getting WORSE as time goes on? It has been a year for me on tamoxifen and most of the physical side effects are better but the mental issues are getting increasingly worse by the week. I haven't slept longer than three hours a night in over a week. I'm having severe night time panic attacks and some bad anxiety throughout the day. My doctor prescribed Lexapro which I will begin soon. I am hoping I get some relief. I've been taking low dose Xanax at night to try and help get a few hours. Just wanted to see if this could possibly be tamoxifen related or a total fluke?
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shelleym1----I just wanted to mention to you what my BS said to me during my recon process. He told me that he felt most people came through this with PTSD and that he feels it's not recognized enough by doctors. He requested that I spread out my various doctor visits over the year so that a doctor was seeing me every couple of months...one, to do an actual breast exam and two, to check how I was doing mentally. He was very emphatic that if at any point I felt anxious or depressed to please call him or any of my other docs and let them know. I had difficulty sleeping at first and was afraid to be alone, especially at night, for the longest time. I ended up joining a program at my local gym that is a physician referred program for people coming back from cancer or other severe injuries or illnesses. It was one of my better decision because I found a type of support group that was concerned with my well-being. It didn't involve meetings, just more of a group of physical therapist keeping an eye on me as I recovered. It's a tough part of this process that the end of treatment is the hardest part because you feel adrift. My BS swears that most of us have some form of PTSD. So this may be something you could consider.
Also, one thing my BS suggested for me that helped was to take melatonin for a while. I took a very tiny dose (0.3mg) for a couple of months till I found a kind of structure with my sleeping and then I weaned off it. Haven't had trouble since. Also, regular exercise and yoga (both of which I wouldn't have gone anywhere near before BC!) seem to help as well with the anxiety and sleep. This way I didn't have to go on any Rx drugs.
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I was on lexapro before I started tamoxifen. I truly feel it is helping me get through everything and keeping anxiety down.
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I just came home from my hair salon and he said "your hair is thinning". I have noticed that there is more hair in my brush, and in the shower. Is this a Tamoxifen side effect?
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I think hair thinning can be a side effect of Tamoxifen.
It is also a side effect of hypothyroidism. My endo was concerned about radiation affecting my thyroid function-something the ROs often don't seem to tell us about (mine did not). A simple blood test to check your thyroid might be in order just in case.
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shellym, lexapro is definitely not ok with tamoxifen!
https://www.drugs.com/interactions-check.php?drug_...,1013-565
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Runner. . .have you considered consulting with a second MO? Mine takes all of these factors into account. She has looked up everything I had a question about while I was there if she did not already have an answer and she has been very open to alternatives that keep me on Tamox, such as Gabapentin which also works on my persistent nerve pain from BMX and the HFs. She also looked up the ovarian cysts link as I'm prone to them and approved each of my supplements - mag citrate, mag glycinate, turmeric, ginger, biotin for skin and nails etc. . .We have even discussed a safe amount of soy protein since I'm vegetarian. I had to cut back on that one.
Exercise does help too.
As for sleep, I have taken melatonin for years and recently started 10mg timed release. I sleep okay now as long as I eat a very light dinner. If my body is trying to digest something heavy, such as the yummy dinner out I had yesterday, I have a mm iserable night.
Scottie
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