Bottle o Tamoxifen
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Same edj. I'm not a freaking pharmacy. I already have to take thyroid hormone, and more recently something for high blood pressure. Now this crap. Enough already. But, those may be famous last words.
FindingOptimism, I'm so glad you've found relief. My husband is on gabapentin for chronic back pain due to a bulged disc or something from years of running. Can i ask how it helps your side effects please?
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I will start with my agreement that I abhorred the thought of taking one pill to offset another. With each side effect I have incurred, I have tried to alleviate the side effects and given it a fixed period of time to resolve. With the alternative being the increased risk, I felt like I should give it my best effort. Gabapentin has helped with the night sweats and insomnia. I think, in my case, it eliminates/lessens the night sweats which in turn keeps me from waking up regularly.
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I completely understand FindingOptimism and can see myself doing the exact same thing. Hoping I won't have to
That is so good to know about the gabapentin. I had no idea! Thanks for sharing.
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After three years with horrible SEs on Arimedix, I switched to Tamox mid-May...I am taking a low dose 5 or 10 a day, my Rx is for 10 a day...so far I'm okay and when I saw the MO after two months on Tamox and said I was still low dosing, he was fine.
"Some is better than none."
So find the dose that you can tolerate. TT
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FindingOptimism thank you for sharing about the gabapentin. Like mom2bunky I didn't really know how it's used, so I appreciate that a lot.
I'm already going to be going on Prolia next month, assuming my insurance company doesn't deny that. Ugh. Did I mention I also hate needles?
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I was on Femara for 5 years (started May 2006 and was to scared to give it up after 5 years! Doctor switched me to Tamoxifen 20mg once a day (for the past 8 years). Total time = over 13 years. I call it the anti-cancer voodoo medication..but the side effects are just becoming overwhelming to my body. I want to ease out of taking the medication by reducing to 10 mg daily for I don't know how long. Any ideas or suggestions?
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I'm with those of you who don't want to take pills to get rid of side effects from other pills.
In addition to the joint pain / fatigue type side effects, I'm also scared of the ones that just appear without creeping up - blood clots, uterine cancer, vision issues, etc.
I'm still doing 10 mg / day. I did take an extra 10 mg twice to get up to the full dose in my system faster. With a 7 day (or 7 to 10 day) half life, it takes a while to build up in the system.
I might take an extra tomorrow or the next day to work towards getting 15 mg average in my system.
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Azcatcus I have been on Tamoxifen 20 mg for 7 years now. I never went to Femara or Arnidex due to the joint issues. I would think 10 years total for both drugs should be efficient. I know I am stopping at 10 years. I have never lowered my dose but I understand women who do. Perhaps a talk with your doctor might help.
TrimTab - I would think the theory is something is better than nothing indeed. Women tolerate this drug at the level they can handle.
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hi everyone,
Have been on tamoxifen for almost 2.5 months. Muscle/bone/joint pain doesn’t seem to be getting better. Appt in 2 weeks to ask MO for different brand. In the meantime, anything I can take or do for joint/ bone pain? It’s increasingly difficult to walk and has only been just over 2 months.
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I started on Tamoxifen 4 weeks ago after trying all 3 of the aromatase inhibitors. I am having total knee replacement in 5 weeks and am debating whether to go off the tamoxifen for a few weeks until I am able to be more mobile, maybe 2-3 weeks after the surgery. I am on a baby aspirin daily but with the risk of blood clots and stroke on the tamoxifen and risk of blood clots after knee replacement I am getting scared. Any advice. My doctor thinks it will be fine since I'm on the baby aspirin but at 71 years old the increased risk of stroke has me worried.
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Angel, with me the joint pain eventually eased off, but it took a long time. Many months. I was worst in bed and when I first got up in the morning but it quickly improved as I moved around. I found that my ankles and lower shins were weirdly stiff and felt like the muscles were locked up. Again, I just worked through it and after many months it got better. I know it's not very helpful or supportive to say hang in there when you're feeling so miserable. Magnesium, calcium, epsom salt baths, plenty of liquids... the basic things to try. Sorry to not be more helpful. Fingers crossed that things get better sooner rather than later.
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thanks runor. I’ll try to be patient with SE’s. I’m having a difficult time adjusting to tamoxifen. Hopefully, will start feeling better soon
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Hi Goldfish4884, Did your ortho doctor think the aspirin was enough? Ask the doctor if you will have to have Lovenox injections after your surgery to prevent blood clots. I had a meniscus tear and waited a month before starting Tamoxifen. There was definitely more discomfort once I started the Tamoxifen. Rehab is so important. Good luck with your surgery.
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Runor - I hadn't heard the epsom salt bath recommendation before. Will try to remember it if I have increased joint issues as I up my dosage. You may feel that your post wasn't that helpful, but for at least some of us who are starting to get some of the side effects, it does help to know that they might get better before we stop taking the drug in 5 or more years.
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Angie, I'm having a tough time adjusting also. I'm glad we have this place to vent.
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runor: your post helped me! I have the weird ankle thing in the mornings too... one trip down the steps and it's resolved, but walking TO the steps and the first few are quite ... stiff.....! When even an innocent mosquito bite makes me fear cancer spread (my life now? constant fear?), knowing someone else has my exact same weird symptom eases my anxiety! ; )
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goldfish- I’ve posted this before, hope it helps!
https://www.sciencedirect.com/science/article/pii/S174391911200091X
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Thanks flashlight and peachy mom for your replies. I think I will just stop the Tamoxifen 3 weeks before surgery and wait until 3 weeks after to restart it. It's so hard to get a straight answer between the orthopedic surgeon and the oncologist so I think I will just do what I am comfortable with. I will ask about the Lovenox and whether I should continue with the baby aspirin. Thanks again.
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Umakemehappy ... how you are feeling, like every little thing might be cancer, is very typical of the 'process' that many of us seem to go through. Someone much wiser than me posted on BCORG about The Two Week Rule. A cough, a hip pain, an eyeball twitch, a weird blotch or lump, two weeks. Watch it for two weeks. If it hasn't improved or gone away in two weeks then it's time for a trip to the doctor. That has been a very sensible and do-able piece of advice. It gave me parameters to rein in the panic and the sudden hypochondria, which I hated and resented but seemed to be as much a side effect of cancer as my joints aching and an armpit that doesn't grow hair anymore. I hate what a spastic idiot I've become. It feels like I'm running to the doctor flapping my arms and yelling The sky is falling, The sky is falling! I think he must roll his eyes and sigh at the sight of me. But then I think, hey, no one held a gun to his head and made him be a doctor, if he didn't want to deal with spastic people he should have become a garbage man or ditch mower. It's not my fault that he's a doctor and not my fault that I got cancer so it's just a dog's breakfast all around. What are you going to do?
DorothyB, epsom salts are loaded with magnesium. Your skin, being your biggest organ and being pourous, is an efficient absorber of magnesium presented in this way. Magnesium is a known helper for muscle cramps and aches. HOWEVER... I should make a few things clear. In order for the epsom salt bath to have any effect at all it must be done according to a specific method. 1) Light scented candles and place around the room. 2)pour a tall glass of wine and place safely on the fattest edge of the tub. 3) a really good book 4) a big smile as you settle into the hot water to soak, sip and read.
To spice it up a little I buy essential oils or body safe fragrance oils and add a few drops to a bowl of epsom salts. I smush this around with a fork until the scented oil is good and mixed into the salt. If I'm feeling fancy I add a few drops of neon food colouring and smush that with a fork. Dump this all into a pretty container and keep near the tub. I find the scent of lavender or citrus and pine or cloves (pick your fave) really makes it fun and the burst of colour (which immediately fades) as I sprinkle the salt under the running water makes me smile. When the kid was small and hated baths I'd let her pick what colour bath she wanted and dump in a few drops of food colour. Made bath time more fun and less fight. Like, what can't be solved with hot water, salt and food colouring?
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Runor, you really do have a way with words and articulate exactly how I feel about this nightmare. Before all this, aside from the obligatory annual GYN visit, I never went to the docs, for anything. Since cancer, I freak out at every little ache and pain(which are most likely caused by the evil tamoxifen). I worry about my MO thinking I'm a nut job who calls for every little thing(though I haven't actually had to call for anything yet). It's almost like just when I've been worried sick for a certain amount of time, enough to stress me out and cause insane lack of sleep from said stress, the ache pain starts to dissipate. I feel at times like the universe is playing with me. I guess payback for 46 perfectly healthy years..
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Angie, I've had the muscle/joint aches and pains and cramps and twitches and general mild flu-like feeling since shortly after starting the prescription. A magnesium supplement seems to help; at least, I have fewer symptoms when I remember to take it, and they come back when I forget about it for a few days. I take it in the form of magnesium glycinate, which some sources say is better absorbed than other forms.
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Just stopping by, doing a search on leg cramps from the evil white pill, anastrazole. Runor, thank you for that picture in my mind with Epsom salts and wine. You do have a way of helping us cope! Thank you. PurpleCat, I do love your picture still, and my mag glycinate should be here Thursday, I cannot wait! I have chronic diarrhea with Perjeta and it seems to actually have gotten worse with Slow-Mag since I started this. Hoping to switch and put an end to the all-day bathroom, and return to just mornings. Hugs with love to all you warrior women. Keep us smiling, Runor, thank you.
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purplecat, thank you.
Took some magnesium today and it seems to help a little. If taking daily magnesium supplement, what is the recommended mg? And for how long should I keep taking it?
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When I started taking Tamoxifen, my MO gave me a prescription for 520 mg magnesium to take every night before going to bed.
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MissouriCat--Over the last almost 7 years since diagnosis, I've been trying all types of magnesium to see which one does what for me. One thing I can tell based on MY experience is that Slo Mag is the one to take if you're constipated! Definitely not the one if you're dealing with diarrhea! And I tried a strongly recommended magnesium citrate which I felt did nothing for me. Not for a good poop or to help with muscle and joint pain from Tamoxfen. But give me a KAL magnesium glycinate tablet and all is right with the world! I makes me regular and it my body just feels great on it. Don't know why that's the one that works for me but it is. Having said that, every once in a while I swap to the Slo Mag just to really clear me out which I'm feeling particularly stopped up. I take it for a couple of weeks then go back the the KAL and am usually good to go for months. So crazy how the different magnesiums work different ways but I'd definitely think about taking a different kind at least for now for you!
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A high absorption magnesium is best to prevent GI upset. Magnesium citrate or a chelated magnesium (magnesium glycinate) are supposed to be the best. I take a chelated magnesium (Doctor's Best brand). I started taking it years before breast cancer diagnosis and treatment. I find it does help with tamoxifen induced night leg and foot twitches/cramps. I take 200-400 mg/day.
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Everyone needs to find the magnesium that works for them. Magnesium citrate often is used for constipation. I buy a large bottle of Costco's Nature Made, extra strength 400mg Magnesium, in a softgel form. This also dissolves quickly in the stomach for rapid absorption. My doctor suggested I take one after dinner and this dose has been working for me. Try a small bottle and see which one works best for you. It definitely has made a difference.
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I take Nature's Way Complex Citrate blend, has magnesium as citrate/oxide. I take two capsules before bed, it works for me for regularity and leg cramps.
Now I just need to figure out how to get my hair back. I went to the dermo doctor, I am losing my hair due to the tamoxifen. She recommended Nioxin or Keranique. I am trying Nioxin. Just stared coming out in in February, 5-8 strands a day since then. You can see my scalp but it is all over and not subject to one spot.
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Hi Lomlin, I just had a conversation with my hairdresser about my hair. I know it's thinning. I used to only be able to wrap a hair tie around my hair twice and it was difficult on the second wrap, now i can wrap it four times! Fortunately, I started off with exceptionally thick hair. It is not noticeable to anyone else, yet, but I am wondering if it will continue to get thinner.
Since radiation and tamoxifen I feel like a crazy person. I don’t know if my hip pain is joint pain from tamoxifen or just from age. Although, I don’t see many 54 year olds having difficulty walking when they get up from a chair. Then there’s the fatique, it was terrible when I started Tamoxifen. I now take Provigil on weekends, when I remember, because if I take it too late I won’t sleep, and Concerta during the week for work because i was having difficulty with concentration.
The hot flashes and night sweats are a killer!! I am in a study where i get accupuncture twice a week for ten weeks but it’s not really helping, maybe a little at night but I get so embarrrased when I have sweat rolling down my face at work or when I am out with people.
I feel fortunate that I “only” had DCIS, I know there are many people who have far worse diagnoses so I feel like I really shouldn’t complain but I never had these issues prior to Tamoxifen. The good news is that this whole experience has made me think about eating better and exercising more and I have lost 23 pounds!
Sorry to hijack your post. I started typing and just couldn't stop! Enjoy the rest of the weekend everyone
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Lewhy, I just started Tamoxifen on Aug 1st and am building up slowly, so haven't had all of the side effects yet. I am up to almost 12 mg / day steady level in my body. The metabolite builds up more slowly and I am over 10 1/3 mg steady level. The worst side effect so far for me has been nausea when I took anything over 10 mg. I backed off trying to add extra for several days and am now taking an extra 5 mg every other evening. Last night was the second time. So far, going OK.
Anyway, I see you had DCIS. How many mg of tamoxifen does your dr have you on? Studies have been done that say that lower doses are just as effective for DCIS (can't remember if ER / HER2 status matters)
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