Bottle o Tamoxifen
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Vargadoll, there are many things that can cause dizziness. I have frequent dizziness, well, not dizziness, more like the beginning few milliseconds of weirdness before you pass out. Not like spinning in circles dizzy, just a weird sensation in my head as if all the lights are about to go out. This is because I have some stupid heart palpitation thing and every now and then, well quite often actually, the old ticker stops ticking and takes a break, as I feel like I am losing consciousness. I never have lost consciousness. After a second or two of not beating it starts again with a mighty thump. Annoying as hell! Some days this is an ongoing occurrence. Others days it doesn't bother me at all. I have never figured out why. But I had it my whole life and tamoxifen has not made it any worse.
I think if you have this dizziness as a regularly occuring thing over two weeks or so then it would be reasonable to wonder if it's the tamoxifen. But a transient moment of dizzy / faint can be caused by so many things and tamox is not likley at the top of that list. BUt do watch to see if this continues over time. If it does...then you have some investigating to do. Hope it doesn't happen anymore! Anything that happens when I'm driving is pure panic, the last thing I would ever want to do is hurt someone else with my bad driving.
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Paco - I also quit tamoxifen after 7 months because I developed ovarian cysts and now have high liver enzymes. I am seeing a GI doctor to address this issue as I am now having swelling issues and a small amount of blood in my urine with no other signs of UTI. If it isn't one thing its another. Jada
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Hi, I’ve been on tamoxifen for almost 3 years. I’ve randomly started having severe hot flashes. At night I can’t sleep because I will drench the bed. I get them during the day too but at night I can’t sleep because of them. I literally drench the bed. Is this normal to start after 3 years? Any suggestions on how to help control them so I can sleep? I’m exhausted. Thank
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2.5 years of Tamoxifen I still get hot flashes but not as intense or frequent. I find that if I exercise daily, the are much less. Also not drinking alcohol/wine has helped a lot. That said, my female docs highly recommend a natural plant based pill called Relizen...made for flower pollen out of Sweden and used by European women for years.. It's non hormonal and okay with Tamoxifen. Also non-prescription and relatively affordable.
Hope it helps! Hot flashes are the worst!!
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jpBCfree, thanks for the info. I haven’t gotten hot flashes up to this point. It’s a lovely, not so much, new side effect. How long did it take to subside?
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Maybe about a year into Tamoxifen they lessened -- although by then I was really focused on lifestyle like daily yoga and/or walking, no alcohol and plant based diet. My surgeon published a book called the Breast Manual (Dr. Kristi Funk) and I read it and started following her suggestions on breast health (and non recurrence) and all those things were part of it. So, not sure if less intense hot flashes were adjusting to tamoxifen or the changes. I kinda think the lifestyle changes as I believe that I lowered my circulating estrogen naturally-- so less high/low swings of estrogen which is what they think may trigger hot flashes. Before, I used to get them every how and literally sweat dripping off my brow-- so embarrassing when in work meetings ! People asking me if I was okay...thank goodness that is over!!
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I was hoping to see if I could switch tamoxifen out with something else, but my MO prefers that I wait a bit longer to make sure that I'm really post-menopausal. I just have to stick it out and power through.
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Princessbuttercup, I’m in the same process, waiting on my bloodwork now. Not convinced that I want to switch because it seems like the alternative seems to have more or worse side effects but I know that can be different for each person. My MO said it would only be 5 years on this other med though so that would be nice. Tough decision. The devil you know kinda thing
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Hi, ThreeC, and a hug to you, too! What an interesting week...switched back to Aromasin and got some sleep. Today, bone pain is back in droves. Can’t use hands very well. Sigh. I now have an Rx for 7.5 mg of Remeron and 5 mg of Ambien (not CR). GP said use the Remeron on days I don’t have to be up early and Ambien on days I do (works quick and wears off; Remeron tends to hang around). Maybe I’ll try 10 mg of Tamoxifen. Or try to get pain management to help. I have an hour drive to work each way and busy crazy days, so no sleep and bone pain are not good. I tried Cymbalta—a nightmare experience (I know it can be very helpful), and I’ve used Gabapentin in the past (also rough/can’t take). FP said to try CBD oil, so I’ve got it on order. How are you?
Dee
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Is it normal to have muscle twitches with tamoxifen? I’ve had them for years and I’m accustomed to them, in my eyelid and other places, but they’ve gotten about 10 times worse since I started this prescription. I’ve been taking magnesium to fight off leg and foot cramps, another long time symptom made worse by tamoxifen, and the twitches and cramps seem worse when I don’t take it, so I guess it’s working. Now I just happened to look in the bathroom mirror and noticed that I can visibly see my pulse in my neck. I don’t remember that ever happening before, although I’ve seen it in my stomach on occasion. Can anyone else relate to these weird things?
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So I chickened out on the Tamoxifen. I was amped up for the first 3 or 4 days, then about day 5 I started getting really angry at everything and everyone, and not being the best mom. I was yelling a lot, which I hardly ever do, unless it's something serious or someone is getting hurt or something. Then I got really down in the dumps, I mean bad. I could hardly function normally around people. I was just so depressed. So what a first week. So I stopped taking it, and I'm going to talk to my doctor. I'm already on meds for depression and anxiety, so maybe that's why it went that way for me. I'm going to talk to my psychiatrist, too. One of the meds I take for depression is a strong inhibitor for Tamoxifen I read, so I'm not sure it was going to do anything for me anyway. Are there alternatives? What's better...living being miserable or taking the chance that odds are my cancer will come back eventually? I feel like I need to have a lot of conversations with my doctors, also because a lot of what I read here I don't even know about. I just did as I was told. I think I'm slowly coming out of denial that lasted up until 3 weeks after radiation, when I was done with all treatment. I want to be proactive now, but I don't know what questions to ask. I guess I need to do some research and figure out what's best for me.
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Hey CarrieSt.,
My antidepressant (Wellbutrin) was contraindicated for Tamoxifen. My MO offered me the choice of doing ovarian suppression and an aromatase inhibitor if it was important to me to stay on Wellbutrin.
I ended up switching to Lexapro and starting Tamoxifen. I gotta say, the lexapro has been great for my mood.
I will say that I had a lot of short duration side effects when I first started the tamoxifen - they would last a couple of days and then peter out. The one side effect that is still bothering me hadn't even started until about a month in.
So it might be worth either playing with your depression meds or trying to stick out the tamoxifen or both. I was told my a friend who was on it that she used medical support to manage bothersome side effects during the first year, but after a year or so her body seemed to adapt. So my plan is to try to stick it out for at least a year. After that, my plan B is OS+AI. I think my plan C would be just stopping the endocrine therapy. That scares me a lot and I'd rather not, but it is always an option.
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I've been taking Tamoxifen for only a month now. I was having hot flashes before starting it but once I started taking Tamo they are even worse, especially at night, I wake up drenched with sweat. My doctor advised me to buy AM/PM for menopause and it does seem to be helping. I only woke up once with major hot flashes the last couple of nights, that's promising because before it was every hour. I ordered it from Amazon.
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I woke up 4 times last night. I don't think it was due to the Tamoxifen but it did make it difficult to get back to sleep as I was hotcold. In other words, I'd be cold, and then I would be hot before I was done being cold.
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I asked my oncologist for xanax for anxiety, I take it at night and I am out for the night, I can sleep well.
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Astyanax, Glad to hear you are able to get some much needed sleep. Driving an hour to work on little or no sleep sounds scary! The bone &/or muscle pain just seems to stalk us... My DH and I try to work together to do projects around our property instead of going to a gym. We pressure-washed our dock, put on a new coat of protectant and replaced any wood that was iffy. As a team, we finished the job. Then I was too sore to do anything else for days! I thought about switching from 20mg of Tamoxifen to 10mg.... just to see if the side effects lessen, but mentally it scares me to lower the dosage. I have too much fear of a recurrence. Let us know how the CBD oil works. I've been considering trying it.
PurpleCat, Don't know if muscle twitches are a SE of Tamoxifen, but they are a possible SE of a magnesium deficiency. I lost my Thyroids & Parathyroids due to Thyroid Cancer. Deficiencies in calcium and magnesium were a result. If my eyes twitch(usually low magnesium) or my muscles cramp up(usually low calcium). I know I need to add more to my daily doses. There are many causes for electrolyte imbalances. You might get your Primary care Dr to check your levels. Abnormal levels can make our bodies do weird things. Too much or too little of sodium, magnesium, calcium or vitamin D can make life harder. Let us know if you find the cause - one note...my Oncologist does a really good job of adjusting my magnesium, calcium & D supplementation so yours might be able to help too!
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Is anyone using MAYNE brand Tamoxifen? I haven't heard it mentioned. When I looked it up it comes in both 10 mg and 20 mg but I can't see the side of the bottle with the added ingredients. Just wondering about side effects from other than the Tamoxifen Citrate.
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ThreeC, congratulations on the deck! That's awesome. I need to think about our outdoor space, as it's full spring here.
LomLin, glad Xanax is helping!
Hope everyone is well; we have the summer time change here in most US areas. It's weird.
I got some 100 percent cotton sheets that I look forward to trying out.
My Tamoxifen is Teva brand. It's the only one our small town pharmacy has.
So, I've been using the CBD oil only after I got my pcp's okay. I was scared to try it, honestly, even though an academic colleague (she is psychology; I'm history) swore by it (a very specific brand). PCP was like, sure, that's fine (I was surprised), just be sure it's a brand recommended by naturopathic person at the store. I've been using it for less than a week. Any different? Not much, though I did notice being calmer in the evenings after taking it. I'm willing to complete the bottle before I make a call yay or nay.
Errr, anyone having reflux come on with Tamoxifen? It's been a bear. Zantac has helped a lot. I also had to take Imodium today. Haven't had that stuff since early days of chemo. These things are manageable, though, not bad enough to stop Tamoxifen. For me, sleep was the thing, and very happy it's been better.
Dee
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Hi astanyax66,
Yes, Day 9 and my stomach is already hurting. Taking the max amount of stomach meds. Will have a GI consult but don't expect a solution. My stomach can't handle a daily irritant. Very frustrating.
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Veeder, re Tamoxifen manufacturers, I've had Mayne, Teva, Actavis and with the refill I picked up this week back to Mayne. Can't say that I've noticed any major differences. I do take a Loratadine with breakfast and take the Tamoxifen at the end of my evening meal, as suggested by the pharmacist. Don't know how much difference doing it this way makes, but so far it is working fairly well for me.
Some folks have posted about having a preferred manufacturer, but that seems to be an individualized thing. I remember one poster who said she and her sister were both taking Tamoxifen and the one she preferred sister could not tolerate!
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Hi Veeder,
I'm also using the Mayne brand - just what my insurance automatically shipped (I'm required to use their in-house mail order pharmacy for maintenance meds, bleh). I know we are both having stomach issues. I have a follow up with medical oncologist nurse practitioner this Friday - maybe I'll ask her about requesting a different brand, just in case it makes a difference.
Astyanax66 - I definitely got monster acid reflux from this cancer process. At first I thought it was the radiation but now I'm pretty convinced it's the tamoxifen, since I'm over 2 months out from radiation now. The GI did an endoscopy and confirmed nothing dire is happening and prescribed me 40mg of Omeprazole 2x per day. It's... helping but not enough. My sleep and appetite are all still very messed up. I had been thinking of asking to lower my tamoxifen dose if the GI doesn't have other ideas, but maybe a change of brand first could be good to try.
Also the last couple of weeks I've been waking up achy. This is new, after about 4 months on tamoxifen. Shoulders and arms mainly. I've also been getting less exercise since the weather's been terrible and I've been exhausted but I wonder if it's tamoxifen related too or what.
Also I've been a complete scatterbrain. I wish it were easier to know what is side effect related and what is not.
Agh!
Overall though I would say I'm doing well. I changed my antidepressant to lexapro to be compatible with tamoxifen (had been on Wellbutrin), and it's treating me very well. My mood is good. Last time on lexapro I had sexual side effects but for now I am so terminally single that I'm not even worrying about it.
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Hi,
I wasn't sure if that brand was an older one since I had been picking up the Tamoxifen prescription all last year, even before I started taking it, and after I stopped since it was free.
If I didn't have prior stomach issues then I don't think I would need so much stomach protecting meds, and maybe non at all until I had been on the Tamoxifen awhile. I do notice that sometimes I can eat some food that I'm pretty sure would irritate my stomach, and it doesn't! Only to have stomach issues hit me days later. So I don't know why but I'm trying to be very careful about what I eat.
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I'm getting ready to start Tamoxifen, met with my new MO Friday. I talked with her about how some people have said they've had issues with different manufacturers and she said she has seen that. She said if I have issues then she will write the prescription for the brand name so we can avoid different manuafacturers.
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I tend to feel very achy in the evening and am curious if anyone else has the feeling on Tamoxifen. It's almost an achy feeling like I am about to get sick but by the morning it goes away. I don't have it every night but its fairly consistent. Anyone else have flu like aches?
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Hi, all,
Well, darn on the stomach thing. Thankfully, the Prilosec OTC has worked for me. I walked 2 miles at lunch and have hobbled around the office ever since. Bone pain is still better than on AI, but good grief, I wish SEs were not as rough for us.
Dee
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I have no clue what brand my Tamoxifen is. I looked the bottle all over the only thing I could find was Mft:Myl. Is it on the bottle, pill or do you ask?
You ladies might remember I'm the one who is constantly freezing! I would wake up 2-3 times a night because I was miserably cold! That was sleeping in leggings, leg warmers, LE night garment, cami and a long sleeve shirt with 4 blankets on my side of the bed. My DH has been after me for months just to go buy an electric blanket. I didn't want to because he gets warm at night. He insisted that I get one last week and I did! I'm not waking up freezing! I sleep all night with a normal amount of pj's on!
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I have no clue what brand my Tamoxifen is. I looked the bottle all over the only thing I could find was Mft:Myl. Is it on the bottle, pill or do you ask?
You ladies might remember I'm the one who is constantly freezing! I would wake up 2-3 times a night because I was miserably cold! That was sleeping in leggings, leg warmers, LE night garment, cami and a long sleeve shirt with 4 blankets on my side of the bed. My DH has been after me for months just to go buy an electric blanket. I didn't want to because he gets warm at night. He insisted that I get one last week and I did! I'm not waking up freezing! I sleep all night with a normal amount of pj's on!
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Just started Tamoxifen last week. So far, I'm taking it at night and having crazier than normal dreams. Anyone experiencing this?
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Heather2018 I had very vivid dreams my first few days. I think that is a side effect. And on occasion I will still have very intense ones but much less. I will say that about 7months in for me my body seemed to adjust to the medication. I still have issues occasionally with insomnia and definitely still hot flashes (acupuncture helps these tremendously for me). But right now, tolerable, and I am judicious about taking it every day.
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I had the crazy dreams the first 2 weeks every night. After that for the next probably 2 months a few times then the dreams stopped.
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