Bottle o Tamoxifen
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ORgal. . . I probably have 10-20 a day. Mine are hot dry flushes. . .I feel like I'm in a desert sauna. They often come on right after I wake up freezing. Drinking cold or ice water helps. Also peppermint and icebreakers stop the reaction. The literally start behind my neck and spread down my body if I don't stop them. I have a tower fan that blows directly on me at night.
If I miss a dose of gabapentin, eat a heavy dinner that's hard to digest or eat spicy food, I have a miserable night of cycling back and forth between freezing and burning up.
ayr1016. . .if you have questions about lupron let me know. I did two rounds of 3-4 months each with a break in the summer because the HFs got so bad. Ultimately that's why I stopped it, but everyone has a different expeirince. As for freezing. . .tell the nurse she's nuts. Lots of us have freezing chills.
Scottie
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Raising my hand for the freezing chills. I don't get them anymore, but certainly did the first few months!
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Thank you scottiemom11 and lorikg. I certainly know chills from regular body temp, so I know I'm not losing my mind
lorikg: did the chills turn into hotflashes after a few months?
scottiemom11: I am wondering if the Lupron is giving me most of my side effects right now. However, I seem to keep reading how random side effects can pop up with Tamoxifen weeks, months, and even years down the road. What a rollercoaster this ride is.
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ayr1016 - I was/am one who gets the chills - they have gotten better but, for the first couple months, was freezing in bed - 4 blankets including a down comforter and then a heated throw...would shake badly. Then I'd get up in the middle of the night sweating - The chills have gotten better but just this past Monday, I had my MO appt and I told him that I was nervous about the Tamoxifen working as I really didnt get hot flashes (I'm 49) - he said the chills are doing the same thing and is my bodies reaction - he did not seem surprised at all. I was certainly pre-menopausal when this all started but now have gone almost two months without a period. Very bloated though so seeing my OB next Thursday -
Not having fun but, as many others have said, the SE seem to come and go...as soon as you think one is sticking around, it disappears and another takes its place - guess it keeps us on our toes:-) I had such terrible teeth pain in the beginning for about 6 weeks - was so painful. My dad is an oral surgeon and when I told him, he had no idea why/what was causing it. He had me try Sensodyne toothpaste and, after several more weeks, the tooth pain is gone. I've stayed on it and take Gabapentin so perhaps that is helping too -
FYI...Gabapentin is given here for hot flashes so, if you happen to be on it, may keep the hot flashes from happening - may be what happened in my case.
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I hate Tamoxifen. My current issue is feeling like my brain is Jello! You know that feeling where you turn your head and it feels like it takes an extra second for your brain to catch up? I've had that all day. I'm guessing this could be something related to my sinuses although the last ENT seemed to think I had no sinus issues. Have I mentioned I hate Tamoxifen?
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ayr1016—you asked if the chills turned into hot flashes. Actually, I would have them both. It seemed like I would get a chill, go get a sweater on, adjust the thermostat to turn off the air conditioner…then BAM…I'd be peeling off the sweater, rushing to turn the air back on, and asking everyone, "wow, is it hot in here?" Now 8 months later, I don't get chills, just hot flashes. Not as many, and not too bad.
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lorikg. . .that's exactly what happens to me. Freezing to burning hot. After 14 months it's the same pattern. I keep sweaters handy at work and alternate hot tea with ice water.
Scottie
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Scottie - what dose of Gabapentin are you on
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Hi everyone. I've been on Tamoxifen for going on 4 years. Just wondering if anyone else has had trouble with their toenails? I did have some lifting after Taxotere, but that all grew out, and all was fine until about 4 months ago. My one big toenail has a split in it that doesn't seem to change as my nail grows. It's better than losing a toenail, I know, and I keep my toenails polished, but I'm afraid it might catch on something. I never thought of it being related to Tamoxifen until I stumbled upon a couple of mentions in the web.
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Indigo - That's pretty unusual about the toenails lifting. I haven't seen that before with Tamoxifen. Maybe someone here will chime in. I have a middle toenail that is split and grows that way. But I had it before starting Tamoxifen, and I have wondered if I injured the toe somehow. I keep it cut really short so that it does not catch on things.
I am struggling with dryness--all my mucous membranes as well as my skin has dried up. It's really the only SE I have other than I cannot put on weight. I am so dry that I have to use special lozenges at night to keep my mouth moist; my onc gave me a prescription for a low-estrogen vaginal cream but I am afraid to use it (ER+ tumor); now the latest thing is that my eyes are miserably dry and red all the time and moistening drops do not help. I am going to see an eye doctor today. I am afraid of eye damage from such dryness. I did a search through the archives here, and this does not seem like a very common SE.
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I've got a question....
I've only been on Tamoxifen for 5 days. On Saturday, we got a new dog. Our current dog was not too happy about that, so we had to introduce the two to each other, slowly. We had them on leashes and during the course of this meeting, our current dog tried to lunch at the new dog several times. I was holding on to the current dog, so I used A LOT of leg muscles to keep her back.
Yesterday, I woke up with SORE legs. Really, really sore legs. I half expected that considering how hard I used my legs the day before to keep control over the dog.
This morning, I woke up and my legs are still SUPER sore. Granted, I'm not in the best of shape, but I'm also not in horrible shape either. I guess I'm in average shape.
Is my leg pain from overusing muscles, (it hurts right above my knee, but not really my thigh, if that makes any sense), or could this be from the Tamoxifen? Have I even been on the Tamoxifen long enough for muscle pain to happen?0 -
I have been taking it now for a week. I have been paranoid about SE's so I tend to dismiss anything this early. However, I was doing an hour of elliptical at the gym and it takes every bit of effort to do it now. Just wondering if it's all in my head or if it's a SE of starting Tamoxifen.
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Katcar0001 – I am having the dry eye problem as well. I'm constantly putting in drops. And one of my eyes just hurts sometimes, like I want to close it to relieve the pain, but that doesn't really help. I'd like to know what your eye doctor tells you…
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Hi all. I finished chemotherapy in July 2015 and radiation in Oct 2015 and started Tamoxifen on Oct 28, 2015. In the beginning, I only had hot flashes and some achy joints. About mid December, I started having pelvic pain. I went to my GYN who found I had two small cysts and said my endo lining was starting to thicken. A few weeks later, I was still having pelvic pain and it was sometimes accompanied by lower back pain and flank pain. The GYN referred me to a urologist who ordered an ultrasound and then a CT scan to check for kidney stones and also to see if they could see any other cause of the pain. The scans all came back normal. In the last 3-4 weeks, I have also started to feel very fatigued. It is hard for me to concentrate sometimes and I have to go to bed before 9:00 because I just can't stay up anymore. I have also had blurry vision, dry eyes, constipation, sores in my nose, sore throat and several other symptoms. I saw my ONC this past week and he did some additional bloodwork but found nothing so he wants me to come off of tamoxifen for about 4 weeks to see if that is causing all these symptoms. I feel they have to be cause by the Tamoxifen because in December, I was feeling so much more like myself and had plenty of energy. He feels like the lack of energy may just be my treatments catching up with me.
Has anyone else had a delayed onset of fatigue after treatments or have fatigue that you feel is caused by the Tamoxifen? If it's the Tamoxifen, are other options any better? I know Tamoxifen is no guarantee of a recurrence but feel that I should do everything possible to prevent one.
Thanks for your thoughts!
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Etnasgirl - I also get very sore legs but am on gabapentin to help - I do find that it hurts less when I'm moving and better when I stand
New girl - the fatigue seems better as the days go by - radiation apparently took way more out of me than I care to admnit - got through it and worked every day but, once it was over, realized just how exhausted I was. I am in bed by 7:30 every night although I get up at 4am to work out and get going for our days. However, I've always done that so think my body just gets more tired now
LorieKG - was at eye dr last week - he said that dry eyes is a common side effect of Tamoxifen. I've had dry eyes since my Lasik in 2003 so never really put it together as a symptom - he told me that Refresh is non-habit forming and okay to use as much I need to. I use it at night before bed and, if I wake up in the night, need to reuse but don't find I need it during the day. My vision has definitely changed since being on Tamoxifen. Better now but, in the beginning, had sort of a glare over my eyes or a film. That also seems much better now as the time goes by but I had it checked, just in case.
Jpr43 - The abdominal pain and bloating is my scariest symptom - have a swollen node in groin and get bad pains in pelvis and pubic area/bone. I did have ovarian cysts that were found during an MRI for the leg pain so they were watched and seemed to have resolved but the pain is back - have OB appt this Thursday as I am just not comfortable and when I described what I felt over the phone, she told me to come in and be seen. I see a PT at the lymphedema clinic for breast lymphedema and, when she saw my bloating, she was concerned too - My last period was January 13 and that is probably not helping matters - feel like it should start any day but never does -
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MomOfTwins Thanks for replying to my question! I'm noticing that, like you said, it hurts less when I'm moving around and when I stand.
At this point, I have no idea if it's from pulled muscles or the Tamoxifen. I guess only time will tell. If it goes away, I guess it wasn't the Tamoxifen. LOL!0 -
rleepac. . .sent you a PM. Indigo. . .my nails are paper thin on the Tamox, however, my hair is not thicker and growing long. No rhyme or reason. I too get fatigued but find that I feel better and sleep better if I go to the gym or hike after work so I try to do so several times per week.
Scottie
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I think the Tamoxifen makes you more sensitive to muscle/joint/bone pain. I have some herniated discs in my back and neck and it feels like the pain has been exasperated since I started Tamox. I have found pushing through the pain (walking) helps.
I have a dry eye disease (corneal disease actually) and the Refresh Plus helps a LOT. I always have the single use containers (preservative free!) with me at all times. My corneal specialist recommended this brand.
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Scottiemom1, I didn't get your message.
Interesting that some of you who are reporting eye issues haven't had chemo. I first had the scary dry eyes (on AC), and then my eyes would water so much that tears would drip down my face (on Taxotere). I did go see an opthalmologist after Taxotere, and found out I have chronic blepharitis. I still struggle with it almost 4 years later, although it has improved and can be manageable. I used some Rx antiinflammatory drops, and I also use Soothe XP drops. I haven't thought much about a connection with eye problems and Tamoxifen, although that probably makes sense, too.
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I'd like to ask how long after everyone started Tamoxifen did their SE start? I'm still a rookie, having just started a week ago. I was terrified to take that first pill... I guess I expected the hot flashes to start that night but so far nada. I've had a stiff neck for a few days and I thought at first I'd just slept wrong but now I'm wondering if it's the Tamoxifen
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Good Morning RX34 - some of my SE started about a week in they'd go away and others would start. I also get a very stiff neck at times and thought it was sleeping funny but seems to happen periodically and only since starting Tamoxifen. My experience so far has been that some SE are fleeting and some stick around. I've been on since November 30
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It's interesting to see that I am not the only suffering from dry eyes. My doctor prescribed Systane drops. If that doesn't help, then we may switch to Restasis.
Here is a very helpful article on the eye conditions that can result from breast cancer treatments, including Tamoxifen: http://www.aao.org/eyenet/article/watch-ocular-eff...
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I've been having issues with dry eyes too. I tried artificial tears for a couple of months, but finally gave in and had my eye doctor prescribe me Restasis. For the first month I also have to take steroid drops (Lotemax), which makes me unhappy, because I won't be able to wear contacts. I do not like myself in glasses, but if it's supposed to help me in the long run, I'll somehow suffer through a month of wearing them. I just hope the Restasis will do the trick, because I can barely see when I'm staring at computer at work.
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I also thought I need new pillows or mattress! Yup! the Chills then Hot Flashes! It seems quite often while at work - I got so cold that I leave my desk for hot tea in the break room, by the time I got back to my desk, I would looking for ice water!
I also have a little paper fan I keep at my desk.0 -
katcar. . .I've used Systane and Restasis for dry eyes. I have severe dry eyes notwithstanding the Tamoxifen. My SES probably started a month in Tamox. I am taking turmeric and it seems to help. Still need to clear with MO about it longterm.
Scottie
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I was not doing well on Tamoxifen. The muscle aches and stiffness made me feel like I was 80. I could tolerate the chills/flashes but the rest was not tolerable. Doc said I had to take SOMETHING...as a stage III I am at too high risk to forgo. He let me take a break before changing
After 2.5 weeks off of Tamoxifen, I feel like a new woman! But, I am starting on Anastrozole tomorrow. I hope I don't have the same side effect of muscle pain and weakness....I'll trade those for the treat of a dry vagina! (lol).
Best wishes everyone!
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Thanks MomOfTwins98. I get so anxious every time I take a pill. I keep thinking 'is this the one?' that's going to start the hot flashes. I'm basically expecting the worst but hoping I get lucky somehow
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RX34--I have been on Tamoxifen for just over 3 years. I started at the age of 49 and was not anywhere near menopause. I never had a single hot flash while on it. It wasn't until I had my hysterectomy with ovary removal a year ago that I started to get them. My biggest SE was the muscle pain. That started after about 2 months and is now under control with turmeric and ginger. About a year into it, I would get a little lightheaded with maybe mild nausea which has lessened over the last year, I think due to starting probiotics. And I would get colds pretty often but not this whole winter since I started olive leaf extract. You will have SEs but they may be alot milder than you think and alot of them are manageable. My MO suggested keeping a calendar that noted when or if I had SEs as well as when I started and/or stopped any meds and supplements. It's helped me quite a bit to figure out which things help or hurt or do nothing.
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Scottiemom - That's news to me about turmeric helping with dry eyes. I have a really good turmeric supplement but I have not been taking it due to concerns about whether or not it interferes with Tamoxifen. Would be interested to know if your MO says it's okay to continue the turmeric. Neither of my OS or MO seem to know much about supplements. Are you taking a fish oil supplement? My eye doctor said to continue with that as well (lube from the inside
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First dose of Tamoxifen, down the hatch.
I'm really interested in taking turmeric. Like others here, my MO doesn't put a lot of stock in supplements, but I'm a believer. I've read conflicting stuff about turmeric and Tamoxifen; anyone care to weigh in?
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