Bottle o Tamoxifen
Comments
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I am feeling fatigue exhausted during the day- I sleep well at night. I am trying to figure out if it is from TMX, boredom or from my exchange surgery a week ago.
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Hi Ladies...I have been on Tamox for 4 weeks now and I haven't had 1 SE. I had to check my pill box to make sure they were actually in there. I maybe losing a little more hair in the shower but not even sure about that. I keep waiting for a hot flash but nothing. I am my usual cold self if it dips below 70 degrees. I'm not complaining but I wonder if the tamox is working?
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Ellen, I have a small threshold for comfort too. Below 70 and I am cold- above 80 and I'm too hot. I am in search of the perfect climate and location-I want some place that is 70-80 degrees low humidity and sunny skies year round. Anyone know where I can go to find this perfect climate to retire in the US?
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I think that would be San Diego. I already googled the best climate in the U.S. My family won't move though. I am here in New England where the winters are way too long.
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CS7777, that is so funny about our eyesight going! Great observations! I started the bifocul thing a few years ago already. I'm just hoping I don't get cataracts (they run the family) and the whole idea of being awake during that surgery terrifies me!
If anyone has good places to live with minimal bad wether, pass it on! We have been in the 90s and today it might snow on Pikes Peak and our high is going to be 60! Crazy!
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Ellen - My suggestion is to try not to worry about the SEs. Different women get different ones (or none) and they come on at different times. The data on whether any given side effect is an indication of efficacy are mixed and not conclusive at this juncture. Remember that the SEs are evidence of tamox and/or its metabolites acting in other parts of the body, and you care about whether it's acting in your breast tissue. So having SEs is NOT a proven indication of it acting in your breasts! Be careful what you wish for!!!
Waldo, I felt exactly the same way for several weeks after my MX (no tamox) and exchange (on tamox), so at least for me I assume such fatigue is the surgery stress/anesthesia not the tamox. If it goes on for more than a month when you should reasonably be recovered, then you might blame the tamox. Gotta blame it for something!! Some people are wiped out by anesthesia for several months though.
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It really strange, I don't think I was this tired after the BMX and that was >8 hrs long. Maybe the effects of anesthesia are cumulative and this time, though only 2.5 hrs- just knocked me for a loop.
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Yeah, it's so hard to know isn't it Waldo? There sure could be a cumulative effect, or just such relief to have it over that you're "coming down" from the recon stress? Right now I'm only 3 wks out from my exchange so if I get really tired (like earlier this week) I still chalk it up to the surg/anesth. On the other hand there were days before my exchg, months after MX, that I'd also get exhausted and I too wondered if it might be tamox. On the other, other hand, sometimes we just get tired, right? And on the other, other, other hand, I've been thinking about BC, plastic surgery, and tamoxifen issues for 6 months, which could stress & exhaust me. And on the other, other, other, other hand, I'm perimenopausal--what effect there? My conclusion...I have lots of hands! Bad joke, sorry.
No, my conclusion was that some of these things I just can't know and I finally got tired of worrying about it. Instead I'm trying to chill, live well, and eat/exercise healthily. I'm not all the way to any of those but I'm trying. What I should do is get off these BCO threads since they continually suck me into all the issues, but I like the community so much that that'll be hard. :-/ 0 -
O.K., you're all freaking me out with this peach fuzz thing! I'm 2 mos out of chemo and just starting to get my hair, eyebrows, eyelashes back etc. I've been checking for a return of the few chin hairs I've noticed accumulating over the last few years so as that I could make sure to tweeze them before they get too long, unnoticed by me. I've found that the best place to check for strays is in the car when it's sunny - have found things there that I had no idea were growing. (Discovered this on my way into a school conference when my son looked over at me and asked "Are you planning to go into my school with that long hair growing out of your chin?" ) Now I keep a tweezer in the car.
Anyway - I was so hoping this new fuzz ALL over my face was a post chemo thing, not a Tamox thing! Kind of like when babies are born. I've definitely never had this before. Has anyone figured out a good way to get rid of it? Obviously this is a SE hardly worth complaining about compared to BC, but geez- wasn't getting old hard enough without all these extra little bonuses?!!
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I hate the peach fuzz too. I used Nair for the face to remove it on my cheeks near my jaw line. I'm afraid to shave it. I do think that we all had some of this before chemo, we just don't rememeber. I do think it's tamoxifen related.
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Yeah, I think I had some of it too, but now I noticed it anew and can only wonder if there's more. Hopefully it doesn't increase!!
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I just thought i'd let you all know that I took myself off tamoxifen for my exchange surgery as a trial. My doc kept telling me the joint problems and knee problems had nothing to do with the Tamoxifen. Well I have been off 3 weeks and not one single joint is hurting and the knees are awesome. Now the bad news....I am starting back on it tonight:(( At least I know what is causing it and that I am NOT crazy!
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I just thought i'd let you all know that I took myself off tamoxifen for my exchange surgery as a trial. My doc kept telling me the joint problems and knee problems had nothing to do with the Tamoxifen. Well I have been off 3 weeks and not one single joint is hurting and the knees are awesome. Now the bad news....I am starting back on it tonight:(( At least I know what is causing it and that I am NOT crazy!
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I have been staring at my tamoxifen bottle for the last two weeks. I just completed chemo on May 17th and my onc told me I could give my body a break and start it in two months...times ticking and I am getting nervous about starting it. We discussed a lot of the side effects but not joint pain. I know some have posted that the joint pain decreased or stopped in time but in the meantime is there anything you can take to ease the pain. I am just trying to get back into shape since Chemo and fatigue just ended and I have energy and certainly don't want to be held back by joint pain...ugh!
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DiDel - I didn't have chemo, but hopefully you'll think that the tamoxifen SEs are nothing compared to chemo. In my case the joint pain (and ovulation cramping and fatigue and hot flashes) is annoying, but it's not debilitating. I was scared to start tamoxifen and while it's not without problems, it's not as bad as I thought it would be. (5 weeks into it) Good luck!
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Thanks Tory...I think I am gonna take every bit of 2 months before I start though..
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CS7777 - your post about having a lot of hands, made me LAUGH !
I have some of the joint pain in my knees when I sit for awhile and then get up, hot flashes and facial hair. THANK you tamoxifen.
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So I saw my onc for a follow-up last Friday. He casually mentioned that my liver enzymes were elevated. Nothing to worry about, he says. *ha!* One of the side effects of Tamoxifen is elevated liver enzymes. We're gonna watch them for the next 6 months.
So...anyone else experience this?
Alaina
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Is my new dry (face) skin a result of tmx or anesthesia?
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Hi everyone. It's been a while since I've posted here but I have been trying to keep up with all the posts. Waldo, I also recently had the exchange, and I agree with CS777 that your fatigue and other symptoms might very well have to do with the surgery, or the stress or the tamox. It's hard to start tamox while also recovering from surgery, hard to know what is causing what. I had my surgery on 5/20/10 and have been exhausted since then (also, as I've posted on another thread my father died two days after my exchange, so of course that makes everything more difficult and complicated.) For DiDel and others who are worried about side effects, I can tell you that I haven't had any real problems. I was so scared and upset about having to take tamox and I must say it's been pretty uneventful. In the beginning I had some constipation and that went away. I do have night sweats but not hot flashes. In fact I am nervous about not having any major side effects. After reading here I did notice the peach fuzz. I have spent a lifetime struggling with facial hair issues and worried that it would come back. After spending hundreds of dollars on electrolysis I do not want more hair. I want to advise the women who are tweezing hairs that I was told that tweezing stimulates growth and that shaving is better. (I know shaving can be upsetting but that's what I was told.)0
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DiDel, Just remember that the SEs are really variable and it's impossible to know in advance which, if any, we will get. I'm 6+ months in and have not had any joint or bone pain. In fact, while I had stomachaches and some flu-like feelings in the first couple months, like for gulp, for the most part tamox is now a non-event in terms of how I feel on a daily basis. My SEs are more subtle - like the peach fuzz that I think is greater than before (but I could be biased aobut it) and my periods are lighter (gee darn). I also had some spotting after the last one so I have to watch that, but both my gyn and onc said one time's a nonevent. I guess my point is, try not to worry in advance...if you've decided its right for your treatment path then take it in good health and see how it goes. Remember that if it's terrible you can always explore other hiormonal tx options and/or stop altogether. Just my two cents worth!
CS
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Hi All!
Facial hair - yes I noticed the peach fuzz too and shaved it off twice. It's now gone and I don't have 5 o'clock shadow either.
Tamoxifen side effects - I've been on Tamoxifen for just over 2 months and I'm having the joint pain (mostly knees) and the hot flashes/night sweats. I've taken the pill (20mg) at night and in the morning and it makes no difference to me. But these are all very manageable.
However last Friday my left upper inner thigh started hurting like a bruise but there is no bruise there - I checked all weekend.
Today I'm going to my doctor to check it out and make sure it's not a blood clot.
Of all the side effects of Tamoxifen DVT and blood clots are my worse fear!
Wish me luck girls!
Marie
ps. CS I loved your failing eyesight observation - it's so true!
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Best wishes MarieK that the leg pain is nothing serious!!! What is DVT? I'm drawing a blank on that acronym.
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I regularly follow the threads but don't post often and have been on tamox for 3 months now. I haven't had any of the "textbook" side effects that most of you ladies mention but since I started it, I've become extremely irritable and short tempered. (It's a good thing I'm not a praying mantis because my poor husband would have had his head chewed off weeks ago!). This moodiness is not like me at all--anyone else dealing with this?
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DVT is deep vein thrombosis (yes - a serious side effect - although not common)
Elevated liver enzymes - I have ONE of the enzymes elevated. My BC doc, a gyne person, didn't have a clue what it meant and referred me to my family doc. She is pretty clueless, and as I was leaving town for 4 months, decided not to worry about it 'til Oct when I am back and can meet with her and perhaps have a second blood test to figure it all out.
Moodiness/irritability - has been a COMMON complaint here. I think for many of us our husbands are saints!
Gorgeous day here on the west coast albeit a bit breezy - bright blue, sunny sky, sand just exposing itself at low tide, waves gently lapping...I send it all to you with positive, healing energy!
xo
C
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DVT is deep vein thrombosis, and I'm with you Marie -this and pulmonary embolism are my worst fears being on Tamoxifen. I keep having cramps and pains in my calves and inner thighs, but it comes and goes. Also, I feel like my varicose veins are multiplying fast.I've never had a blood clot, so It's so hard to know what to worry about. I think I remember my ONC saying something about women on Tamoxifen having no real overall survival advantage because the risk of death from other causes makes up for the decrease in BC related causes.Can that be right?- I'll have to do some research. And of course he was adamant that I should be on it.
Has anyone out there had a blood clot or related problem that they could tell us about. How did you know, what did it feel like etc.? If it happens, do they take you off Tamox forever?
Beggy -oddly enough, I feel a bit more emotionally stable on Tamoxifen than before, Shocked me because I really expected the worst in that department. May be that I'm just not getting my period anymoe (chemopause) so there are no hormonal fluctuations now - I had the worst pms. If you're still getting your period that could definitely explain the way you feel on Tamox -it's probably like a long perimenopause.
Nair for the face? Does that make you red or irritated? I already shaved my chin and jawline, maybe I'll do my whole face once and see what happens. Yes I've always had some fine facial hair, but not like this!
Alaina - love that "nothing to worry about" . Yea, O.K. How long have you been on Tamox? Six months seems like a long time to wait.
Good luck Marie - hope its nothing.
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MarieK, I noticed that I started getting a pain in my upper outer thigh at some point during my chemo, and have continued to have it off and on since. I mentioned it to the oncologist and nurse, and they didn't seem concerned. They told me that if I had a blood clot, I'd know it--there would be redness and swelling. But I still wonder why I get that pain that wasn't there before.
I started Tamoxifen on April 17th of this year, along with a calcium supplement and a baby aspirin--as directed by the oncologist. I notice my fingers and feet feel very sore in the morning, but it usually eases throughout the day. I'm having a lot of hot flashes throughout the day, and also at night. I wish I could sleep through the night just once--I think it's beginning to wear me out. I've noticed that my blood pressure has shot up higher than it's ever been and don't know if it's related or not, but I suspect it must be. I'm also worried about possible liver damage, since I found out I had beginning fatty liver disease even before I was diagnosed with breast cancer. The doctor/nurse have both told me that an antidepressant has been found to help with hot flashes, and that there's also a blood pressure medication that's been found to help with hot flashes as well. But I don't like taking so many pills and am afraid of the side effects--I don't know what to do.
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Thanks for all the well wishes!
I'm back from the dr - he had me lie face down while he poked and bent my leg. He tells me that there is some deep tissue swelling but not much. No heat or skin discolouration - just a twingey kind of pain when I stand and walk. Like I said before it feels like a bruise but there is no bruise there.
He sent me for a blood test - a D-Dimer.
Here is the definition from wikipedia:
D-dimer is a fibrin degradation product, a small protein fragment present in the blood after a blood clot is degraded by fibrinolysis. It is so named because it contains two crosslinked D fragments of the fibrinogen protein.[1]
D-dimer concentration may be determined by a blood test to help diagnose thrombosis. Since its introduction in the 1990s, it has become an important test performed in patients suspected of thrombotic disorders. While a negative result practically rules out thrombosis, a positive result can indicate thrombosis but does not rule out other potential causes. Its main use, therefore, is to exclude thromboembolic disease where the probability is low.
So if it's positive he will investigate for a clot further (ultrasound?) if not we'll just chalk it up to aches and pains.
On a positive note I got the results of my last week's blood test - to test my estrogen levels. My FSH, LH and Estradiol levels all indicate that I am POST menopausal. Actually my Estradiol test result was immeasurably low!
What that means for me is that I will not be having an Oopherectomy next month (it was booked in Feb and I've been questioning the need for it). My GP agreed and told me there would be no benefit and the risk of surgery is unnecessary.
My radiation onc told me last week that the chemo I was on (FEC 100) has been known to shut down ovaries permanently. I haven't had a period since last Oct - after my first chemo - and haven't had a hint of one since.
I'm 48 this year and I'm more than ok with that!
FYI - I'm able to check my blood work results online so as soon as I see the results of this D-Dimer I'm to call my dr to book another appt to discuss what's next.
Moodiness - yes I'm bitch these days too. It's kind of shock to everyone since I used to be so easy going and a bit of a pushover. Not sure if it's the Tamoxifen or just having to go through all this cancer shit!
Have a great night ladies! Here's hoping your night sweats are for fun and not medically induced!
Marie
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Thanks for all the well wishes!
I'm back from the dr - he had me lie face down while he poked and bent my leg. He tells me that there is some deep tissue swelling but not much. No heat or skin discolouration - just a twingey kind of pain when I stand and walk. Like I said before it feels like a bruise but there is no bruise there.
He sent me for a blood test - a D-Dimer.
Here is the definition from wikipedia:
D-dimer is a fibrin degradation product, a small protein fragment present in the blood after a blood clot is degraded by fibrinolysis. It is so named because it contains two crosslinked D fragments of the fibrinogen protein.[1]
D-dimer concentration may be determined by a blood test to help diagnose thrombosis. Since its introduction in the 1990s, it has become an important test performed in patients suspected of thrombotic disorders. While a negative result practically rules out thrombosis, a positive result can indicate thrombosis but does not rule out other potential causes. Its main use, therefore, is to exclude thromboembolic disease where the probability is low.
So if it's positive he will investigate for a clot further (ultrasound?) if not we'll just chalk it up to aches and pains.
On a positive note I got the results of my last week's blood test - to test my estrogen levels. My FSH, LH and Estradiol levels all indicate that I am POST menopausal. Actually my Estradiol test result was immeasurably low!
What that means for me is that I will not be having an Oopherectomy next month (it was booked in Feb and I've been questioning the need for it). My GP agreed and told me there would be no benefit and the risk of surgery is unnecessary.
My radiation onc told me last week that the chemo I was on (FEC 100) has been known to shut down ovaries permanently. I haven't had a period since last Oct - after my first chemo - and haven't had a hint of one since.
I'm 48 this year and I'm more than ok with that!
FYI - I'm able to check my blood work results online so as soon as I see the results of this D-Dimer I'm to call my dr to book another appt to discuss what's next.
Moodiness - yes I'm bitch these days too. It's kind of shock to everyone since I used to be so easy going and a bit of a pushover. Not sure if it's the Tamoxifen or just having to go through all this cancer shit!
Have a great night ladies! Here's hoping your night sweats are for fun and not medically induced!
Marie
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Your liver processes everything. Your numbers can become elevated because of meds but also if you have gallstones. You can have silent gallstones even and not know you have them.
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