Bottle o Tamoxifen
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Sloan15, some MOs don't do blood work for those who have had early-stage BC. Like mine, for example! It's kind of crazy how doctors vary in their approach to testing blood. My MO explained that her practice no longer does it because it's not reliable and doesn't improve survival rates. My hospital is affiliated with Harvard, so I don't doubt there is good thought behind their approaches. Of course I think I would feel more secure with the extra testing, but not enough to seek out a different doctor.
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gemini4, are you on any hormonal drugs for your ER/PR+ status?
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JerseyGirl, yes I am going on almost three years of Tamoxifen. I recently had blood tests to check my hormone levels to see if I'm in menopause -- though I haven't had a period in a year, the levels suggest the ovaries are still working. So I'm not ready to switch to an AI just yet, maybe later this year.
(I just edited my signature to include tamoxifen !). :-)
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gemini4, who is your MO? I assume that you're at Mt. Auburn. My MO is Dr. Weissman. She has not done any blood tests for me, but I did just have one as a part of my regular physical which showed slightly elevated liver enzymes. I have also heard that "tumor markers" are not reliable. As far as I can tell, I will only know if I have a recurrence if it shows up on a mammo, or I develop pain somewhere.
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I have had no nausea the past three days. Yay! I guess I'm finally getting used to it
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My MO does blood work every 3 months. I will have to ask what she is testing for. All I was told was that my numbers looked great so maybe she is testing for tumor markers etc.
Scottie
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No tumor marker tests or scans without symptoms for me either and I'm being treated at Vanderbilt. I guess they know what they are doing, but I too, sometimes think I ought be followed more closely. Good tumor marker tests might make me feel a bit more secure, although I don't really want to have more scans without there being any symptoms-I think my body has had enough radiation already for this lifetime.
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My MO also does blood tests every three months to check for tumor markers. I also got an "all clear" when I was there recently.
Also noticing that my night sweats are subsiding again. I wonder if my body is getting used to the Tamoxifen. That is really the only side effect that I was experiencing. And I always had the night sweats, they just got worse on Tam.
So maybe it's all uphill from here. One can only hope.
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typically, labs every 3 months for 2 years to watch liver enzymes and tumor markers. Of course, any symptoms or unexplained pains would warrant a closer look.
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I forgot to take it a couple days in a row, one day even after I counted to ensure I'd been taking them every day. I need a calendar beside my bottle that has a little x on every day... like a prisoner marking down the days
I didn't notice any difference. My husband said I seemed more like my older, less cranky self. I said Pardon?
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Moliefish-I take mine every day with dinner. I don't start eating until I take it. I haven't missed a day yet
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I set a permanent reminder on my phone just in case I forget
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I use one of those clear pill boxes with the days of the week. FIll it up each Sunday. I take many different medications that I wanted to be sure I do not skip a dose...sometime I forget that I took it so also protects me from taking two:-) I take gabapentin which can play with my mind so better safe than sorry
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Got one of the weekly pill box from the chemo class. been using that. so far (about 100 days - just finished 1 bottle) no miss! Although I take it before bed, so sometimes is 12am.... sometimes it's past 1am....
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I have two daily meds reminders on my phone. I'm on several meds now. Most are 2x day , but one is 3x. I also document when I take them. Evernote is a great app.
My sweet Dh bought me a cooling vest as one of my valentine's presents. Our 13yr ASD ds promptly swiped it from me. I think it's like a weighted vest for him. I don't need it in the winter but may have to swipe it back this summer. My flashes are all dry heat. I don't sweat so have to drink ice water sometimes to cool down.
Scottie
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I don't allow myself to have coffee until I've had the tamoxifen. It's very motivating when you're very addicted to that first cup of coffee!
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What a great idea Bluefrog! I don't get up at the same time each day. Does it matter? Sometimes I have a 3-4 hr difference in times in the AM...
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Tamoxifen has a long half-life--my guess is that a few hours doesn't matter.
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Yeah, but I take it twice a day... Four hours out of 12 could be significant. I'll ask my doc. Right now I'm setting my alarm, but I don't want to depend on technology in case I go camping or my phone is dead.
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Are any of you having chills? I have chills and then sometimes a hot flash. I have been having a hard time sleeping not because of the hot flashes but because of the chills. I have been sleeping on a heating pad the last two nights and had barely a hot flash at all!
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Hi Trvler,
Just wanted you to know I've been on tamoxifen since May 2013 and I've had way more cold chills than hot flashes or sweats. I still get both on occasion but not as often as before
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yea. I am getting chills constantly too. My skin is actually cold so not just my imagination. But I'm learning I'm having some issues with my thyroid and that controls your body temperature and cold tolerance. I've heard the issue may be from radiation or tomoxifen or both
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I alternate between freezing cold and burning hot. No sweats, just dry heat. I'll wake up freezing and a short while later I'm burning up. Makes it hard to sleep sometimes. This cycle was much worse when I was also on lupron.
Scottie
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Me too! I alternate between being freezing cold and hot. I'll wake in the middle of the night extremely hot, take off my sweat pants and sweat shirt, then about 1/2 hour later I'm freezing. I never attributed this to a possible side effect from the Tamoxifen
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I have gotten chills at night since the first week of Tamoxifen. Actually wrote a note, similar to yours, asking if anyone else had this problem. My mom bought me an electric throw that I use under my covers when I get into bed. It turns off automatically after 3 hours and has helped a great deal. I am noticing that, as the time goes on, the chills are becoming less frequent so maybe my body is adjusting. I also finished radiation about 5 weeks ago so perhaps that is why..no idea. The funny thing is that I expected to get bad hot flashes so received a portable personal fan from Brookstone as a Chanukah gift and i have yet to open the package:-) I am also on gabapentin and the care navigation nurse had told me that they prescribe gabapentin to help with hot flashes . I'm on it for pain so it may be keeping them from happening. I was so worried that the Tamoxifen was not working but have been told that it is not a sign of it working. (I still worry). I'm in the northeast and it was MINUS 19.6 at 5am today when I got up with a wind chill of MINUS 45 degrees - could have used a hot flash! Its up to minus 3 right now so a big improvement. We have chickens and my daughter keeps goes out to check on them...can only be out for minutes at a time as it is so brutally and dangerously cold - to be in 40s by Tuesday - so strange!
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Glad to hear that the extremes in temperature are not just my imagination! I'm on week 3 of Tamoxifen. Is anyone else having ringing in her ears? I can't find it listed as a side effect anywhere.
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I absolutely had chills and hot flashes when I started in July. I felt like I was constantly adjusting the air conditioner (not too mention making my family crazy!)--or putting on more clothes only to turn around and remove them!! I do still get the hot flashes sometimes but the chills, thankfully, have disappeared.
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Peachy2--I also have ringing in my ears. Can't say for sure that it's due to Tamoxifen since I just developed it this past Nov and I've been on the med for 3 years. I've started taking olive oil extract capsules and something called Citridrops which I put in my saline rinse (NeilMed). It's helped quite a bit. I think next week I'm going to go see and ENT and have him check my ears just in case. I really think mine is due to a chronic sinus infection that just won't totally go away. Sometimes I have pressure in my ears and sinuses which makes me lean toward sinus issues.
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Another vote for the chills. Oddly, the hot flashes that have lingered from menopause about 7 years ago have been less while on tamoxifen. My MO had me stop the tam for 2 weeks to "reboot" and during that time the chills went away and the hot flashes were worse. Back on now for about a month and I am overall colder than normal and get spells where I just can't get warm. However, at night as soon as I snuggle under the covers and warm up to a comfy temperature, I start to overheat and end up sweating and having to kick off the covers - repeat cycle most of the night. Nice to hear that some got better after recovery from radiation. I just finished rads almost 2 weeks ago and the burns are finally starting to turn the corner towards healing, so hopefully that will help with the chills too.
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Does anyone know the protocol for missing a pill? I take mine in the am and I didn't realize until last night so I skipped it. Should I have taken it?
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