Bottle 'o Tamoxifen

Sloan15

I meet with my MO on the 16th. What questions should I be asking? I'm need to start writing them down. I'm 7 months post surgery, 1 1/2 months on Tamoxifan. I'll make sure they do tumor markers and liver function tests, but anything I should be asking for?

molliefish

I stopped in to the hair dressers today so my daughter could get her eyebrows waxed. I had made an appt. for a hair cut but changed it for her when I realized there just wasn't enough hair to cut. Everyone there has been awesome since this whole business started, and one of the ladies was treated for BC over 20 years ago and has had no trouble since then. They were all saying how thick my hair is, and seeing 'the ginger' in my hair. Kind of nice since all I see right now is mousy grey with ginger highlights when the light is shining on it. :-) patience patience patience.....

Edited to add.. I see my MO April 28th and there's been no talk of any follow up tests or the like. What will be, will be I guess.

NormaJean65

Can't remember who posted they couldn't find any BC women in Houston. I get my "posts" via email and don't see the one I am referring to here on the list. I live in Katy.......just west of Houston.

gemini4

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.

JerseyGirl22

gemini4, are you on any hormonal drugs for your ER/PR+ status?

gemini4

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 !). :-)

solfeo

My MO doesn't test tumor markers and I won't get any follow up scans for a year after dx, and only then because I asked. She says ASCO guidelines recommend against it because early detection doesn't change outcomes (they want you to wait for symptoms), but I know I've read the opposite elsewhere so I'm not thoroughly comfortable with the idea of so little monitoring.

I am getting tested by my ND for circulating tumor cells again soon, which has me nervous. I did have them in my blood before surgery. It's making me nervous because part of me doesn't want to know because I don't know what to do about it that I haven't already been doing. It will be good to know I no longer have them, but when you have a test like that you run the risk of getting the result you don't want. It won't change my MOs plan of action regardless. She is very stuck on the guidelines, which don't recognize the usefulness of CTC tests as of yet because there is some controversy about how they are isolated from a blood sample. She just tells me to keep working with my ND even though she has very little understanding of what he does. The ND sends my blood to a lab in Greece.

I go back and forth over whether I should make a change of MO or not. I have been told my MO is more open to alternative treatments than any others in our area so I'm not sure what good it would do if most MOs don't recognize the value of the CTC test anyway. I definitely don't want a doctor I have to lie to about what I'm doing on the side.

Sjacobs146

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.

TinyDancer5

I have had no nausea the past three days. Yay! I guess I'm finally getting used to it

Scottiemom11

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

labelle

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.

Suzanne50

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.

jbokland

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.

molliefish

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?

DeeRatz

Moliefish-I take mine every day with dinner. I don't start eating until I take it. I haven't missed a day yet

hsant

I set a permanent reminder on my phone just in case I forget

MomOfTwins98

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

superius

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....

Scottiemom11

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

Bluefrog76

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!

Sloan15

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...

ksusan

Tamoxifen has a long half-life--my guess is that a few hours doesn't matter.

Sloan15

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.

Trvler

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!

AmyfromMI

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

live_deliciously

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

Scottiemom11

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

hsant

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

MomOfTwins98

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!

Peachy2

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.