Bottle o Tamoxifen
Comments
-
If anyone had asked me if I drink more water as a result of Tamoxifen SE, I would have said, "No, not that I am aware of" as I sit here with about my third glass of water this afternoon. Okay ladies, so I'm not in tune with my bod.
Hope everyone had a great weekend. Here is a shout out to all the newbies to this board. I just joined up last week and everyone has been very gracious.
0 -
Sorry Hadley. I never heard anything about CDPY26.
0 -
Sherryc- don't worry....your body will adjust and meanwhile, tamoxifen is fighting on your behalf. try halving the does so you take half at breakfast and half at supper....seems to keep side effects at bay
Hadley- I don't know what that is either. CAn your onc nurse give you information tomorrow?
0 -
We need to add another car to this train!!
Hadley - CYP2D6 testing has been dismissed as a concern about metabolizing Tamox - this came out at the December San Antonio conference. The test is no longer recommended.
0 -
Thanks for the info Hadley....here's what I think...take the tamoxifen...it won't hurt you to do so and will likely help a whole lot. check out the nature girls discussion..they have a lot of information there that may prove to be helpful for you.
0 -
hadley: I specifically asked my onco this question to see if he had checked me for this and he said there is not enough evidence on that test at all and to take it. Then at the breast cancer summit this year this topic was discussed and the all the docs agreed as well. I know the link to their info is posted here on bco under research or something like that. I know I posted it before but this thread moves fast and I'm not sure what page it was on.
0 -
Wow fast moving!!
Ok, SE.....darn I thought I was getting forgetful before but wow it just seems like theres a misfire in the brain network! LOL I have a thought and then it's gone and I search hard to retrieve it ....and sometimes can't...like the walking into the room and saying "what did I come in here for" but worse.
Also, I wonder why it is that some docs recommend stopping Tamox for exchange surgery and some don't?? My Oncologist says it has such a long half life, stopping for 2 weeks wouldn't make much difference. But that there was really no concern because the clotting effect is not the regular type of clotting (like the kind that you take aspirin for...can't remember how she explained it...just a different mechanism) And I asked my PS if he needed me to stop for the ex. surgery and he also said no. What has everyone else here done?? I'm curious....
0 -
EastCoastGirl my BS told me to stop for 2 weeks before surgery.
My PS didn't know but defferred to what the BS said to do.
I tried to ask my ONC but he never called me back when I called to ask the first time (back in Sept) but this time round he said it was ok to stop and he wanted me to stop anyway because I was having other issues and he wanted to rule out a Tamoxifen side effect.
I was having neck/jaw pain but it didn't stop while I was off Tamoxifen - it's from my night time jaw clenching from stress. So I need to find some new ways to relax my jaw when I'm sleeping.
As for the forgetfulness - I'm not sure if it's chemo, Tamoxifen, doing too much, stress, getting older or a combo of all of the above!
BUT I did see this youtube video that was so funny and so true!
0 -
Random question here for people:
When you go to have your mammos/ultrasound, do you have to take your films personally to your surgeon to read them or does the hospital send them? For the past three years, I've been seeing a surgeon who is over an hour from me, and I always have to make two three trips. One to get the scan, a few days later to go pick up the films and drop them off at the doctors, and the third to go and find out the results. This takes way too much of my time than I think is reasonable or necessary. I'm wondering if this is standard procedure? I really want to switch to a dr that is closer to me and doesn't require me to pitch in with the messenger duties. But I'm told I'm stuck with him for a few years.
0 -
Morning Hadley! Sorry it took so long to hear anything...
But yes, the Cyp2d6 test is just that....a test. I have been told by the Oncologist that women are still prescribed Tamoxifen, even though the test shows them to be a low metabolizer. They feel your body still benefits...Some Docs don't even DO the test, for that reason...because they know some tests have so many variables. So don't worry...Seems as though even if you aren't a "good" metabolizer, you will still have the side effects. So you are not just taking this pill blindly....it IS doing something in there!
Hey little Surf.....Before you do anything, Call the Doc or hospital you want to see, and ask them to get your films! I did just that after my ultra-sound. My appointment was clear across town, & they were setting me up for a needle biopsy within their network. So I called my Primary Care, & told her I want HER to be in charge, & not go all over the place for the tests..She then told me to call & have my film sent over to the Lutheran breast center, where I would be having the needle biopsy, & any further surgery/treatment....which was a LOT closer to my house. But always call before you do anything.... The one tech even personally delivered my film over to the breast center, because she lived near there.... So just get all your ducks in a row, & go from there! And let us know! xoxoxoxo
0 -
Regarding stopping tamox before surgery. Both my onc and PS felt strongly that there was no need to stop it. Also mentioned the long half life...takes a month! to get out of your system my onc told me!
Funny story ... I'm on day 4 of Tammy ....watching for symptoms ...and notice my urine is a diluted reddish color!?!? So I start to worry! Am I bleeding? Are my kidneys shutting down?
...I try to think of what Is diff besides Tammy ....then realize I had a lot of beets the day before! Sure enough...googled "beets & urine" and found my answer! My husband couldn't stop laughing!0 -
ECG..When I had a revisional surgery in Nov, the PS said it was up to my ONc, he said he perferred 2 weeks but that some people dont come off at all and they just give them a special injecion after surgery, When I called my Onc office she said 1 week, interesting all the different doc opinion on it. I have another surgery in April and I will be curious to see if they say the same thing to me. I have heard the same thing though that the half life is long .
MARIEK.I have tmj issues as well. I have a nightgaurd I use everynight and still having jaw issues, must be all the stress...but the nightgaurd does help because I would imagine I would feel a whole lt worse without it.
0 -
EastCoastGirl - I had my exchange surgery last May and did not stop taking Tamoxifen. The PS never mentioned it.
SusansGarden - thanks for the laugh. Beets - who knew!
0 -
surfette-my radiology place sends everything to my Dr's. I don't have to do a thing. The only time I had to deliver was my first time to the BS when I was needing all my old stuff. It was faster for me to pick them up and deliver than to wait on them. I now use one that the is convient for me and my dr's.
Stated the tammi last night. Woke up my usual 2 something and went to the bathroom and right back to sleep. Woke up again about 4 and never went back to sleep. Don't know if it is the tammi or my anxiety but if it keeps up might have to go back to caffiene just to stay awake at work. Might try a sleep aide tonight.
0 -
Good morning everyone.
SusansGarden - thanks for the morning chuckle. Beets indeed!
Jo - Sadly, my night sweats aren't going anywhere, I'm nearly at year 3 of Tamoxifen, with no relief. Last night was a little better and hoping I'm on the down slide of the bad week. My sweats are every night, but these horrible ones last about a week.
Hadley - I agree with all the others. Take the Tamoxifen and forget about the CDPY26 test results as they now are deemed unreliable.
Surfette - No, I don't need to messenger my films, but maybe that is because my Onc is in the same town as my PCP, and I am seen at a Comprehensive Cancer Center. You got some great advice from Chevy about callingand asking for your films to be sent.
Chevy - love your pic.
0 -
This train is movivng so fast as I cannot seem to catch up, 2 days without checking in and there is a ton to read......Happy Tuesday to all!!!!
Susangarden sounds like something I would do......still laughing over here.....
Tink/MarieK I have a mouth guard and I still wear it and my jaw has been extremely sore, I could not imagine it without it.....I would have no teeth as years ago I was stressed over an issue with my friend and I had my mouth guard in and when I woke up and my 2 front teeth were loose.......can you imagine if I didn't have it in, I would have no front teeth as it is obvious I am a grinder......
HadleyI also worry as I wonder if I metabolizing the little white pill, but my doc does not believe in testing me and I am sure he has good reasons.....try not to worry about it and look at it as an Insurance policy......I sure don't want to be without it.......
Eastcoastgrl I too have the memory loss and I am forever going in to a room that I just walked in to grab something and I stand there like DUH.....way too many times.....I think that is the hardest for me, but I wonder if it is pre menopause and not the stinking pill.......
Well it is snowing here once again, YAY!!!! I need Spring to hurry up and arrive........when do we change the clocks???? Does anyone know.....
0 -
Chevyboy I did get those pic's and my kids and I loved them!!!! Thank you! I still personally think that your profile is the best......0
-
Guess I am going to have to just deal with the night sweats. Took my 1st Effexor last night and now am extremely sick. Had to come home from work. Not bad, have missed 3 days of work in over 11 years due to illness. Drinking lots of fluids to flush that pill out of my system. No sleep last night so will have a nap later.
Sherry - I think we all have anxiety about the little white pill when we start. I have been on it a month and anymore I just put it in the mix of all my other meds and supplements and don't even give it a second thought.
0 -
Jo-sorry about the Effexor making you sick. I took antidepressants once a long time ago and I remember they made me sick for about 2 wks until my body got adjusted. After that I was OK.
The anxiety I am having is not about taking tamoxifen. I have the appt with my new MO next tuesday and I am having anxiety about that. Just hopeing my old MO did not steer me wrong in the no chemo dept. I called yesterday to see if He could see me this week but no openings, they will call me if they have a cancellation. Once I have that appt my anxiety should be fine because my questions will be answered, then I will know if the 4 am wake up call is tamoxifen or anxiety.
0 -
Sherry.. I see you had an oncotype score of 23 and no chemo, just thought I would share and tell you so did I and I didnt do chemo either. Mine was so messed up. I had ductal and lobular cancer. They sent out the first slide w/ductal came back 12 ok great... second slide they sent they THOUGHT was lobular was another part of the ductal was 23... same cancer 2 different onco scores.. lobular was low a 9 I think.. the question was what to do same tumor 2 completley different scores, my MO said and I also went for a second opinion at Georgtown and they both agreed that with all the other pathology the risks did not outweight the benefits.. I know its a scary decison I think about it too, hang in and I hope your appt relieves your anxiety!
JUNE WOW.loose teeth... I know what you mean I cant imagine how I would feel without the gaurd...yikes!
0 -
Hey ladies, I started Tamoxifen a couple weeks ago and have noticed I am getting very tired. My last two fill ups for reconstruction have left me sore and I have had a lot of stress the last little while. Just wondering if anyone else experienced being tired or if its from being sore and stressed.
0 -
tinkertude thanks for the info. Even though I really don't like my current MO I really do not think he has given me bad medical advice, but will feel much better when I hear the same thing from someone else. He does not communicate well and I am one that I like details. He likes to give me general anwers and it leaves me very frustrated. I feel like my MO will be a long term relationship and I don't want the frustration hence my seeing another one next week and hope I feel much better with him as he comes highly recommended.
0 -
Sherry I dont blame you at all!!! I felt the same way I had 2nd opinions on everything, dont stop until YOU are comfortable!!!
Keep us posted!!!
0 -
Sherry - Hope the appt with the new MO works out. It is important to find one you are comfortable with as this will be a long term relationship. You need someone who will give you the answers you need and in detail. I like details too. That was the problem with my RO - he thought he did not need to answer questions let alone in any detail. Finding out he left out off kinds of information.
I did not have the Oncotype dx testing done but am comfortable with the decision not to do chemo,. My MO said from the beginning it would not be needed and I trust what he said. Asked about not doing the Onco test and he said it is not always needed and can be trickyto get some insurance companies to pay for it since it is a really expensive test.
0 -
Re: the tamoxifen metabolizer test. My MO doesn't bother with it, feels it is inaccurate. So I asked how she can tell if the tamoxifen is working for me. Not through SEs like some have said (thank goodness, because as far as SEs go, I have little to none). She said she can tell by looking at my blood work, so that's enough validation for me.
0 -
heartnsoul76 good to know as I don't have many SE either.....Thanks!0
-
June: We change the clocks March 13th. Thank goodness! After this winter, I will NEVER complain about the summer heat again, even if I am getting hot flashes and have to stick my head in the freezer to cool off!!
0 -
Schipmom- Thank you!!!! I cannot wait as well and I say I wont complain, but heck we are from New England and everyone does it so well here.....he he
0 -
Jo- I feel so bad as you are having such a hard time these days......please know I am thinking of you and hope these darn SE go away!!!!0
-
Oh Man, Susan! I had to read your post twice, to see what was wrong with you....I was getting ready to tell you GET IN FAST!!!!!!!!! Yikes! At least you guys figured it out....It's so easy to blame Tamoxifen on every little squeak we get!
I made some Broccoli soup with a little butter, and a potato, & I'll throw in some thickened milk in a bit....I also made some Spanish rice with rice I browned in butter first...& added onions, garlic & green peppers!....And I made me a pork chop browned, then simmered in this sauce I had made...like that "505" sauce...It REALLY tastes good....DH just likes his fried...plain...nothing else on it.
It is so darned cold out! Like 10 degrees, & still snowing....I can hardly wait for Spring... All this cooking, you can tell how bored I am! Ha!0
