Starting 2015 with Tamoxifien

Just got my paper script yesterday and dropped it off at the pharmacy to pick up this evening.  I have had hot flashes since last March when I was diagnosed with B/C and the onco took away my HRT (Premarin). I've not only had a complete hysterectomy but also am post menopausal with osteoporosis thrown in so my onco is starting me on Tamoxifen instead of Arimidex since T is better for the bones than A. Many of the side effects I've read about from taking T - I'm already experiencing from side effects of TCH.  Stiff/achy joints and hot flashes being my new BFF's these days.  I'm wondering how T can make it much worse and hoping at the very least, I won't see any difference.  I've read that some people have insomnia from T so take it in the morning and also have read that others take it at night because it makes them sleepy.  AARRRGGG!!!!   I guess we will figure it out.....

I've already gotten through 2 lumpectomies, 4 rounds of TCH and 24 full breast rads + 12 boosts.

I was supposed to complete 1 year of Herceptin (for HER2+ tumor) but that has been stopped short at 6 months because it damaged my heart (which I understand is pretty common) so now I am taking 2 heart meds and being monitored for that.  Hoping my heart recovers but even so, my doctor will not resume the Herceptin since it is so risky for me.  You need your heart to live - cancer or no cancer.

Seems like a little breast cancer is no longer my favorite worry.

Hello! I started tamoxifen on my 48th birthday, November 17. I found out that same day that my oncotype score was 17 and no chemo was recommended. I was on cloud nine. I feel good and haven't had any terrible SE from the tamoxifen. Hot flashes, but I was having those before. I know it can take time for SE to show up but I believe tamoxifen is my friend and helping me to stay cancer free so I'm all on board with it. :-!

I started Tamoxifen December 17th. My only SE so far is that some of my warm flushes have turned into hot flashes. The warm flushes started a few months ago when the Chemo threw me into menopause. When I told my MO about my warm flushes being more intense now, she said that was normal with Tamoxifen. Its interesting that people said it makes them sleepy. I take mine at night. Now that I think about it, I get sleepy too. I just figured it was because I take it about 10:30 which is close to my bedtime. I sure hope I'm one that doesn't get too many side effects.

Nancy - I just read another thread in which someone posted that their heart damage reversed.  I hope I have the same prognosis.  Either way, I won't be getting anymore Herceptin so can't wait to get rid of the port.

mama darling,

I will be taking Tamoxifen starting on the 13th of this month. I will update you and let u know what is going on.

I started on Monday 1/5/2015. So far so good. How about you? How long do side effects take to show up? Or i guess it is different for everyone?

Hi fellow Tamoxifenians! Thanks for alerting me to this group CAS4!  I was told by my RO to wait to finish rads before starting Tamoxifen and I finished on Jan. 5th...but I've been putting it off...I'm glad that some of you have said that the SE's aren't that bad.  I was put into chemopause and have had some warm flashes...I think that they will get worse.  I was told to take it at night?? Can't remember why...  Interesting idea to split the dose in half...I'm going to ask about that at my next appointment. 

 I am going to pick up the prescription tomorrow and start!  Onward and upward, ladies :-)

I definitely think all my joint issues are chemo related, definitely! I wake up in am and can barely move. Stiff as a board all over- takes 20 min of moving to loosen up. We've got 4 big dogs so walking them all several times a day helps me. Weren't there before and I have friends that didn't to hormone therapy that said the aches n pains have lasted yrs after chemo. Sooo that's cool? I'm at MDA medical center. I grew up here but now live in Wyoming- I moved back 10 months ago when I was diagnosed, my husband flies back and forth, but really it's just me and the pups. I do sometimes get ankle or knee aches at night, rarely is it arms, usually pelvis down.I had my port removed last Monday- was super easy! Took lots of video and I did request "relaxation" med which i recommend only bc why not? They give you oral versed. You have to have someone with you, they will not let you drive. Don't every worry about blood lab time assignments- I've gottn to know several of the nurses personally and they say just come whenever. Try to do the port last, if u get versed ur foggy after- I just got a half dose.

hi my fellow tamoxifenittes!

I will be taking it too, after rads, so mid feb is my start. I am premeno, had my uterus removed in 2010, so still have ovaries. My cancer is only very weakly estrogen receptive. I have been very discouraged by other ladies that suffer terrible SEs from it, so this is encouraging. i may switch from lexapro to effexor for flashes, i have none yet, but do have stiffness in the joints.

I will post and report my SEs, andam interested in how we all will do....hope it is minimal for all!

Hi everyone. I took my first Tamoxifen today. I have been on the fence about whether to take or not but my MO wants me to try it for a month or so. If side-effects are bothersome I can stop. My biggest concern is cataracts, but she said I have them already so no big deal. We'll see

Blownaway looks like we are getting our ports out at about the same time. Mine is on the 21st, but they make it a major surgery - knocked completely out and all. It's not until 1: 00 pm and no eating or drinking. Bleh I am not good at that lol.

I see many of you starting tamoxifen after rads. My MO is starting me at the same time. Wonder why some wait and some don't. It's fine be me I actually want to start tamoxifen. I may change my mind later lol.

Nancy

oh thanks MagicalBean - hoping none of us have side effects from any of it lol

Nancy

blownaway. Do port removal first- get it over with- I was foggy for about 30 min after but I did have appointments later and did just fine. Go ahead though and msg your Chemo Oncol that you are anxious about the procedure so the order will be in place for the Versed. I got cherry liquid- it was horrible, and fabulous all at the same time. 😉 but you will need someone with you or they won't do removal. I felt rather foolish being wheeled around by my spouse, whom I've learned is a horrible wheelchair driver- he took out a dozen people and slammed me into countless corners. It's no wonder the fun drugs wore off quickly!

Took 2nd Tamox at 8 last night. In bed at 11 and read till 1215- sprung awake an hr ago- don't know if an SE can kick in this quickly. I had ridiculous insomnia during chemo. I'm having mild warm flashes tonight. Haven't had those in awhile-my last chemo was October 13- I just turned the floor tower fan on and facing me on med high and kicked the ac from 68 to 62 so this all seems familiar....but I am-can't-blink-wide-awake- Effexor has had me going into mini comas for 12-15 hours for two weeks so this is all very different. Crap.

I did sign up for the free 12 week program at my local Y- the Livestrong Program open to all cancer survivors- loathe that phrase- everyone is a survivor- veterans is what a friend of mine calls us- immense studies out on how much yoga and Hatha breathing/postures help women on Tamoxifen/AIs. I guess I'm going back to yoga- I should have anyway in this process. Good Morning Everyone

Cas4 - right after I have the port removed, I have an echocardiogram scheduled, then I see the cardologist so I can't get too much happy drug. Do they apply a bandage? If so, I hope it won't interfere with the echo. Was there very much pain afterwards?

Did you have to go to a pre-assessment appointment before the port removal? They had that scheduled a few days in advance and I talked them into doing it 1 hour before the removal. I try to load up my appts in 1 day so that I miss less work. Makes for a long day.

Cas4 - Hubby will be with me. I was just concerned about having it done early in the day and still having a day full of cardiology appointments and being in pain.  Wouldn't want stress/pain/drugs to effect my echo and other tests.  Tried to get the port removal moved to the end of the day instead of beginning but they only do it in the morning at MDA.  I talked them into letting me do my pre-assessment 1 hour before the procedure.  They relented because they have a recent chest X-ray on file and I promised to have labs done at least 2 hours before the pre-assessment.  Trying not to take off work so much because I would like to spend more of my vacation time on vacation instead of at the medical center in 2015.