Tamoxifen?

Nana60 - Did you do it?  I can remember my oncologist telling me to fill my prescription before I left the building and then take the first pill that night.  Well, I filled my prescription that day before leaving but I took the bottle home and stared at it for a couple of days before I took one.  One of the things that played back in my mind was my radiation oncologist saying she wanted my appointments scheduled as close together as possible so I could get through radiation and then begin Tamoxifen so I'd be protected.  She used a very concerned tone and I know she sees some sad situations in her line of work so that really impressed upon me that I needed to quit being a baby and do what they were telling me. 

Linda - Glad you are feeling good.  Did you notice the nausea after you took the Tamoxifen or the next day?  The only time I've noticed it, it was the next morning.  I seldom have a problem anymore but I still keep some diet 7up cold.  Is that your kitty in the photo?  I have a 3 month old kitten in my lap as I type.  He's so cute and silly. 

Helenap - I know what you mean about feeling fortunate.  When I was first diagnosed, I read that some feel life after cancer can be better than before, IF you let it.  For me, life is much better than before.  I so appreciate every day now.                 

Tamoxifen is only effective against er + cancer so if you are not ER positive you would hopefully not be taking tamoxifen

Mrs Beasley - Yep, I'm ER positive.   

Nana - So glad you jumped in with us!  Hopefully you won't notice any SEs at all. 

Linda - That is a darling kitty.  I want one of those scratching posts with the scooped shelf.  My cats love to lean against something when they nap.    

I'm a little over halfway through my rads.  I have my 3 mth supply of tamoxifen on my counter but haven't started it yet.  My MO says to take it, my surgeon said to wait and my RO said it really doesn't matter if I wait or not. I have waited mainly because I want my hair to grow in a little more first! I finished chemo in Nov, had surgery 2 weeks later and started rads mid Dec. so my hair hasn't had much time to grow. I am (was?) pre-menopausal...and the hot flashes with chemo were tolerable. And since I still have them, I don't suppose that would be much of an issue.  I have enjoyed reading all of the advice and suggestions. I will take the Tam though because recurrence scares me more than the SE of the drug. 

Just thought I would share my Tamoxifen experience... I too was terrified. I even put it off (for 3 months) till summer was over last year because I was afraid it would ruin my vacations. I even started with 10 mg instead of 20 mg because I was so scared of the SE's. I also read that in some places in Europe, they only take 5 mg/day, so I figured 10 mg was enough. I didn't have any new SE's at all. Six weeks ago, after a year of 10 mg/day, my onc convinced me to take 20 mg/day. I haven't noticed any difference. I had a lot of SE's from chemo and rads, so for me, Tamox has been the easiest part of my BC tx.

Have a great weekend!

Juli

avonrep: I too had DCIS-6mm. I was also fortunate and had clean margins after my lumpectomy. I just finished up with 33 radiation treatments, the last 5 were "boosts." Research and my medical "team" convinced me that much as I loathed to do this, it would be worthwhile.  I am ER positive, but declining tamoxifen due to a history of fibroids, cysts and other endometrial, ovarian and uterine issues that plague my mom, one of my sisters and myself.

These along with other "minor" side effects along with the very rare serious ramifications concern me more than the small  reduced risk of occurence in my contralateral breast would make me feel relieved. I think that you have to weigh the possibilities. With DCIS, I don't think that it is a clear cut decision. I think my decision would be different with an invasive tumor. Since there is no guarantee either way, it is a very personal individual decision. I have an appointment with my oncologist in February. She does not yet know my decision. I am actually surprised that her office has not yet called to find out why I haven't requested my prescription be sent in.

After research, I  also found it strange that she offered me a choice of Evista or Tamox as I am premenapausal. She is a researcher and affiliated with a well-thought of university-based hospital. I went off my birth control pill at my diagnosis of DCIS and I HAVE noticed a change in my overall hormonal type symptoms. (Goodbye mild cramp-light periods, nice skin, good sleep and predictable and short-lived PMS.) I hope that this also suggests that my estrogen levels without the Pill have decreased naturally. I also exercise consistently and eat healthily. However, I did that before my diagnosis...

Again, this is my decision, not meant to persuade either way-just to provide you the requested feedback.

I had DCIS and a lumpectomy with radiation 6 years ago.  I started Tamaxofin following radiation.  The only side effect I had was EXTREME depression.  I take prozac and am also a recovering alcoholic.  The Tamaxofin sent me into a black hole that had me seriously suicidal.  I mad e conscious choice to a) stop taking tamaxofin and b) drink instead of killing myself (gotta love the self medication! )

I survived the drinking (I did it for 3 weeks and got sober again), got the Tamoxofin out of my system, and was fine after that.  HOWEVER, I now was diagnosed with DCIS in the OTHER breast in 2 places and am now going to have a bi-lateral mastectomy with reconstruction.  

I don't regret my decision.  I was seriously suicidal - which is impossible to recover from (as opposed to DCIS which I will probably life after surgery).  I don't want to scare anyone.  I am an extreme case with a lot of other chemical things going on in my body.  Just be aware and don't go to the depths I did - especially if you're an alkie like me.   I'm lucky I got back to sobriety after drinking.

I quit taking tamoxifen after 4 years - I just felt crappy all of the time and my Onc feels quality of life is important. I got a massive 15cm cyst on my ovary that the gyn onc attributed to Tamoxifen  and had to have a total hysterectomy that really set me back - but I then I tried Aromasin - and had so many joint issues and pain that I then tried Femara- same thing only puffy and gaining weight too - and then went back on T for about a year. Right now I am flying without a net and sometimes it makes me nervous. I hit my 5 year cancerversary and am frankly sick of dealing with it. I exercise, try to eat right, don't drink much and kind of figure if it comes back it was going to anyway. Is this terrible? I want to live to see my boys get married and have grandchildren - that is important to me. I live in constant pain - they think it is fibromyalgia - so sometimes the idea of more pain and more hot flashes (mine are ungodly and seemingly endless)  - I'm rambling - just my take on this.

How are you ladies doing on Tamoxifen?  I have been totally miserable for the last 3 weeks.  I'm so tired all the time.  Not tired like from radiation either.  It's totally different and constant.  I can't seem to get enough sleep.  I'm having bloodwork done and seeing the onc next week.   Anyone else feeling like this? 

Linda603- I too have been tired..not wanting to get up in the am for a month now and I am about 8 or so weeks into Tamoxifen...starting my third box in a week so....but exercize helps, making myself get up and mobile helps....so does eating right and being busy..and stopping too....trying to be in bed by 11:15...which may sound late to some but is early for me usually....Hang in there ladies. The other train of Tamoxifen(Bottle o' Tamoxifen) is chock full of information as well.

This tiredness is really the only SE.  I have night sweats, but I've had those for a few years now.  They're no worse since being on Tamox.  I'm walking regularly, eating right, not gaining any weight (fingers crossed), just tired and sleeping too much!   I'm looking forward to a long talk with my onc. 

Hi Pam:   My first SE was nausea, so now I take the Tamox with food.  No nausea anymore.  The tiredness started around week 3 or 4, and doesn't seem to be getting any better.  I'm hoping that this SE will subside; one of the big questions I have for my doctor. 

I have been on Tamoxifen for the last 15 months. Side effects just a few hot flashes but very sporadic, what is a little challenging for me is that  my periods are very crazy. Sometimes two periods in one month, sometimes two months without anyone,  and for this reason  my GYN already made two biopsies in the last 15 months but thanks God everything come back normal.

Hi Lindy:  I'm hoping that this tiredness will go away with time, as yours seems to have done.  Had my blood drawn this morning, and will see the onc in a few days for the results.   I hope she tells me that what I'm feeling will level off and take care of itself.