Tamoxifen?

Lindy137

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.                 

     

    

Linda603

Lindy:  The nausea would hit within an hour of taking the pill.  Since I started taking it with food, no nausea whatsoever.   That's my girlfriend's new kitty..isn't she adorable.  I have a cat, she's about 14 years old.  

Linda

mrsbeasley38

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

Nana60

Lindy: I did it. I have to admit that I only took 1/2 for the first couple of nights. (I eat some peanut butter first and take the tamox with my vitamins.) So far I have not noticed any SE. I really love your positive attitude!

Lindy137

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.    

Lindy137

Cinnamonsmile - I also had a general surgeon (rather than a breast surgeon) but he admitted he did not know a lot about what an oncologist recommends and why.  He knows what the treatments and medications do to the body of course, but he didn't know the details of what is used when and why.  I guess your surgeon had feelings and decided just to throw them out there.  I think you are right, your oncologist does this very thing day in and day out so he is going to look at many different factors to determine if he feels you should take Tamoxifen.  I admire how brave you are with your decision.          

SKW0416

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. 

Lindy137

Hi Susan - I find it so strange that doctors don't agree on if we should be taking T during radiation or not.  There have been so many advances with bc, you'd think it would be a little more concrete.  

Juli50

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 just had surgery 10 days ago for DCIS on my left breast. It was 1.5cm grade 2. It was totally removed and the margins were clear. My surgeon suggest radiation therapy and tamoxifen. I will need six weeks, 5 days a week of radiation. I am a total mess. My mother had endometrial cancer and I have had issues with fibroids and cysts. In reading the side effects of the tamoxifen I am really concerned with developing uterine cancer. Just wondering if anyone did not take the tamoxifen and had only radiation. I don't want all those side effects! I really need some feedback.

clare2

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.

Jelson

There is an interesting article on the BCO home page at

http://www.breastcancer.org/treatment/hormonal/new_research/20101207.jsp

about the benefits of radiation and tamoxifen for women with DCIS. Although I haven't had unpleasant se from Tamoxifen, my endometrial lining thickened enough last year for a D&C to be recommended. I am going in for an appt next week to see if I need another one - I am not sure if my gynocologist is just being hyper cautious or what. In any event, I need to weigh the risks of yearly D&Cs with the benefits of Tamoxifen, which for me, based on the article above, might not be as great as I had originally assumed. So I plan to discuss this article with my Medical Oncologist at my next appt.

Julie E

Nana60

Jelson - thanks for posting the link. I have been on Tamox for almost 2 weeks now, with no SE so far. I don't know what took me so long to start taking it. It hasn't been bad at all and I hope it continues this way!

NotAfraid

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.

NotAfraid

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.

RALI131

I too have reservations about taking Tamoxifen.  I had clean margins after my lumpectomy (DCIS, Stage 0) and 7 weeks of radiation treatment.  Still struggling with this decision because of fibroids.  Would appreciate any other information you care to share.  Thanks, I am happy to find you in this forum and hope to continue discussions.  THANKS! 

Ellie1959

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.

Lindy137

Ellie - Wouldn't you be considered finished with Tamoxifen now since 5 years have passed?   

Linda603

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? 

Nana60

Hi Linda603. Surprisingly, I have not had a lot of SE. I would say the worst is not wanting to get up in the morning (I am usually an easy early riser) and eating a bit more than usual. But, nothing really too bad. That makes me worry that it's not working for me! Please keep us posted on how you are doing.

Sandeeonherown

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.

CTMOM1234

http://www.medpagetoday.com/Oncology/BreastCancer/23792

" ... Tamoxifen's benefits were seen only in women who got no radiotherapy, but radiation benefited women regardless of tamoxifen use and without an additional benefit from combination."

This is just 1 recent study, but worth reading for those of you who are deciding tamoxifen or no tamoxifen. I chose lumpectomy and rads and no tamoxifen.

Linda603

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. 

pamallen

I just started Tamoxifin a week ago and have not noticed any side effects so far.  Just curious how long you ladies were taking it before the SE showed up?  I was really scared about starting it but so far so good.

Linda603

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. 

ferbevi2001

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.

ferbevi2001

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.

Lindy137

Hi Linda - I went through a period of feeling more tired than usual too but I don't notice it as much any more.  The body aches aren't nearly as bad either.  My lower back and calves really bothered me in the evenings for awhile, but it's seldom now.  I still don't feel like working out like I should, but that is just me.  Our workout equipment is out in our garage and it is still pretty chilly here so I use that for my excuse.  My job is crazy busy so I don't have too much slug time.       

Pam - I didn't feel any side effects for a number of weeks.  First it was nausea, then some body aches, but nothing too bad.  Had some bad headaches for a couple of months, but I'm not sure that was the Tamoxifen.          

I started taking Tamoxifen on Labor Day Weekend of 2010 if that helps anyone guess when things might level off a bit.  It really is a guess.  Hang in there!             

Linda603

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. 

Lindy137

Linda - I'm curious if your onc will admit that T tends to make slugs out of some of us.  My onc answers my questions SO carefully.  I can understand that he is in a tough position.  Most of his clients are at their emotional worst and then he gets to try to convince them to take nasty drugs when they aren't even back to a normal life yet.  Not fun for either party involved.   

Hopefully your system will adjust to the medication and you'll be more like your old self soon.  For me, the second and third month were the worst.  By the time I went to my three-month follow up, the majority of my SEs were gone.  Others have said their SEs came and went so I'm guessing I'm not off this roller coster yet, but things certainly are down to a dull roar and I like that a lot.            

I'm thinking positive thoughts for you.  Let us know what your onc says.