Topic: Getting nervous again;no side effects

YES, I am.

mamhop - I've been on tamox for 14 months and the only thing I currently suffer from is joint pain. In the beginning I had hot flashes and sleep problems but they have faded. I went a long time with no hot flashes at all and now they have come back but I don't have them that often (not even one a day).

I think a lot of women take tamox without heavy SEs.

Hi,

If I didn't have any SEs, I would also worry.  But let me tell you that I am an extensive metabolizer, and my side effects went away after a while.  I think that the research shows that if you have SEs, even if they go away after a while, then you are probably metabolizing.  I had major hot flashes that went away after a few months, and I have 2 wild type alleles.  If I didn't have any SEs, I would find a way to get the test.  I know there's nothing else available, but if I were premenopausal, I might consider ovarian ablation, hysterectomy, etc. if I knew I wasn't metabolizing.  But that's just me.  I personally would be scared, but you are you and I am me.

Best of luck to you.

Cheryl

Thanks Cheryl -- I don't think we are different -- I am scared that it isn't working.   I didn't have hot flashes that went away -- I never had them --   I may have had a few in total, but they are mild -- nothing like what some women describe.   So I might consider some type of ovarian suppression as well or just get rid of them.   My onc does not seem to think this is necessary......

Your diagnosis is very similar to mine -- I am also a stage 1 (.3cm) and grade 1, but I am also pure tubular which is supposed to be favorable --that's why I want to make sure the tamoxifen is working.

M.

M,

I had some massive hotflashes at night when I first started tamox-- but then again, I had night sweats on the Pill, too, so who knows?  Otherwise, I have had ZERO SEs ... no remarkable joint pain (hey, I'm 50 and I have arthritis, who can tell??), no nothing.  Like Rose and you, I have noticed an astonishing lack of tenderness in my breasts before my period -- they used to feel like water balloons and hurt like crazy (even though I took vitamin E).  I am now surprised by my period because I have no symptoms!

I also have a slight thickening of my endometrium, seen on a recent tvu/s.  Other than that, it's just another pill I take with the handful of meds I take at night. 

My mom, who had a lumpectomy and rads for DCIS grade 2 at age 81 (yes, she was a very pissed-off old lady!), took tamoxifen for 5 years afterwards.  She's a year out of taking tamox and will be 88 in November and is doing just fine.  She had ZERO SEs, too.

Good luck!

Layne

OK ladies, I guess some of us just got lucky in the side effect department? I think I actually feel better on tamoxifen.....no mood swings, no swollen sore boobs before my period..... It's so nice to talk to other people in the same boat with the same concerns!
Kimber

Hi,

I've been on Tamoxifen for 15 months and I started with no SE's which turned into hot flashes for about 6 months and now no SE's again.  I see my oncologist in July and he may put me on aromasin since it will be a year in July of no periods.  I started with Tamoxifen shortly after turning 50.  I think we all worry about the effectiveness of drugs.  I guess we need to have faith in our doctors but sometimes it's hard.  Good luck with your continued treatment.

Nancy

Mamhop,

I have to agree with Sam.  I think with regards to menopausal type symptoms, Tamox brings out the genetic pre-disposition.  For example, my Mom didn't have hot flashes, and she didn't gain weight in menopause.  I have very mild "flushes" and I've lost some weight since starting the tamox.  Now, the other SE's I've experienced are still a mystery. 

All that being said, if I had no SE's, I would probably worry as well.  I think you are on the right track to continue to keep it as a point of discussion with your onc.

Barbie

HI

Anyone on Tamoxifen and zoladex? I have the hot flashes for about 8 weeks, but nothing since, and I've just got my period. SO am totally paranoid that perhaps the nurse did not inject the zoladex properly.... Anyone else experiencing something similar on these meds?

Regards

SIONA

Thanks Roxy

Are you on Zoladex as well?

Regards

Siona

Ive been on tamox for about 15 months and have very few se's from day one...I had a complete hyterectomy and tried Arimidex but only lasted four months as the se's were too painful....

I worry that the tamox isnt working because of no se's but on the other hand I think it is because I didnt have se's with my hyterectomy either and I was no where near being in menopause before that surgery....

Like another lady here says about this entire situation that brings us all together here......"ITS A CRAP SHOOT!!!!!"...

Jule

Well, Rose -- I'll take those SEs happily!  (And I've just been assuming that it's working anyway!)  It's nice not to have big, painful, stretched water balloons on my chest once a month! 

Jule, the other lady is also right -- it IS a crapshoot! We do what we can and grope around in the dark, hope that we're doing the right thing and forge ahead.  That's all we can do!

Layne

Rose,
You are correct. When people ask me if I have any side effects, I never think to tell them "well, my boobs are smaller and I don't get a period...."
So you are right - I am having side effects.
I see you are in the DC area - I am in Northern VA.
Kimber

We are all so different - I'm one of the older ones on tamoxifen - I had already been through a natural menopause, with absolutely no problems - when I told friends I didn't know if I'd had a hot flash yet, they all said you'll know!

I am on tamox instead of an AI because of osteoporosis and high cholesterol.

My oncologist said that because of my grade, and the fact that my tumor was so contained - everything was all in just one spot, and there was no hint of anything else, that not taking anything was a reasonable alternative.

THAT was too scary - so I'm trying tamoxifen for 2 years. So far, really, my temperature controls are a little wobbly - I'm warm longer than I should be after exercise, and then I get seriously chilled, I am having a little more trouble sleeping. This feels like what menopause was.

But hey, I'm still on antibiotics from the abcess, and I have a drain in my boob!

I think that maybe the trick is to avoid the medications on the list, and not eat grapefruit! I may offer to pay for the test myself, if onc will just write script, just for peace of mind, but...

Just now, I am doing everything that I can do to take care of myself, and to have a healthy life. I just felt like it was time to cut myself a break.