Mets to bone after 5 years - damn!

Orchid,

I'm so sorry to read about your recent dx, I'm currently awaiting results of an MRI to see if I have bone mets also after one suspicious area showed on a bone scan. I've had back pain for a while now.

I'm highly triple pos, did chemo,rads etc first time around and am now on arimidex since having an ooph in '06.   The arimidex along with early and sudden menopause has also left me with no sex drive at all.  I think this is a common problem with the A1's also.  I am currently four and a half years out and will feel as angry as you if my results are positive.  I just wanted to wish you the best and I can relate:)

Tricia xx

Ok, this is where I have to ask my stage IV sisters to explain something to me.  Being Triple neg, I have not researched or needed to know any specifics about the 5 years of additional meds that ER/PR positives get to take ( and I must admit, I have been very envious of that, as I have nothing else after all my treatment is done).  However, having been on the board since my diagnose last Feb. 2009, I have noticed that quite a few gals that are hormone positive seem to have a recurrence shortly after the 5 yrs. of meds. is up.  Can't they keep you on it so that you have a better chance of no recurrence, or are the meds something that can't be taken for longer than that.  I admit I am totally naive about this matter, so if someone could explain to me why you can't stay on these meds, I would greatly appreciate it.

Linda

Hi, I am certainly feeling the "tamoxifen pain", just like all of you.  No sex drive AT ALL.... one thing I do want to mention - I saw in a couple of earlier posts that oncs were putting some sisters on wellbutrin - wellbutrin is counterindicated with tamoxifen - it prevents tamox from metabolizing - so even though your sex life might get better - the tomoxifen stops working!  I was on wellbutrin and ended up being switched to Effexor just a couple of weeks ago. I think the loss of libido hurts more than the chemo and mastectemy put together.... Tammy

Linda-- About extending the use of estrogen blockers, Tamoxifen is problematic because it also can cause endometrial thickening which can lead to uterine cancer. That is why they take people off it after 5 years. The AI's are a different type of estrogen blocker and do not have this problem. But, as I understand it,  er+ tumors that have been estrogen-starved can eventually begin to find other ways of reproducing themselves, thus rendering estrogen blockers ineffective. This happened to one gal on the stage 4 boards and her doc put her on estrogen therapy for a few months as a decoy to see if it could lure the tumor back to its estrogen-sensitive ways. This "estrogen therapy" is pretty new. The idea is to follow it up with more AIs.

Orchid-- I am also on Zometa and have had no SE's to speak of from it. Smooth sailing, except for an itty-bitty pain in my shin the first two treatments. Probably now that your first treatment is under your belt it will get a lot better. About the weepiness, it has been happening to me too, although in the past few weeks has gotten a bit better. Everything and anything makes me cry.

Comingtoterms-- what I have heard is that Prozac and the SSRIs that are related to it can interfere with estrogen blockers. In the article I read,  Wellbutrin was not mentioned. My own experience has been that Prozac is a lot more effective in treating depression, though it also caused libido problems. Wellbutrin, which I am now on, is just the opposite. Gives the mojo a boost but not as good in lifting me out of melancholy. But since zero-estrogen set in at the end of June, mojo disappeared entirely. If I´m not gonna have a mojo anyway I wish I could go back on prozac, but it's on the no-no list. Sigh.

Lisa 

Lisa, I'm really interesting in the adding back estrogen.  Do you know how this person who is on estrogen is doing?

Linda,

I should have added that the uterine cancer risk is relatively small, something like 2 in a thousand women, but I think it increases with more time taking the drug. 

There was a long article in the New York Times just yesterday that painted a very rosy picture of Tamoxifen, claiming it reduced BC risk by 50%. It was a little unclear but it seemed they were talking about using it preventively, not in women who had already been treated, I am no doctor but 50% seemed high to me. It did not mention AI's.

Lisa 

Although being triple neg does not afford me the extra 5 years of meds as a precaution, I was curious for all my ER/PR + sisters.  Again, thank you for the info. 

Linda