Tamoxifen Questions

[LTC]

Oh I so hope I'm posting this in the correct place. Just posted my Newbie Intro & now for my question. Below is a re-post from Susan G Komen for the Cure Discussion Forum.

I've been on the *&$#! Tamoxifen for exactly 1 month now. So far, no hot flashes. Not really. For a couple of nights after being on it a week or so, I was kinda hot when I woke up in the morning. But no flashes. Have seen an increase in vaginal discharge. No period. So far my biggest issue is over the last several days, my skin has gotten so dry & tissuey lookin & I'm hatin it! Starting to look like my grandmother!!! Anyone hear of this? I know estrogen affects collagen, so yeah, I'm not very happy with that. I've always looked much younger than my age. Hate to think what I'll look like at the end of 5 frickin years of this. And no, I don't wanna let vanity dictate how I care for my health...yet I do come by my vanity honest....My grandmother wouldn't even take out the trash without her eyebrows on! LOL!

So my question: Since these seem to be the only S/E's I'm experiencing, I wonder if I'm getting the full benefit. Wonder if my Onc would do that Tamoxifen Resistance test for me....I'm ER NEGATIVE. Only taking Tamoxifen cause the PR was WEAKLY positive - 9%. Just wonder if I even need to take this stuff.

What would y'all do? Ask for Resistance test? Really look forward to y'alls opinions here!

[tricia keegan]

Hi,

You posted in the right place and I'm sure someone can offer you advice here xx

[Jackie07]

LTC,

Sorry for the side effects you are experiencing. The dry skin/tissue seem to be related to menopause and not directly to Tamoxifen.

I've had my 5 years worth of Tamoxifen. My BC was weakly ER + to begin with, just 5%. When I had the recurrence (the surgeon had missed a small chunk of cancer tissue and it was mistaken as 'scar tissue' for four years), I requested for Tamoxifen after my chemo because nobody had told me I had become ER-. This was told by the nurse practitioner in March when I had asked for Arimatease Inhibitor (another type of drug for ER+ patients who are menopausal) after my prophylactic hysterectomy/oophorectomy. It's really because 5% ER+ is considered by some doctors as ER-.

However, just 4 months later, I received a prescription with a note from my oncologist: "just wanted to be sure that you are still taking Tamoxifen." So I went on the National Library of Medicine Database - PubMed - and located the most current research articles on the subject. It turned out that based on statistics, continuing Tamoxifen after 5 years is good for the bones.

The article also cited statistics that Tamoxifen reduces recurrence even for patients who are not ER+, but tested PR+.

[Jackie07]

Below is the link to Tamoxifen. No. 10 explains its effect on menopause:

http://www.cancer.gov/cancertopics/f...rapy/tamoxifen

[LTC]

Hi Jackie! Thanks for that info. I'm now wondering if I'm in menopause.....6 months after chemo ended, I had a period....I guess it was a period....then another one a couple of months after that....but nothin since August. Maybe now an AI would be better....I dunno. But I spoke to my Onc yesterday, & I guess due to my age, 41 now, he feels Tamoxifen is the best thing for me. So I'm gonna stick with it & I guess feel thankful that I'm not having terrible uncomfortable side effects. And I do sorta like the idea of still being "in treatment" in a way, as long as I'm taking it.

[harrie]

I was on Tamoxifen for 5 yrs and was around 46 when i started. I had no hot flashes and actually no visible sign of any changes.

[LTC]

Hi Maryanne! Or MaryAnne? Thanks for sharing that. I want that to be my experience too. I want to be able to take the full course of Tamoxifen cause it kinda makes me feel more confident, to still be treating the bc. Ya know?

[harrie]

Good luck. I hope it is tolerated well so you can do the whole 5 yrs.
I think I am just lucky with the meds that I take. I had hardly any side effects from the herceptin too.