Starting Tamoxifen - Spring 2015

Katy,

Thank you for your heart-felt deep kindness. It appears that I am not alone in my situation, you're experiencing the same aloneness.

Though my b/f has been supportive he isn't the snuggly/cuddly "I'll do anything to help you" kind of person. More, he's the type that will light a path and hope I follow it; and if I don't, then perhaps I'm not strong enough for him, but definitely not strong enough for myself.

I used to be swamped in those feelings of self-pity and I didn't like it. I didn't want to be weak. My self-pity was washed away once I learned how to live with this guy. I became more self reliant and I am grateful for that personal strength. He and his hardness have been very good for me. At this point in my life I could live without him, but I don't want to. I know how hard it is to deal with depression on one's own and that is what scares me.

Moving to another country, I left my family and friends back home. He is all I have, besides myself. So I do feel that you understand what I am going through.

I don't believe that his support is illusionary; rather, it's the kind of support that encourages me to be more self sufficient. Sure, he's selfish; the most selfish person I've ever met. But his good outweighs the bad, at least for now.

Thank you for your reply. I too hope to find friendship and support on these pages.

-Jennifer

Hi Katy,

I might have been a little dramatic in my post when I first mentioned my guy and his lack of desire to be with someone emotional and/or depressed. Thanks for your feedback; in the future I will be less vague.

And thanks for your kindness, again. I too have a four-legged friend that is wonderful love and companionship for me. She is the best cat I've ever known! If only humans could be as loving and loyal as our pets!

I have one question, perhaps you can help me with. Is it best for one to start tamoxifen while on one's period or wait until after? I have one day before my period starts, I've got the tamoxifen and am hesitant to start it. Just wondering if you knew.

And yes, I remember my pig latin! I love that tag and I bet your little man is happy to wear it.

Jennifer

Will let you know, Katy.

It's a holiday up here in Canada so I'll phone tomorrow.

-J

Hi Ladies!
I started Tamoxifen last June or July, can't remember. But, I wanted to tell you, I had surgery, 7 weeks of rads and Tamoxifen. Of everything, I was most afraid of the Tamoxifen. Well, my only SE has been weight loss, in fact I was sick for 3 months another SE actually is it made my asthma worse when I got sick last fall. Anyhow, initially no one could figure out why I was losing weight, and in the end it was the Tamoxifen. I originally lost about 14lbs because of being sick also, but I have been steady at a 10lb loss, my new set point. I am thin to begin with and it bothered me initially, but I am used to it now and am thankful that is the only SE.

I wanted to add a positive story as not everyone experiences the horrible SE's and I am one of those who was petrified and in the end it has been smooth sailing, almost one year.

Good Luck!

Jennifer- thanks for the follow up- good to know. And good to hear from you as well!

Good luck with SEless Tamox!

Welcome to the "club" fighterinpink! Sorry you had to join, but really pleased you are here with us, and seeing that you are not alone !

Hello. I may not wind up starting until it's technically summer, but I expect to join you after my last chemo round in June. Thanks for the comments so far. Anyone doing tamoxifen and radiation at the same time?

Hi Ksusan and perfectlyimperfect! Hope you don't get any SE's from the pills as well.

I have still not gotten myself a handheld fan, but I have started taking the cold pack I got after surgery and keeping it next to my bed. If it is good and frozen it will still be cold at 2 am when I catch fire (it's usually around then) and I just roll over, grab it, and stick it on my head. Anybody else got any ideas? So far I have only had the 'power surges' and some sleeplessness (which may be related) that's all I've got so far...

Hey Piscean,

SO SORRY to hear of your weight gain. You're so right- after this, weight gain???! Why can't a side effect from EVERYTHING BC related be "weight loss- definite"? HAHA- Yes, I guess awareness is your first step. It's not easy. That's what's been holding me back from actually FILLING my Rx- met w/ Med Oncol 5/20 after March lumpect and 20 radiation, which were not bad at all.

But I'm so paranoid to gain any more weight I've been chicken to start Tamox. My med oncol says my DCIS was so low that it is my choice- he said I'd lessen my risk of recurrence from like 10% down to 8%. Said if I wanted to give it a try it was up to me.

Teri you sound just like me. I am paranoid about weight gain but haven't had any so far. I have stiff knees and can't decide if it's from my starting running (see weight gain paranoia) or Tamox or just plain getting older. Hot flashes every night which sucks during the summer. Generally I sleep all right if it's cool or cold at night, and not if it's warm. This is going to be fun as summer heats up...

Piscean- the risk and reduction of risk depends case by case.

After my bmx, with no further treatment my risk wax 30%. If I did Tamox 5 years it reduced it to 20%. Chemo added only 4-5% but I wanted to do everything I could if I could tolerate it. Also, knowing I might not do well on HT, them chemo would be my ONLY defense

So my current risk of recurrence assuming I complete all recommended tx is still about 15%. Seems pretty high tosomeone with a relatively small tumor, stage 1, no nodes and clean margins. This shit is scary. I'm not shopping for the minimum treatment. I ann asking to bd aggressive. Just me.. Given my numbers.

I didn't think Tamoxifen was supposed to cause joint pain...just the AIs.

Hi everyone. Thank you all for your openness...I have learned a lot from you. I have been informed that I am high risk after a couple of benign biopsies but my doctor suggested that I should think about going on tamoxifen. When I read up on it (same precautions for Arimidex), the precautions stated that no one else should come into contact with the bodily fluids of the user, including washing laundry separately, due to the ingredients being secreted through bodily fluids. I take this to mean no genital contact of any kind that is not protected and could even mean kissing. To those of you who are taking it, do you know anything about these precautions? How do you deal with these limitations for five years or more, especially in context of an intimate relationship with a husband? I did ask this question in a different post but thought you all might have some insight. Thank you!

Standbyme, ask your oncologist. I read some things about chemo from the American Cancer Society that seemed to suggest I should change the sheets every night and pee at an unshared location. My MO laughed and talked about overgeneralization, pointing out that the clinic has toilets and that during some heavy duty leukemia treatments, some more precautions are required, but not for BC (other than being careful the first 48 hours and using condoms for intercourse).