Bottle 'o Tamoxifen

Yes, Runor, Peace! Sounds like a deal!

Michelle, I know that neighborhood well.  I used to go through there to dream of the day when I would be successful and have a nice house in a nice neighborhood!  I spent my high school days around 61st and Wolcott (just east of Damon)--the heart of the 'hood--Englewood, to be exact!  So, I guess by the time that breast cancer hit me I was already a survivor of sorts:) I do still have plenty of family in Chicago and visit often.  My sister lives on North Marine Drive (around 4200 North).  That's on a different planet from Englewood, and I tease her about "moving on up" all of time!

Pamela, thanks for joining the conversation.  If you've been here since May, then you've heard a lot of our discussions already.  I don't think I joined this thread until much later.  Back in May, I was still doing chemo and had my Taxol training wheels on---hadn't even started the hell of FAC by then!  

Hope works for me, but it is not without full knowledge of what it means to suffer.  I just try very hard to control my thoughts, because we all know how our thoughts can spiral downward into dark places if we allow it to happen. I've been afraid of the dark ever since I was a child. So, I just can't live there!

Best to you, Pamela, as you hop on board the T-train! I stared at the bottle for a little while after I picked up the prescription and then, one day, just started!

Hello and Happy New Year to All -

I haven't been here in quite some time. I have a quick question about tamoxifen and hair.

I've been on it for about a year with limited side effects - the usual hot flashes, joint pain and some leg swelling. Nothing horrendous and all certainly manageable given the alternative.

In the last couple of months I'm noticing a lot of hair loss at my temples. Not cool. Like the beginning of a receding hairline. Has anyone else had this experience? I did chemo and used cold caps - I finished about a year ago. I kept about 50% of my hair with the loss being mostly around my hairline. I thought it was growing back normally and was pretty pleased, until recently. My hair has come back really thick. Of course I've read that hair thinning is a side effect of tamoxifen but I don't see anything much about receding hairlines, per se. This is not going to work My imagination is getting the best of me over what may happen during the course of another 9-10 years. Oh my.

Thanks - so much love to all. May 2018 bring us all peace, joy and health.

Well, time to hop into this thread, I guess. I have an appt with my MO in a couple of weeks, and she says T is the next step on my journey. I am only beginning to process what that means. The eyelashes are growing back in, and the radiation burns are healing. Each new step seems to be loaded with a basket of new anxieties. I don't really even know what to be afraid of yet.

Well, one thing -- my MO switched me from Paxil to Effexor about 6 weeks ago. I am still trying to figure out how I feel about that. I just haven't felt quite right ever since, which is frustrating. About the time everyone is expecting me to feel better, I am simply not. My PCP and I are starting to tinker with dosages to see if that could make a difference. So that is my current struggle. And then, in a couple weeks, we'll be adding something new to the little chemistry set in my bathroom drawer. Yeah, the one where I used to keep my hairbrushes and clips and pretties....

Rhyfelwr, my MO just put me on Effexor last week. I know it takes time to notice a difference, but I haven’t noticed anything. And I still can’t sleep. Ugh.

I tried a split dose for a while and didn't notice any difference in the s/e's from just 20 mg all at once. I tried morning, night, midday. My bone pain never let up. I tried Effexor, Gabapebtin, Cymbalta. Nothing stopped the headaches (which could have been caused by gab) bone pain down neck, spine, arms, legs until very recently.

Hotflashes, joint pain, lack of libido, dry skin and thin hair continues. I fear that both elbows and right shoulder may be permanently damaged. I keep having steroid injections in them. Although, I'm taking a rest from Tamo right now, I am due ro see a new onco in March (insurance change) and hope I can try a different h/t drug that I can tolerate better. I'm the gal who never finished all the prescribed chemo or herceptin due to my body giving up on both. Guess I'm just a weak link.

Well, I've just started sleeping with soap, but it's a new lavender soap that I keep nearby for its scent. And it's pretty.

I've been taking Tamoxifen for over a year and have no side effects that I can attribute to it.

I've always had insomnia and somewhat dry skin. My hair isn't as thick as it was before chemo, so I'm not certain Tamoxifen has affected my hair. I had a bit of joint pain a month after I started Tamoxifen, but that lasted less than a month. I have no joint pain and never had bone pain. Neuropathy from chemo only lasted a few weeks.

After years of taking various pain meds, I'm happy to now only take Tamoxifen (20 mg) and supplements. After a mastectomy and chemo, Tamoxifen has been a cakewalk. I wish it could be as easy for everyone.

Ghionik: Try not to worry yet. Some people have absolutely zero side effects.

COMPLAINERS !?!?! Holy shit! Re-think the name calling! Posting here to say you have a problem sure as hell does not make you a complainer! No one should EVER feel that they can't speak their piece because someone else is going to run in, point a finger and chant complainer!, complainer! That ranks right up there with going to your boss to say you have a problem at work and he asks you if you are having your period and dismisses you as hysterical and female.

I do believe the title of this thread is Bottle O' Tamoxifen, not, We Worship At The Altar Of Tamoxifen.

All voices are equal and allowed or NONE are. Leave the labelling, tagging, name calling and passive aggressive coercion at home. People's experience with this drug is all over the map and having a bad time with it DOES NOT MAKE ANYONE A COMPLAINER!

You SHOULD take offense if someone calls you a complainer! Who here has any right, any authority, any power to name, categorize, minimize or belittle your experience? No one! Women don't come to this site for a sugar coated, sparkly, FAKE story. They come for YOUR story. And mine. And Michelle's-in Cornland. No one's voice, no one's story has ANY more validity than anyone else's!

Michelle is absolutely correct when she says some women sail right through tamoxifen without a second thought.

You are correct when you say you did pretty well and will have to find something else to blame forgetfulness on.

And I am correct when I say I am growing an impressive beard, have a weird bald spot on the front of my head and produce enough heat, in waves, day and night, to power a greenhouse.

Not a single one of us is a 'complainer' and that word has no room at a table where all are invited and welcomed, equally, to speak their truth.

Ladies

I am still around. I've been battling the flu this week and just didn't feel up to posting gmtoday...until now... Runor and Bluebird, when I read Michelle's post I knew where this conversation was headed...and to be fair, I felt that the term "complainer" marginalizes the legitimacy of real side effects reported by many women here.

Bottom line: to our newcomers, there's no need to worry in advance. I did that, and it turns out that I am doing well on Tamoxifen. You just never know. So enjoy today and deal with tomorrow when it arrives!

Thank you ladies! This will be mynew home on this site. ❤️

As far as the word “complaining” doesn’t scare me one bit. I’m clearly good at it. Lol

Thanks for the welcome! Xo

Am up to my 2nd week of Tamoxifen- and insomnia has kicked in

Only other side effect is positive- less oily skin- but the insomnia is a doozy, up from 3am this morning. Please don't ask me to make any complicated decisions... Where I live it's currently summer, so I am going to blame any sweating on the weather.

Trvler that sounds like one side effect I might enjoy.

I found that some of the side effects tapered off after a while. Like the leg cramps. At first they were very bad (in bed at night), but now it's way better. At first I was quite constipated but that got better too. So there is hope on the horizon. Keep notes. It will help you notice when effects fade away or when new ones come up. Over time this will help you develop an overall picture of how you are doing on the drug. So give it a little time.....

The leg cramps and constipation were the easiest things to fix for me. Magnesium for constipation and the second you feel a leg cramp, turn your toes towards your body and it stops them dead. I am sorry if I am being annoying to keep posting these tips but I do it in case someone hasn't read them and it can help. Hi Mollie!