Bottle 'o Tamoxifen

Thanks Beaverntx and Runor for sharing your experiences. I think I will continue with the whole pill at night for another week, then I am going to investigate the 10 mg twice a day route. I have not seen any info on how the drug metabolizes or if there is a fall off, say after 18 hrs or something like that. Who knows the twice a day may make me nuts. But worth the investigation.

so tamoxifen causes clots by increasing levels of estrogen in the blood. The higher estrogen levels are because the tamoxifen is blocking the estrogen from being used at the cellular level. This may (or may not) cause additional estrogen to be produced. With or without additional estrogen production, there is excess estrogen and it basically can make your blood cells sticky. Too many stick together and voila! A clot is formed. If you’re already at risk for clots I’d be very leery about taking tamoxifen. Even on a blood thinner. You’ve mentioned afib but not if you’ve had a clot that you took blood thinners for in the past. If you’ve had an actual clot in the past, you’re not supposed to take tamoxifen as it’s a sign that your blood may already trend toward being a little sticky. I think I’d have to weigh risk of bone loss over the next year vs my age, my overall health/life expectancy, and risk of deadly clot on tamoxifen given the afib or risk of recurrence/mets if you take nothing. If I chose to take tamoxifen anyway, I’d drive definitely add one of the newer anti-clot meds (Xarelto or Eliquis) as far less chance of developing uncontrollable bleeds/bruising. Hope this helps

Oh Sara I hope you are feeling better soon, darn kids always wanting to share. lol Keep an eye on the crying break downs, it is a side effect of Tamoxifen to cause depression - the drug just keeps on giving! If you find yourself getting worse call the doctor and come vent to us, pm me if need be I am just a click away and always have an "ear" for you. Hopefully if there are cysts they can get rid of them and the pain they with them!

The twins are working on a model and google slide presentation of some part of the body. DS1 is doing the Digestive System and DS2 is doing the Circulatory. Last week we built the models, today they need to finish up the Google slide part for presentations this week.

As for the Big T - my feet are doing there wonderful cramping, but hey no hot flashes so there is a bright side I guess. I had blood work done the other day and the numbers are dropping, pointing to anemia. Now to find out why I am anemic, starting with a nasty fecal test! Mailing poop through the mail - something wrong with that! The things we have to do to make sure we are ok. I am finding I am so tired lately, not sure if it's the Tamoxifen (going back on it) or the anemia. I have zero energy to do anything, I dream of the day when my energy returns and I don't have to go to bed before my kids or take naps in the afternoon! lol

Keep us posted on how things are going Sara.

xxx

I try very hard to fight the down days. But last night, when Hub and I were watching tv and my damn leg cramped up, I lost it. It didn't just cramp up for a minute and then ease off. Oh no. We were in for a good 10 minutes of unrelenting pain that no amount of walking, moving, rubbing, POUNDING, flexing was going to fix. It buckled me over at the waist because everything from knee to groin was in spasm. Hub is looking at me like I am making it up, can it really hurt that bad that you are gasping and moaning.

And then I cried. I just burst into tears. I have had it with this bullshit. Fuck this. These aren't leg cramps, this is ripping muscle off bone. This leaves me unable to walk normally for days. Over and over that same muscle threatens. I live in FEAR of being in a restaurant or shop or driving when that happens, because the pain is blinding and desperate. "Tamoxifen may have some side effects." Are you KIDDING me with this shit?! This is a threat to my own safety and the safety of others should this ever happen when I'm driving !

I am tired. I am stiff. My body has aged. My joints creak and my muscles spasm and I hate that life is not lived from the perspective of all the life I have yet to live, but the death I have waiting for me. Yeah, yeah, I could live to a ripe old age. I would have much preferred to live it without visions of death dancing in my head. I get up every day and act normal. Do the normal stuff. Live life pretty much like I did before. Only I don't FEEL like I did before. And just to keep me from ever getting too comfortable, some unseen hand sinks its claws into a muscle in my leg and shakes me like a dog with a rat.

I am scared to go to bed. Scared to roll over or change position. Scared of my own body for so many reasons. I have proof in more than one way that it cannot be trusted.

Pickles. Pickle juice. The football coaches and soccer coaches swear by it. So I’m trying it. Anything to stop the leg cramps and foot cramps. It’s better. Not gone but better.

In the spring when I was cramping like this it was anemia. Very low iron. Got two infusions. They seemed to help. But they said to expect it to come back.

Rumor, I seriously, physically, feel your pain. I wish I had a better answer than iron infusions and the hope of a miracle through pickle juice. But it’s all I have.

I’m talking to my MO tomorrow when I get bloodwork and all that done for my3 month check. Something’s gotta give

Vampeyes, my hub did not SAY that he doubted my pain, just watched me hobble, gasp and pound my leg as if I was a circus side show. Which, I suppose, I kind of was. He can be a bit thick but is not intentionally cruel. It's like the whole cancer bullshit is foreign to him. An event he can't grasp, can't identify with. And if I'm being honest until it was me on the receiving end of a lumpectomy and radiation and lymphedema and leg cramps and chin hairs - I could not have identified with it either. And now I can't UNidentify with it. In a serious funk the last few days. Serious funk.

Runor- my DH is a fix it kind of guy. If it needs "fixing" he can fit. The one thing he can't fix is me and I think that makes the BC and LE journey hard for him. He's been a trooper and gone above and beyond to help deal with this crap. (Especially the damn LE it's been my biggest issue!)

Hi Sara, hope you are feeling better. I have days like that also. I work in a dorm and I cried all day 2 weeks ago. It was horrible, those poor residents had no idea what to do.

My hubby is not a good "supporter " unless i directly tell him what I need. Then he is right there. Some times it sucks, but he was like that when we got married so I shouldn't expect him to change. I cry all the time and he looks at me and says "i don't know what to do" really silly man get me a Kleenex and hold me. Lol.

Only thing I've found that helps with cramps is soaking in Epsom salt weekly. They have tons with scents now. My MO suggested i try it.

It's interesting - I had surgery to remove an infected TE last month and the PS told me to stop Tamo one week before and after surgery. (Actually, I called his office and asked about it, because organizationally speaking, he was a train wreck.) I now have a new PS and will have another surgery in a few weeks and this PS says to stay on Tamo. Sheesh... You'd think they would all get on the same page at the yearly conferences...

I met with the onco last week - I haven't had a period since 6 weeks after starting Tamo so she is going to test me for menopause when I go back. Yay. Said they might switch me to AI if that's the case - I assume those side effects are equal to Tamo, ¿yes? The one bright spot in our conversation was her assuring me that my nightly beer or glass of wine is just fine. I was going to have some compliance issues otherwise.

TaRenee - As for the foot pain, there are a lot of us women who are getting it, I wouldn't think it to be a coincidence that so many of us are suffering with it. I don't think they know or have listed all the side effects of this wonderful drug. Just my two cents.

Ready - I believe the AI's may be worse as they can cause bone thinning, osteoporosis, if you are doing ok on Tamoxifen you may want to stay on it.

Skiboots - Unfortunately you are ER+ so that means Tamoxifen or an AI (if past menopause) whether you have a mastectomy or not. Of course it is totally your call on the matter, but hormone receptor-positive breast cancers need estrogen and/or progesterone to grow. Tamoxifen attaches to the hormone receptor in the cancer cell, blocking estrogen from attaching to the receptor. Unfortunately it's not just the breast tissue that gets breast cancer, tamoxifen can help with Mets.

The medication suppresses your estrogen which is what feeds your breast cancer. Double mastectomy does not guarantee no more breast cancer . Any possible rogue or dormant cell is starved of its fuel to grow. try to stick it out. I didn't

Hi Tamox buddies,

I am going off Tamox and probably switching to Aromasin. How long does the Tamox stay in your system before you can start the new drug? I have been off nearly 2 weeks and meet tomorrow with Oncol to discuss the change of meds. I thoroughly researched Femara, Letrozole and Aromasin in making my decision.

Angelsgal57- when I was switched from Tamoxifen to Anastrozole it was stop one start the other the next night. (Now I'm back on Tamoxifen so who knows what's best!)

I thought the foot pain had to be medicine related. I’ve heard quite a few of us here are having issues. I sure don’t want to pay for podiatrist and xrays and all that if I don’t need it. What have any of you found that works? Anything? I did get compression socks (knee high) and I love them. I feel like that may help but I still have the pain. Ugh