Bottle 'o Tamoxifen

I, for one, am a very lucky person. All my life, things have just always worked out for the best for me, through no effort of my own. When BC was diagnosed, I was blownaway, hence my ID name. I've been titrating down on my daytime pain meds and will start weaning off my nighttime pain meds next week. In doing so, my pain has already doubled. Before starting Gabapentin, I was at my limit dealing with the pain that was not completely controlled with just Gabapentin so I started taking duloxetine. Combined, both did not completely alleviate the pain but it was doable. At this point, I'm taking a break from Tamo (last pill was yesterday) in an effort to determine if the pain is a Tamo s/e or CIPN which has already been diagnosed. I am 95% ER+ so once my little experiment is over, I'll be back on hormone therapy. I just need to know if this horrible all over pain is from Tamo or is chemo induced, which would mean the rest of my life instead of another 2-1/2 years.

Molliefish I am sorry if I sounded harsh. My passionate response was not aimed at Michelle personally, but rather at the notion she presented, in a round about, back handed way, by sharing that story of the woman and her regrets. The IDEA, that people who don't 'follow the rules' and get cancer again deserve their cancer ... that suggestion directly, indirectly, as hearsay or in casual conversation offends me to my very core.

It is wonderful that we have the tamoxifen option. No argument there. But we should never, for one second, fool ourselves into thinking that it's a guarantee, and that if you DON'T take it, you deserve the cancer you get. I wouldn't wish this on anyone! None of us would. I say again that I find an utter lack of humanity and support in that finger pointing, after-the-fact blaming. I would say so no matter where I heard it.

I had dcis in right breast in 2011. Stage 0, low grade but er and pr positive with allred score of 8. I could only tolerate the tamoxifen pain a year. I gained 50lbs and it wrecked my sleep and thyroid. Now take levothyroxine. I' also type 2 diabetic now. I developed uterine polyps, heavy bleeding and genital skin rage from the tamoxifen. The gyno said tamoxifen is the gift that keeps on giving.

I' almost 7yr out from diagnosis and every year spend months worrying it will come back because of not taking meds. Anyone in similar position??

Yes, I too have experience more frequent and UTI and overall irritated genital area....my OBGYN says to use NOTHING on the area...only water to wash the area. No soaps, no creams as these can and often irritate. For lubricant, she suggests organic almond oil. For me, these solutions have worked for me.

Good luck!

Hi everyone...lets all try to remember that treatment options are a very personal choice. I'm happy for anyone who does well on Tamoxifen. However perspectives from those who have bad side effects vs those who do not are obviously completely different. We all need to respect and support all treatment decisions made without judgement.

Tryler, I'm in southern IL and receive my treatment in MO through Siteman. Are you up north (aka Chicago, the only part of IL anyone knows about or considers IL 🙃) or in my neck of the woods?

SJI, you are welcome.

Victim blaming is ubiquitous. I think often we do it without even realizing because it is mixed into us the minute we pop out in this culture.

Now, some decisions we make DO carry negative consequences, like drinking and driving. Can the person who drinks and drives REALLY complain when they get in an accident? No. That person made a choice when they KNEW the negative outcomes.

But tamoxifen is not so clear cut. The outcomes are not known. Take it an do well. Take it and feel like hell. Take it and get no recurrence. Take it and get a recurrence. Take it and get no breast cancer but uterine cancer instead. Or a blood clot. Or a beard like a circus lady. Tamoxifen is hopefully a good thing, overall, but it is offered with a shrug and grimace and fingers crossed. Because, no guarantees.

It think it is important for women who had no problems to post that here. We NEED to hear a balanced view of outcomes because I believe it does offer hope. Women can give tamox a try hoping for the best but knowing that others have had hellish times and if it turns out to be hellish for them, there should be no guilt or failure attached to ditching it. And no stories of gee, if only you had toughed it out you wouldn't have cancer now or wouldn't be second guessing yourself later, beating yourself with guilt and questions. We all do the best we can with this stanky disease and we all have to draw our own line in the sand of what we are willing to tolerate. How far we are willing to go.

SJI, you ARE welcome on this site and indeed your voice is one that needs to be added to the mix. If you do not feel welcome SCREAM about it, because other sisters, feeling the same, can step out of the shadows and begin to claim their place on these pages. Because if there isn't a place for ALL of us, this is no place for any of us. Sharing must be open, honest, personal and NOT laced with threat and judgement.

runor.....rage was autoorrect typo...but rembering now I had a horrible itchiness on tamoxifen. It should have said skin tags....lol

Ladies, I am one of the blessed ones who has been taking tamoxifen for several years without any major problems. The hot flashes at the beginning seem to have gone away and having had 2 hip replacements my joint pain is much better. The hip replacements had nothing to do with tamoxifen, they were damaged before breast cancer. I started treatment in July of 2014 and so far no reoccurance, thank God. BTW I am 74 yrs old. Love, Jean

hello,

First time posting here.

I quit tamoxifen couple of times because of unbearable bone pain, night sweats, leg cramping, insomnia.... I have been back on it for about a year now but at a lower dose.

I'm at 10mg and definitely tolerating it better. But I'm also taking venlaflaxine/effexo - (anti depressant) which supposedly helps with some menopausal symptoms. My onc has been pushing to increase the dose back to 20mg and asked me to talk to my dr about increasing the dose of venlaflaxine to counter some of the side effects...

I'm very reluctant about this because of my medical history - I'm seeing her again in a few weeks so we'll see.

Hi Ladies! I just wanted to share this because I found it amusing and we can all use a smile sometimes. So I have a 20 month old daughter who is learning all these new phrases seemingly daily. Well, after Momma stopped playing dress up with her and the winter hats yesterday, her newest is "Momma's hot flashing!" Because that's what I gave her for an explanation. I can only imagine the amount of times that is going to get repeated, possibly to perfect strangers!

Mine came in a few weeks, not the same day. And then in another few weeks some of them eased off.

I got the muscle/joint pain within about 2-3 months. The nausea and dizziness didn't start for almost a year and then took another year to figure out how to get rid of it!

I had bone pain the entire time I was having the Herceptin infusions. I'm one month past my last infusion. I am also on Tamoxifen. I had zero bone pain pain before this. Mine is not in my joints , just the bones.

Blownaway~ I am right there with you. Hard to determine whether it's the CIPN or Tamoxifen. I think it's both. Let me know what you figure out, ok?

Runor et al~ Let's support each other, and also remember that taking Tamoxifen does not mean we will not have reoccurrence. No magic pill, no illusions. I would never place all my faith in the pharma industry.