Bottle 'o Tamoxifen

dawn, you may want to pursue a course of acupuncture. I'm taking a class offered by our breast cancer coalition and their research is showing good results with acvupuncture.. most places will do a sliding scale for payment.

Lula74, Thanks for your response. A pea soup fog is just what I feel like I'm trying to wade through. My stock in trade was words/verbiage. Now I feel at a loss for words at times. I started on Letrozole but the bone/muscle pain was horrid and I have osteopenia. Next they put me on Tamoxifen. My pain level is much better, but the concentration, word issues are horrible. I'll check out the Irwins to see if I can tell if I can take it with my other meds. There are so many things I can't take with my Thyroid replacement hormones. Loss of concentration/memory is soooo... frustrating. Thanks again for your help!

Barbara

**Update on Intrarosa Use **

I’ve used the Intrarosa off and on for the last 4 weeks give or take. Off and on because a whole suppository makes me have horrible IBS cramping about 12-16 hours later and I end up in the bathroom for hours. And it takes a few days to recover (yes it’s that bad for me). Since it’s working in that tight area of tissue that includes urethra and rectum/intestines it makes sense (i had this issue when i would get my period too). So I cut them in 1/2 and used 1/2 of one religiously for about 10 nights, then none for the last 7 (life has been very busy and crazy and once I hit the bed that’s it I’m not getting back up) First trial for sex with DH at day 8 of taking 1/2 was ok. More comfortable than before but still not pain free especially on the top wall of the vagina. Still used LOTS of coconut oil. Everyday discomfort was completely resolved though. Fast forward to this morning and DH and I got frisky and everything worked as it should! No pain, only pleasure, achieved the big O relatively easy, and no lube required either. He’s happy, I’m happy, things are good again! I will restart 1/2 a dose as soon as i start to feel any discomfort moving forward. I can easily see doing a 7-10 day stint every month or every other month to keep things healthy and comfortable.

I'm supposed to start Tamoxifen in two weeks. I tried birth control a few times when I was young and always become too emotional on it and quit. I've always been sensitive to drugs and have often taken half doses. Steroids during chemo made me into a crazy speed freak. Has anyone taken half doses of Tamoxifen? Maybe too risky?

Rachelcarter, I take half a dose 5 days a week and a full tablet 2 days a week. Sunday and Wednesday I take a full tablet. Other days I take half. But this is a decision that has to be arrived at after some thoughtful consideration.

1) how old are you? We know that younger women seem to statistically have worse outcomes with cancer, so your age and thus your increased (or not) risk should factor in to your decision making. If you are 97 you might be more inclined to live on the edge, take a risk and go for half a dose. .

2) how are you going to FEEL taking half a dose? I do not mean physically, but mentally. Are you going to FEEL that you are at risk? Because that is NOT a good feeling and if taking half a dose makes you worried all the time that you aren't doing everything you can to fight this disease, then you are not a good candidate for half a dose. It will give you too much mental torment, at a time when you already have more than your fair share of mental torment.

My own thoughts were that there is no evidence, anywhere, that say we MUST HAVE 20mgs a day or we won't get the full effect. That research DOES NOT EXIST. If your onc is honest he will tell you that 20mg a day is the industry standard, but HOW that was arrived at has nothing to do with effectiveness, but was found to be the dose that most women could 'tolerate' without throwing the drug in the toilet and saying, to hell with this. And 'tolerate' should not be misread to mean that women had no problems on this drug. Oh, women have problems alright and put up with a lot to stay alive. But at 40mgs a day many women felt so miserable they refused to take the drug. So, is 20mg a day NEEDED to be effective? No one knows.

There is a teeny, tiny bit of experimental research that says lower doses might be just as effective. But they are too small to be considered conclusive. To me though, they were compelling enough that they factored in to my personal decision making. My oncologist, at out last meeting, also said there is evidence showing that intermittent use is also effective. As in, be on for a few months and off for a few months and the overall survival rates look the same. Again, what this points to is unclear, but it brings up some interesting possibilities.

I didn't want to feel miserable because I know that when I'm done, when I've had it with something, I am done. Finished. Over. And I didn't want to have that happen with the drug that offers me some positive outcome. To that end I decided on half a dose, part time. If I get a recurrence, many people will say it's because I didn't take the full dose. But those people will be talking bullshit because they have NO PROOF WHATSOEVER that the full dose would have made any difference. WE DO NOT KNOW. No one has done that research.

Despite taking half a dose I think, for me, the effects have been quite profound. Not intolerable. But pretty big. My hair is falling out. It clogs the drains, covers all the furniture and is in everything I cook. Hot flashes, night and day, are miserable and sticky. Some women can't sleep, I don't have that problem, until unrelenting leg cramps wake me up over and over. Seems they clear up for a while then suddenly I'll have them every night for weeks. And they are DOOZIES! My joints have seized up. I'm fine in the day moving around. But in bed, when I'm still, rolling over and moving hurts. By morning, my shoulders and elbows are stiff and pain is the first thing I have every day. Oh, and it stopped my periods dead in their tracks 100% ( happy dance, clapping hands, goodbye evil periods from hell, I do not miss you!). So far my vagina has not shrivelled up and fallen out, although there have been a few sexual encounters where I was NOT focused on anything other than "What the hell is wrong with my kooch?" as it feels like someone is smashing a hockey stick around inside a toilet. Awkward and really pointless. I have had an increase in bladder infections. Because my lady parts are just not up to snuff anymore. Age does this. I think tamoxifen does it faster.

This is long, but hope it gives you some things to think about to help you come to a decision that works for you and you can live with. Good luck to you!

2fun, I would love to try the acupuncture but really need to know if all are equal or how to find someone reputable in my area that has hours late enough for me to go after work. I have used all my PTO time and am just about out of FMLA time, right now I am out of work for my implant exchange, I was told no drains this time and I ended up with 3, the radiation had evidently caused encapsulation and a lot of scar tissue. I still need knee surgery and will have to return to work a day or two after. I had it all planned to have it a few days after the breast surgery and recover from both at once... when the orthopedic surgeon saw the drains he cancelled my surgery... so now I have to wait.

Hello everyone. Wow, ten years out and I'm finally finding you! I had chemo and radiation 10 years ago. Took tamoxifan for ten years. I handled it okay, just had to get used to living with joint pain, exhaustion, brain fog. Stopped tamoxifan 3 weeks ago. Oncologist would not allow me to stay on it. No studies exist to prove it beneficial after ten years. I was also on Effexor (anti-depressant) for ten years 125mg, reduced to 75mg (2 weeks ago) and stopped completely 3 days ago. I am a wreck. The effexor withdrawal has symptoms similar to heroin withdrawal. Horrible headaches, tremors, brain zaps, nauseua, sweating, crying at the drop of a hat, vertigo. Hallucinations (minimal - bugs, all over me but only happened once), inability to discern reality, and I could go on and on. I have no idea if any of this is linked to stopping the tamoxifan. I don't think so although it could be contributing to the headaches and sweats. Taking wellbutrin to try getting some relief. Hasn't helped yet. Concerning tamoxifan (topic of this thread) I was not expected to live past 3 years so I stayed on the tamoxifan no matter what. I'm glad I did. The Effexor? Wish I was given an alternative med.

Crying as I write because I feel so alone in that people generally don't understand what they have not experienced - right? I get that. But this is so @*^# hard.

Anyway, have read many of the posts on this thread and you all seem like such wonderful, caring people. Hoot! Hoot! for you!

Anyone been in my shoes?

Question for those peri-menopausal:

Are you still getting a period on Tamoxifen? If so is your cycle messed up? For example I am a week early this month, at least I am assuming/hoping that is why I see blood on the TP.

Thanks ladies.

Vampeyes- I started Tamoxifen March 2017...no period for 14 months. Oncologist switched me to Anastrozole in March 2018. Periods were like clock work (I'm 53) until lumpectomy in Feb 2017. I skipped one that month should have started the day of surgery (glad I didn't that would have been to much for me to handle!) Since I hadnt had a cycle in 14 months the oncologist said I'm post menopausal. Took Anastrozole from March 2018 until first of June 2018. I started spotting May 31. Spotted for 15 days. I am perimenopausal and now that I'm back on Tamoxifen and here it is October and nothing since the spotting for 15 days in June. Of course I'm told Tamoxifen has nothing to do with me not "having a cycle"....smh!

vargadoll, that's interesting that your period came back after that long. I'm wondering if mine will do the same after I witch to Aromasin. My blood work says menopause but who knows. Were you tested formenopause before your change to an AI?

Legomaster- YES!!! I had blood work March 20th and was told I was post menopausal. ..bam just like that! No easing into the idea of the next phase of my life!!! I stopped Tamoxifin and started Anastrozole March 21st. Spotting started May 31st (and it wasn't pretty! A really disgusting brownish color...tmi) called oncologist was scheduled for blood work the next morning. 5 days later I get a call that I'm perimenopausal stop Anastrozole and go back on Tamoxifen. I have yet to receive a reasonable answer about how I went from post back to peri... I "assumed" it was the Tamoxifin. I just know that 15 days of spotting put me and my va-jaja in the spot light at my gyn. Atleast I have a good baseline on the condition of all my lady parts..

Vampeyes, none for me so far since the last one right before my diagnosis at age 56 (almost one year ago!). I was soooo close to menopause before last year. My working theory is that getting rid of the tumor stopped the hormone factory which was fueling my cycles. Tamoxifen is my insurance plan.

Veeder14- Thank you for sharing! I always get more info from the ladies at BCO then anywhere else!

Legomaster - took Tamoxifen in Tuesday night got the phone call to start Anastrozole the next night. Just switched to straight to it. I had no side effects whatsoever at the anastrozole (except weight loss. .bonus!) the tamoxifen I have to pee more and have a little brain fog but that's it.

Well not a period as it only lasted yesterday.

Hahaha Sara, those poor kids! That sounds awful about the periods, but I think I have read that with you shedding like that you won't have the build up of the lining. That's a good thing! How is the pain? Can't help you with the flu shot, I don't get them. Did once when the kids were little and haven't since.