Bottle o Tamoxifen
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Yes, Lula, that's exactly why MOs make the switch. Oncotype recurrence risk, and the usefulness of chemo, is based on studies done with Tamox plus chemo. Whatever the stated reduction you would get, based on those studies, improves significantly with an AI.
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Georgia1 - I did have genetic testing after diagnosis because of my age. Would the information be in there or is it a specific test that must be requested? I’ll go dig through my paperwork
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Lula- perhaps I can shed a little light on the OS + AI decision. I was told by the docs at Dana Farber that there is still a risk of “breakthrough estrogen” with OS, and that AIs are not able to handle that. I’m not sure if that’s an actual risk or hypothetical, especially if you get the 3 month depot shot. Now my numbers have been bottomed out since I started OS, but I’ve seen posts by others who haven’t. I suspect age is a big factor in these decisions, since I was nowhere near menopause. Also, bone health played a part in the decision as well.
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Lula- perhaps I can shed a little light on the OS + AI decision. I was told by the docs at Dana Farber that there is still a risk of “breakthrough estrogen” with OS, and that AIs are not able to handle that. I’m not sure if that’s an actual risk or hypothetical, especially if you get the 3 month depot shot. Now my numbers have been bottomed out since I started OS, but I’ve seen posts by others who haven’t. I suspect age is a big factor in these decisions, since I was nowhere near menopause. Also, bone health played a part in the decision as well.
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good point cpeachymom!
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TRVLER - How did I arrive at my dosage decision of 10mg a day plus 20mg on Wednesday and Sunday? Not very scientifically I'm afraid.
The few studies I could find on low dose tamox seemed to say that at 1 mg and 5 mg a day, the levels of tamoxifen stayed high enough in the body to be effective. Some of these studies started everyone off with a 20mg tablet, to get the drug into the system, and then just kept it bumped up with 1mg and 5 mg and these dosages seemed to be effective at keeping tamoxifen levels high and present in the body.
But none of these studies are considered conclusive.
SO here I am with a 20mg tab that has a little line pressed right down the middle which says to me they are very able to be split and the idea that splitting a pill is dangerous just makes absolutely NO SENSE to me at all. Dangerous based on what evidence? Hitting a bullet with a sledgehammer is dangerous. Splitting a pill is not. I get my big kitchen knife out, set myself up on the cutting board and gently slice pills. I pop the cut ones in a bottle and once a week fill the pill dispenser thingy. They do not all split 100% down the middle. But I figure at 10mg a day I am taking double the dose used in the tests - if I get a mg less one day and a mg more the next, it all works out in the wash. Point being that I believe 10mg a day keeps the tamoxifen in my system at a high enough level to be effective. If side effects are any indication (some say they are, some say they aren't) then it's working just fine.
The decision to take a whole tablet twice a week was just to err on the side of caution. I think my Hub was feeling that I was playing fast a loose with my life and taking a full dose twice weekly was a concession to ease his worry. I truly feel that I could cut that out to ONE full tablet ONCE a week and still be fine. But I am considered 100% for both ER AND PR and it seems for me tamoxifen is highly effective. This non-scientific approach might not be advised for someone with a different ER/PR score.
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VL22, yes I think your genetic test results would have told you if you have the CYP2DX gene. The study that linked it to Tamoxifen metabolizing is fairly recent so here's hoping it's in your report and your MO can explain whether Tamoxifen will benefit you. It seems nuts to roll the dice and take it without knowing if your body can even matabolize it.
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hello
I am writing this letter in hopes of getting professional and personal opinions about tamoxifen, I was diagnosed with stage one breast cancer at the age of 39. my dad passed away from intestinal cancer at the age of 54 and my mother was diagnosed with kidney cancer at the age of 60 something (she lies about her age all the time so it's hard for me to keep track)
. anyway, once I received my diagnosis, I was convinced that I had the dreaded cancer gene. so I opted for a double mastectomy followed by an aggressive chemo therapy plan. after completing the chemotherapy I then started tamoxifen, at first it was not bad at all and I noticed very little side effects and was ready to power through with it. But after about 4 months on it, the night sweats and hot flashes were so severe I needed to start taking another drug to help me sleep, I also became extremely fatigued and my mood swings were; well lets just say I am surprised I still have a job and a husband!!!! After a very embarrassing melt down to one of my neighbors who was just sitting on her step minding her own business I decided to stop taking the tamoxifen and now after being off of it for about 6weeks or so I feel like my self again, I do not need another drug to help me sleep. I still have the night sweats and hot flashes but they are bearable and do not effect my quality of sleepI am er and pr positive and her2 negative and my genetic testing determined that the breast cancer was actually environmental and not genetic.
so my question is; if I opted for the most aggressive surgery and then completed a pretty aggressive stint of chemotherapy treatment, what is the true benefit of taking the tamoxifen? will it help prevent reoccurrence of other cancers or just the reoccurrence of breast cancer? what are the long term side effects of taking this drug? and does it outweigh the potential possibility that it will help prevent reoccurrence?
thank you for taking the time to read this letter
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kstiles
Did you take the oncotype dx test? That provides specific answers about your individual recurrence risk and the extent to which tamoxifen plus chemo would reduce your risk. I think your doctor can send the sample even after your treatment, if your pathology center saves the sample taken from your tumor.
In general, the results tell you how much benefit you get from chemo Plus Tamox. Also, in general, the higher your oncotype score, the more chemo will provide a greater percentage of the benefit, relative to Tamoxifen, when used together.
However, the greater your ER positivity, the greater you benefit from Tamoxifen.
So, you should ask your MO for specific info about the oncotype test and your percentage of ER positivity.
Personally, I had a high oncotype, 95% ER and a grade 3 aggressive tumor. So, I needed the strongest chemo and Tamoxifen just to feel comfortable. The only good news is that I was more negative and also 90% PR positive. So that PR likely kept the czncer from spreading before I found the tumor.
Again, talk to your MO...
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when I suggested my cancer did not spread, I am saying that I was more negative, which also matters prognostically.
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kstiles - I was like you and not liking Tamoxifen at all, the SEs were getting worse at time went on. The ladies on here have suggested different brands of Tamoxifen give different SEs. I am 7 weeks on the brand name version of Tamoxifen and so far the SEs have been manageable. I am wondering if you have tried a different brand?
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Does anyone else have cold flashes? I froze all night! I sleep in a night garment for LE and my right arm and chest were the only part of me not freezing! I should have just got up and put on socks!
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Vargadoll, I use to get those, haven't noticed them in awhile now. Once I caught a cold and the heat wave hit I was hot all the time, now I am comfortable.
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I have always been on the "cold" side but worse on Tamoxifen. I can stay warm if I dress the right way but last night I slept in short pj bottoms not capri. I should have just put dang socks on! It makes a huge difference.
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Vargadoll, Yes!!!! I don't even wear sandals in the summer because my toes are cold. Agree that wearing socks to bed makes a big difference. Glad to know that I am not the only one. Thought things might be different on Tamoxifen but still wear socks to bed and a sweater or light jacket in air conditioning.
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Beaverntx- I'm 53 and never thought I would always be so cold! The first time I went on Tamoxifen there were a few times I got a little warm. Mainly around my chest and it would go away as quick as it came. DH called them spells...lol this go round with Tamoxifen (one month so far) I'm still freezing!
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ugh I wish I got cold at night. Darn still hot all night.
My headaches are getting better though. Still get a dry mouth from tamoxifen.
I had my exchange surgery yesterday! In some pain but not too bad right now
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Shelabela - not sure what exchange surgery is, but hope you are feeling well today.
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Shelabela- I use to get dry mouth to! I had forgotten that! Long story but I took Tamoxifen for a year and was put on Anastrozole for 3 months then back in Tamoxifen. The first year I would wake up my mouth was so dry. I use biotėnė and it helped. I've been back on Tamoxifen a month and so far I've not had dry mouth. I can't believe I forgot about that. Rest well and hope the pain is manageable.
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Shelabela- I use to get dry mouth to! I had forgotten that! Long story but I took Tamoxifen for a year and was put on Anastrozole for 3 months then back in Tamoxifen. The first year I would wake up my mouth was so dry. I use biotėnė and it helped. I've been back on Tamoxifen a month and so far I've not had dry mouth. I can't believe I forgot about that. Rest well and hope the pain is manageable.
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I am almost 6 mos in and although my side effects have been minimal I am beginning to wonder if ill ever sleep again! taking melatonin , taking tamoxifen when I wake up...
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gigibee- Boy do I hear you! I was able to stop the melatonin for a bit, but now I’m back to taking it every night, and Still not sleeping! I’m trying to figure out if the bags under my eyes are from lack of estrogen or lack of sleep. I feel like I “look” like a cancer patient because I have large dark circles under my eyes.
Oh well,At least I can complain about it.
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yeah Cpeachymom I think I will age 50 years in the 5 I have to be on this. I sent my nurse a message to see if she has any advice. I am on the tamoxifen brand by Teva, if any one notices better results on another manufactured please share.
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shelabela- congrats on the exchange, hope you’re healing well!
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Haven’t been on in a while and sorry to go pages back to the PR discussion, but I am only PR positive (and slightly at that) and still I am forced on hormonal meds. My onc gives me some half assed explanation that seems very much like “we just don’t know and so to avoid getting sued, I’m putting you on this to cover my ass”.
I have yet to find a large or in depth study of PR+ only and it seems some in the research community consider it an anomaly. I will continue to take it however grudgingly. I’m not leaning towards switching to an AI down the road because there’s a big history of osteoporosis on both sides of my family, apparently I have a bone weakening genetic mutation ( found due to all the blood work that comes with cancer treatment), and a strong history of cholesterol issues on my dad’s side. I’ll do my 5 and then we’ll see.
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I am really struggling lately, too. I can deal with the hot flashes but the lack of sleep is killing me. I was taking .5 mg of xanax throughout treatment and now I am down to .25mg. I was completely off it for a while but not sleeping. I can sleep on .5 mg but the GP told me it can cause dementia. Doctors want to put you on low dose antidepressants (effexor) and I know if I do that, it's the final nail in my sex life's coffin. Plus, historically I haven't responded well to antidepressants. I don't really want to go there.
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Trvler - have you tried Melatonin or maybe if available in your state THC oil for helping you sleep? Unfortunately melatonin will get you to sleep, but not always keep you there, so I just take another if needed. Apparently it's good for inflammation in the body too. THC oil helps me sleep all night, the side effect of that is hunger. I only take it when I absolutely need something to calm me down, like the day my step dad died I took some as I was a crying, hyperventilating mess.
CDV - I am shocked you have to take Tamox with not being ER positive, have you thought about a second opinion on taking it? Personally the SEs are not worth it for me if it doesn't help the type of cancer I had. Not to mention the cost of it if you don't have coverage.
The brand I am on that has a few SEs, but currently manageable is Nolvadex. Although my fatigued seems to be increasing again, nausea (could be the diet I am on), TMI warning!!! vaginal leaking although harmless, is a pain and stinky, pain in feet if I miss talking magnesium, stretching my feet - WOW! the first two are the worst and hopefully the doctor will have some answers for me tomorrow.
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trvler, I am on Effexor and so far my sex life has not changed a whole lot.
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Shelabela: So can you still O?
I have tried melatonin.
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I have not read thru this whole thread, but I am wondering if anyone out there had BC and uterine CA and is now using Tamoxifen. I am not tolerating AI s, and my gyno oncologist thinks it should be ok, but id like to hear other people's experiences
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