Bottle o Tamoxifen
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Thanks everyone for their input. I guess I just have to wait and see.
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Hey Yearofthehat,
Just watched Dr. Norton, thanks for the link! I've only been taking, 1000mg of D3, so I'll up, couldn't hurt.
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fairy----I hadn't heard anywhere that Evista had any connection whatsoever to ovarian cancer. But I'm glad to hear that in addition to preventing osteoporosis, it helps lower your bad cholesterol. I'm taking it to help prevent invasive bc and I also have early osteopenia. (fortunately my ovaries are gone anyway).
anne
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YOTH, I am off for summer vactioon, but still have thelittle monsters to take care of. I start back to work Aug 17. I work at the school, so my hours are better than bankers hours. Atfer 18 years in retail it is a great. I have been very tired though, the only time I took off during tx was after each surgery, so I htink everything has just caught up with me!!!!!
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Thanks Lorraine/Ms Fairy,
OK I am going to ask about Evista vs. Tamoxifen when I see ONC in July. I am on Tamoxifen and I just wonder which is worse. LOL. ugh.
Spring.
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Springtime,
Yes, my onc told me that Evista worked just as well as tamoxifen, but without the se's to the uterus... I had uterine polyps growing in there and had to have a D & C last year, in August, and I gotta tell you it hurt like H*LL! SO I NEVER want to go through that again!
But, my onc also told me that Evista hasn't been approved for use by women who already had bc.
Jisman,
I don't understand what you are saying... the chance of getting bc is 1 in 8... so how can the chance of it being caused by the BRCA gene be also 1 in 8? anyway, I wasn't really too concerned about that BRCA test, only I don't see how NOT having the BRCA gene makes me at less risk for ovarian cancer??
Hope everyone is feeling great, and having a wonderful weekend!
Harley
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I just read your post Fairy, about Evista causing ovarian cancer... It seems that it's always something!!
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Jisman & Mary B - Thanks for your input on the hot flashes. Neurontin was discussed but my onc wanted me to try the Effexor 1st (can't remember the reason). Mary - I took the Effexor yesterday in the AM after breakfast and definitely didn't notice any of the SE's I had from taking it at before bedtime. I guess when your body is busy, the mind doesn't focus as much on the SE's as much. I had some flashes but not as intense and slept through much better, although I did take an Ambien last night. Plus, it was much cooler then the past 2 nights so not sure if that was why either. Thanks again.
Have a great Sunday!!!
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Harley -
The point on 1 in 8 is that the actual frequency of hereditary breast cancer is almost the same as the general population risk. Most people, myself included prior to being diagnosed, assumed that the hereditary risk was much, much higher. It's just not so.
As for BRCA gene mutation and ovarian cancer, if you are a carrier of the gene mutation, it not only significantly ups your risk for BC but also for OC (one of the mutations also ups the risk for prostrate cancer). Since there are not good early detection methods for OC, most people with the BRCA mutation are counseled to have their ovaries removed. I don't have the specifics in front of me yet that info should be provided as part of the counseling that usually goes along with the BRCA testing.
Joan
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Harley,
Well, if Evista is not approved for women who've already had BC, then I guess that is one thing I don't need to worry about!!! Thanks.
spring.
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You really have to watch where you get your information:
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Meanwhile, on Susan Love's site in reference to Evista:
http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=1&L3=4&L4=0&PID=&sid=130&cid=1282
excerpt:
FDA Approves Raloxifene for Breast Cancer Prevention
September 20, 2007In mid-September, the U.S. Food and Drug Administration approved raloxifene (brand name Evista) as a breast cancer prevention treatment for postmenopausal women at high risk of getting the disease. The only other drug currently approved for use as breast cancer prevention is tamoxifen, which can be used by both premenopausal and postmenopausal women.
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When the FDA approved tamoxifen for use as breast cancer prevention in high-risk women in 1998, many doctors thought that high-risk women would jump at the opportunity to take it. But they didn’t. Only a minority of the estimated 10 million women in the US who are considered high risk for breast cancer are taking tamoxifen.
If we were better at assessing who is high risk or if tamoxifen was actually able to eliminate a woman’s risk of getting breast cancer, we’d undoubtedly see more women using it for prevention. But that’s not the case. Most high-risk women will not get breast cancer. Furthermore, some of the women who take tamoxifen for prevention will still go on to get breast cancer. So, to put it bluntly, many women decided that they didn’t wants to die of a blood clot because they took a drug to prevent a disease they might not have gotten anyway.
So, where does this leave us? We now have two drugs available for breast cancer prevention. Raloxifene doesn’t decrease the incidence of DCIS or LCIS, which means that it does differ from tamoxifen—but we’re not yet sure how. This also means that although raloxifene has a slightly different side-effect profile, it is not better than tamoxifen.Whether the fact that there are now two drugs approved for breast cancer prevention will increase women’s interest in these medications remains to be seen. My guess is that women who are taking raloxifene to prevent and treat osteoporosis are probably happy to know that it is also reducing their risk of invasive breast cancer. But I don’t expect that the millions of women who chose to not take tamoxifen because of its side effects will suddenly be interested in raloxifene.
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Stupid question here... I have the Vitamin D drops... how do you take them? Do you put them on food and eat it or in a drink and drink it or put the dropper in your mouth- over tongue, under tongue? Does it taste like anything? My ONC said best to take at night. ?
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Happy Sunday!
I am feeling down today. Could be just being tired or it could be the fact that my period is suppose to start on the 2nd, or a combination of both.
My husband is great, but it just seems like he does not understand what I am going through. The rest of my family has so much going on that I can not burden them with my problems. My sister needs gall bladder surgery, her husband needs a shoulder replacement, my cousin is in the mist of a custody battle( his mom is my 2nd mom she helped raise me after my mom died), and my uncle is waiting to heal from his port removal to have a pacemaker put in( he almost died after anesthesia), So much with everyone. I am so grateful for this site, since I can vent here.
Hope eveyone has a good day.
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Hi Mary, isn't it funny how we have too look for an excuse as to why we are feeling down - its just this crappy disease!! It sneaks up on you every now and then. Tamoxifen did make me down but happy to say it has mostly worn off (I also split my tablet) near on 4 months down the track now.
You certainly do have a lot going on around you but that shouldn't make you feel any less worthy of comfort and understanding - you were only diagnosed in December for heavens sake. My husband is great too but they just get on with life, I guess they have to, no one really can understand us and that is why this place is just a god send. I know before I got sick if my sister or friends didn't call for a week or so I would just call them and catch up, now I get all put out and sad and put off calling them because I think that they should be the ones calling me. Life is all the same for them but for us everything has changed.
I can't make you feel any better but I can understand and I can feel your pain, I hope the rest of the day picks up and I hope it is your period!!!!! God can't believe I'm saying that! Damn hormones.
soft hugs
Helena
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Hello Hon! I'm getting ready to come off of Tamoxifen, I've done my two years, ready to go onto another drug, I don't know about you, but unless you are ACTIVE, I gained twenty pounds! Sorry! I have grandchildren to chase, so I don't know, It made me just as tired as having the cancer did, hope I didn't take any wind out of your sails
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Hello again everyone. I stopped by earlier this month to get mentally prepped for my train ride, and today I received my first bottle of Tamox in the mail. So tonight I board the train. As luck would have it, I am also on my period and the info I received said it was better to start while on your period. Better for what, I'm not quite sure. Right now I'm mentally trying to be prepared for se's.
Just to make sure I'm on the same page as everyone else, I'm taking one pill twice a day, 10mg. For some reason I thought it would only be one pill once a day, but no. I'm a little bummed since after chemo and rads, I made an effort to get off as many medications as I could before starting tamox, so that I would only have the one pill to worry about. Ah well, in the scheme of things, what can you do, right?
Also, chemopause was really bad for me and I had had that handled with a progesterone based drug, but then my onc recommended that I stop using it before I started tamox. So, now I'm really concerned about having the level of heat flashes I had before. Also, I wanted to ask about the night sweats. I find that I don't get the heat from these things, but I get the chills from the feeling a bit clammy if I wake up in the middle of the night. Anyone else have this?
Okay, I'm going to stop jumping the gun since I'm taking the first pill tonight. After that, it's wait and see...and run to the message boards for whatever happens!
Boarding one more on the train...
Catherine
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Hi Catherine, I think the jury is out as to where in your cycle you take your pill but I have heard to take it when your hormones are at their lowest and you are feeling good (probably wishful thinking) but I split my tablet in half, half in the morning and half at nite - all with my Onc's approval. I tried the 20mg all at once and dived out big time. Other than the squinchy eyes and a little anxiety I feel wonderful and no major side effects, except a little cold - I get chills too, but it is winter over here! No hot flashes, no joint pain, no weight gain or loss - and I have been tested as an Extensive Metaboliser.
And this is so naff but if you can just get your mind off the fact that you are taking a pill which has side fx I think you are on the right track. Try not to focus on it and wait around for the side effects, try and keep your mind off it As I have said many times, the first pill is the hardest.
Hope it all goes well - let us know.
soft hugs
Helena
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Gosh Helena Queen of the Desert you rock
Catherine- your instructions sound weird
I asked my ONC about drug interactions on Tamoxifen, specifically benadryl, tylenol, bottle of wine, stiff drinks... he said it was all fine, especially on an occasional basis.woohoo!
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I just read back a couple of pages - Dr. Norton has become quite the celebrity on our board. Wouldn't he like to know how warmly he was received? Thanks everyone for giving that link a try. I feel good to know that we're working with some of the same information.
I started Tamoxifen last Friday. I am very tired and am having hot flashes but it's only mildly worse than before starting. I am not sure if those effects are left over from chemo or not. At least the fatigue must be to some degree.
Helena - thanks for reminding me that others move on. I become frustrated wih some people's lack of sensitivity or misunderstanding of what I am dealing with. A very sweet woman suggested to me today that I am sleeping too much and that's why I have no energy. Nope. I know what that feels like and this isn't the same, at all.
WHOA - as I write I have to strip down. This pillow I am lying on suddenly feels like it's been sitting in the sun all afternoon... whew.....beads of sweat on my fuzzy little coif.
Someone turn up the air conditioning on this train. yikes. Open a window!
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I see some of you mentioning that during a certain phase in your menstrual cycle you start taking tamoxifen. I'm just wondering why, what difference does it make?
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Hi RoseG, I started Tamoxifen in February of this year just about the time my period was due thinking it would stop my periods (NOT). I coped OK for a few weeks but by the 3rd month I had to stop. I had horrendous anxiety and ended up what I would have called depression, like I mentioned none of the other usual "physical" side effects. I have never suffered from that kind of sadness before - even through my diagnosis and subsequent bilateral mastectomy and reconstruction.
I stopped taking the pills and immediately went and saw my oncologist who gave me a script for Effexor and urged me to try again after a month's break and on my request splitting my pill in half. I actually saw a post here from a lady who did that and I PM'd her to see how she was going. I only did 2 weeks of a break as I was too freaked out taking nothing but this time started mid cycle when I was feeling up and no pre-menstrual angsts.
It may be just a fluke but one month down the track I feel great, well good, let's not get to carried away!!!! Never filled the Effexor script. Not sure if it had anything to do with the time I started taking it or the split dosage but I'm sure damned glad something worked. It could also be mind over matter - who knows.
Some ladies here may have more scientific statistics (they're a clever bunch) but it seems to have done the trick for me.
Are you on tamoxifen and having problems? I hope it is all going OK for you.
soft hugs
Helena
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rguiff- I made a point to track down who took their tamoxifen when, and i was shocked that there's been no studies made. That's part of how I found this thread, and Helena (Queen of the Desert)'s experience. I had a theory that if I took Tamox when my body was already ebbing the estrogen, on that part of the cycle, that my body would not notice so much... I found a bunch of women here who had the same idea. My OB GYN said that would be when my period begins, same thing the other women tried, taking it on their period or just as it began. They all had problems, like Helena, and they all pretty much tried taking a tamoxi-break for 2-5 weeks and when they restarted, they were fine. (I am NOT talking about hot flashes or vaginal discharge, those are to be expected and sort of celebrated on Tamoxifen... but that's another story).
Does that mean that they plopped down in another part of their cycle and that is what made the break work?
I also pestered the women who said they had no problems on Tamoxifen, and asked them what part of their cycle they began and none of them could remember
. So I asked my therapist, who is actually both a fertility counselor, head of the American Fertility Association, (I met her when I was doing IVF) and has a background in cancer as well. We reasoned that the women who couldn't remember what part of their cycle they started on were probably not having their period- because we women tend to remember that. Now none of this is proper scientific evidence, just "anecdotal", me pestering everyone i could find on this board to ask them, and of course the ones who couldn't remember we're just making a semi-educated guess about.
Which makes the instructions Catherine was given pretty unusual. I hope she can tell us more about that.
But... I am often citing real studies on the SEs of Tamoxifen, there's a Susan Love study of 140 postmenopausal women and there's a great big study of 13,000 premenopausal women, long story short: yes, the women reported all kinds of SEs BUT so did the control groups who were not taking Tamoxifen! Nearly equal! The only SEs that were definitely more than without Tamoxifen were hot flashes and vaginal discharge. And the good news there is that those women who had the increased hot flashes and vaginal discharge also had an even lower recurrence rate.
I can repost or PM you the links to those studies. Very heartening
And everyone, don't forget that Vitamin D3!!!!!!!!!
HTH
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Hi Ladies,
I just got on the Tamoxifen Train 6/21 after staring at the bottle for a few days. Is anyone also getting Lupron shots? I am 36 and premenopausal.
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Okay, this is a direct quote from the information that was sent to me from Medco, the company that sends prescriptions through the mail and includes all the info and contraindications, etc:
"How should I take Tamoxifen? If you are taking tamoxifen to reduce your risk of breast cancer, you may need to take your first dose while you are having a menstrual period."
Interpret that as you will. Personally, I would have started taking it tonight regardless. It just so happens that I started another one of my periods that is more of an extended period of spotting.
So, I'll just follow Helena's advice and do the wait and see. After chemo and rads and comparing what other women's reactions to se's have been, I've come to learn that we all react differently, and that most of our se's have little to do with when we take medications but rather how our bodies choose to react...and we can't predict that so much. And let's face it, no matter how much we research something that says you will react a certain way, it doesn't mean you will!
But thanks Helena for mentioning the splitting of your dose. It makes me feel a little better knowing that that is how I'm doing it. I guess having two smaller doses during the day could be easier than one big dose (I just hate having to take pills, so I would have rather taken just the one, but not if it means suckier se's)
Can we make this train like the train that goes to Hogwarts? Only with more adult amenities?
Catherine
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Forgot to say thanks for the welcome to the train!
Catherine
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Guffaw.... Hogwarts!!!!!
Well that's pretty strange from Medco. I'd say poop on them. They only say "may" anyway. Ask your ONC if you feel unsure, but mine doesn't give a flying f*ck to a rolling donut what day of my cycle I start.
In any case, wishing you the best ride in the most comfortable accommodations on this train...
Thank you for the update
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Rachel--I don't think my onc cares what day I start taking the tamox...just as long as I start. You know what I'm saying?
And like I said before, interpret what Medco says however you want. You mentioned wanting to hear more of where I referenced the timing of starting the tamox...so...lol...there it was!
But you know, since my last post, I got a bit of heartburn. Nothing major that tums couldn't handle, but hmmm...making a mental note.
Catherine
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