Bottle o Tamoxifen
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Yahoo, yaHoo, YAHOO - sorry for the confusion and glad it gave some of you a laugh hahaha
I am from cow town Calgary and we do say Yahoo - but then I do have a Yahoo account.....
You are all great sports, with great abilities to laugh. And that is GREAT for all of us.
Well done, newbies. It is not all bad that's for sure - and it is saving our lives. YAHOO (did I get it right???)
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Hi To All !!!
Should we start our own thread LINGO:
So far we have:
BIG T for Tamoxifen
TAMOXITRAIN for all us riding this bc train
TAMOXITEERS (used for 3 but then it could be more like Mouseketeers)
Susie: Thanks for the beautiful flowers and I'm not allergic. Roses are my favorite and they smell gorgeous. I AM much better. Couple more days and I might be my onery old self.
I guess fish oil Omega 3 IS good for about all that ails you from what I read. LOL The main thing is I couldn't find one negative thing other than not to take it before surgery...similar to aspirin.
Bonnie
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CatbirdC wrote: I guess fish oil Omega 3 IS good for about all that ails you from what I read. LOL The main thing is I couldn't find one negative thing other than not to take it before surgery
Bonnie - That's EXACTLY how I determine the supplements I take ! I'm all for helping myself wherever possible but I'm not knowledgeable enough to mess with the supplements/vitamins that have risks if overdone or if even 1 study says it can have a negative effect. Oh, one amusing aside about fish oil....remember hearing in the "Olden Days" about the benefits and bad taste of Cod Liver Oil....well, our "Fish Oil is simply a modernized version ! Guess they knew a thing or two back them.
In addition to Fish Oil, I also take 1000 mg of D3 - which WE ALL SHOULD TAKE again no down side and important not only for BC but for us women generally. Both my gyno and Med Onc recommended it. Now, I drink a lot of milk, eat yogurt and chees so always thought a D supplement would be superfluous and my tests levels did come back "good" even without the supplement (39) but they'd like it even better (over 50) But read the bottle and do not buy one with extra Vitamin A added.
I also take CoQ10 - a bit more new fangled, said to do wonderful things and no downside. The worst study I read says it has no more than a placebo effect...then again, I've also read that many of our SE are simply in our heads (aargh !!!) so maybe that's exactly what we need . Here's a couple of basic articles on CoQ10; I have more incluing academic ones if anyone's interested. http://www.cancer.gov/cancertopics/pdq/cam/coenzymeQ10/Patient/page2 , http://www.drweil.com/drw/u/id/QAA400021
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Good Morning People! How is everyone today?
Caroline: We all got such a laugh from the YAHOO! And, everyone needs a good belly gut laughing every now and then, so, thanks again for that!
Bonnie: We are developing a new Lingo here! I may have to start writing all of this down in order to keep up with it. Ok, kidding. ( sort of lol ) I am so happy that you are feeling better. Just rest, drink lots of liquids and take your meds. Glad you liked the flowers!
MTG: I love reading all that you post. It is always so interesting. I really appreciate your posting the sites for us to read more about it at. Post all of those that you want as I read them.
Love the tamoxiteers! I was apprehensive about taking tamox, but, I am happy that I did finally take it. We need to do all that we can to fight this horrid disease!
Now, enjoy your day to the fullest! Tamoxichicks! I like that too! lol
Susie
Now this is a really Bad Day LOL I hope you get a chuckle from it...I did
There was this guy at a bar, just looking at his drink. He stays like that for half of an hour.
Then, this big trouble-making truck driver steps next to him, takes the drink from the guy, and just drinks it all down. The poor man starts crying. The truck driver says, "Come on man, I was just joking. Here, I'll buy you another drink. I just can't stand to see a man cry."
"No, it's not that. This day is the worst of my life. First, I fall asleep, and I go late to my office. My boss, outrageous, fires me. When I leave the building, to my car, I found out it was stolen. The police said that they can do nothing. I get a cab to return home, and when I leave it, I remember I left my wallet and credit cards there. The cab driver just drives away."
"I go home, and when I get there, I find my wife in bed with the gardener. I leave home, and come to this bar. And just when I was thinking about putting an end to my life, you show up and drink my poison."0 -
M ~~~ Thanks for the info. Thought I'd send a cartoon. LOL
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So that's what bartenders mean when they say, "Name your poison" ! ~hee, hee0
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Catbird - Love it ! Reminds me of my 80+ yr old Mom and Dad !
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MTG & Jeanne_D:
Yep, only 10 more days left, for the Tamoxifen!! Since I take my pills at night, I'll be doing a dance of celebration!! Yes, it does call for a CELEBRATION!! My onc appt. is on Dec 11th.
Thanks!!
Harley
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These jokes and pictures are hilarious! Thanks for the laugh today! I needed it!
Wow Harley, only 10 more days left! Congrats to you early! What do you do after that? Do you take anything else or are you home free now with no more meds? How have you gotten along with tamox? Did you have any side effects or anything?
I know this can't be right, but, I have an upset stomach. Do you think the tamox did it to me or is it just my nerves about it? I have been taking it in the morning. Should I try it at night?
Does anyone know why we are supposed to stop tamox after 5 years? My oncologist never said and I never asked him. And, why do some only take tamox for a little while and then get switched to the Al's or w/e they are called?
Debby
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Have all of you seen the Pink Glove Dance on youtube? It is so funny!
It made me feel like dancing, so, I am! HAHA!
Deb, I don't know about your upset stomach. I just started tamox myself. I am sure someone can help you out with an answer. This is all so new to me.
Love the joke and pic Jeanne and Bonnie! Made me HAHA some more!
I am having trouble keeping up with this thread. It goes so fast for me. I hope I didn't leave anyone out. OH, and almost congrats Harley!
Have a great day everyone!
Lex
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I think the reason for switching to AI's has to do with menopause. I'm on Tamox until I am post menopausal and then I will go on an AI. My onc said that AI's have less side effects, but only work on post menopausal women. So I think that's why people switch halfway through.
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DebbyM
I was told to take Big T at night with a snack to PREVENT nausea (or at least Iwouldn't notice it when I am sleeping. It 'peaks' in 5 hours or so, so the hot flashes/night sweats (if you have them)can mainly occur also when you are alseep. I have had a slight upset stomach from time to time in the night, so yes, Big T CAN upset your stomach.
Re the five years on Big T - it is my understanding that after five years, the drug seems to make matters worse. It has been found five years gives us all the protection we need (but who really knows). Even with a switch to an AI for post menopausal women, I think the combined time is 5 years.
Re the switch - some studies seem to indicate the combination of the Big T followed by an AI are more effective than just Big T alone. Even though I am post menopausal, my onc has me on the Big T (and doesn't plan to do any switch) because of the osteoporosis issue with AIs. Big T protects the estrogen in bones whereas AIs prevent estrogen in the whole body, creating problems for those of us prone to osteoporosis. That said, I will be following the latest research carefully. In two-three years, if it looks like the switch is very best, I'll request a switch and likely will also have to go on some med to prevent osteoporosis.
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Caroline is correct; an important study found that after 5 years, T might cause ER Negative Cancer. But note: IT FOUND NO RISK UP TO THAT 5 YEAR MARK
Discussing how 5 years on T is "optimal" http://www.cancer.org/docroot/NWS/content/update/NWS_1_1xU_Five_Years_Are_Optimum_for_Tamoxifen_Treatment.asp
Discussing study which founds that after 5 years, T can be problematic http://www.rxlist.com/script/main/art.asp?articlekey=105050 and http://www.cancerconsultants.com/adjuvant-tamoxifen-may-increase-risk-of-er-negative-contralateral-breast-cancer/
Video interview with Dr. Li (it's his study we're talking about) http://www.fhcrc.org/about/ne/news/2009/08/25/tamoxifen.html
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DebbyM.
My onc says the plan for me is to switch to an AI after 2 years on Tamoxifen... I am very young, to be postmenopausal, but I was dx'd with Premature Ovarian Failure at the age of 35... There have been some studies which show that for postmenopausal women, it is more effective for us to start with Tamoxifen for 2 years, and then to switch to an AI.
I also read that maybe some of these women who were helped by switching to an AI were not very good metabolizers.... so who really knows??Also, as to the FIVE year rule... we are only supposed to take Tamoxifen or an AI for FIVE years, because... at least with Tamoxifen, I read that sometimes, the cancer cells 'figure out how Tamoxifen works', and they actually are fed by Tamoxifen. I wish it were so, that after FIVE years, we were in the clear.... but that just isn't so for breast cancer. I personally wish I COULD take something after FIVE years, to help prevent recurrence.
thanks for the celebratory wishes!! How I wish I were finished with these hormonal treatments....
Hugs
Harley
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Thanks for the info. I guess I will start taking tamox at night and see if my upset stomach goes away. My oncologist really didn't say anything about when it might be better to take it. I wish they would tell us more, or, maybe it is just my oncologist isn't that great.
Lots of good info MTG. I really love when you post those. I never know where to go or how to even post them on here if I did find one. I will read them now. Thanks!
My tamoxifen ride so far is ok, if you don't count the upset stomach.
Should I say YAHOO! HAHA
So Harley, are you then going to go on the Al's now? I am confused.
Debby
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I didn't know this. We are NOT suppose to eat grapefruit with tamox?
I love grapefruit and eat it a LOT. Drats!
Someone say it isn't so..........please. I hate to call my onc just to ask this.
And if so, any other foods that are off limits?
All I know is to not take certain antidepressants, which I don't take any now or ever.
Ok, HELP me!
Susie
p.s. It is starting to look like Christmas here! I am doing some decorating of the house, but, having to clean it reallyyyyyyyyyyyyy good first. lol
p.s.s. I thought this was worth posting for all of us to see. I really liked it and it is so true!
1. There are at least two people in this world
that you would die for.
2.. At least 15 people in this world
love you in some way.
3. The only reason anyone would ever hate you
is because they want to
be just like you.
4. A smile from you can bring happiness to anyone,
even if they don't
like you.
5. Every night,
SOMEONE thinks about you
before they go to sleep.
6. You mean the world to someone.
7. You are special and unique.
8. Someone that you don't even know exists loves you.
9. When you make the biggest mistake ever,
something good comes from it.
10. When you think the world
has turned its back on you
take another look.
11. Always remember the compliments you received.
Forget about the rude remarks.0 -
DebbieM
Yes, I'll be taking an AI after I see my oncologist, on Dec. 11th...
Some have said that if you eat a little snack when you take the Tamoxifen, maybe that will help with your stomach upset.
Hope everyone is doing ok.
Harley
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Susie,
I am afraid grapefruit is really a no-no.
Check out:
http://www.drugs.com/drug-interactions/grapefruit-with-tamoxifen-2624-0-2145-0.html
Also, when I plug turmeric into the GeneMedRx site (which computes my drug/food/OTC interactions), my tamoxifen goes up (not a good thing as it means my endoxifen will go down). So that means I go WAY easy on any curried thing. Unlike others on this site who eat/drink some of this stuff, because I am an intermediate metabolizer of the Big T, I avoid soy, flax, anise, hops, licorice. I also have been told by an onc nurse that a drink a day increases the risk of BC by 10% so I am now down to a glass of red wine a week.
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MTG,
The risk of an ER negative tumor goes up with five years or more of Tamox, but the risk of a second ER+ breast cancer goes dramatically down (when taken for 5 years). Planning to speak with my onc about this, specifically whether staying on tamox for less than five years (i.e. 4 or 4.5 of years) would yield the same benefit (or close to it) re: ER+ tumors, but eliminate (or significantly reduce) the increased risk of developing an ER- tumor. Also, not considering an ooph anytime soon, but would having one eliminate the risk of developing an ER- tumor? So many questions . . .
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Susie, you should't be eating grapefruit while on tamox. And, I really like the 11 sayings you posted. They are so true!!!!!!!!!!
Caroline posted a great site to go to check it out. I am looking for one, but, seem to be computer illiterate for a moment. LOL
I learn so much from all of you. And, MTG, your links provide valuable information. I need to start doing that.
Glad that you are somewhat better Bonnie. What is it? A cold or sinus infection? Winter hasn't really started and so many seem to have colds, but, I think the weather is so strange. One day it is warm, the next day rain, then cold.
Wine and Beer! I need them! LOL Is everyone limiting themselves on their drinking? I haven't, and, wonder if I should. I probably drink a glass of wine 2 times or so a week and a few beers a few times a month. Not a heavy drinker, but, I like being able to have a drink if I want.
Jeanne
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Hi Folks,
Ah....SUSIE....... No grapefruit with Tamoxifen !!!!!!! I think grapefruit is one of the biggest offenders of all to mix with prescription medicine but I don't really understand why. Maybe one of our Tamoxtrain ladies will know WHY. It does seem strange. I will still eat an occasional grapefruit or drink the juice if I want to do it. Ornery cuss be me. LOL Now I mean just once in a while. For instance, when I first got sick and was sneezy, watery eyed, miserable, blah blah blah and all I had was a Benadryl tablet, I TOOK it. Matter of fact, I took 2 because I took another before I went to bed. Then, Next day I got one that didn't interfere with the daggone T. This is the most difficult one I ever took for reacting with EVERYthing.
Debby~ My onc told me to take the Big T either morning or night and when I had the hot flushes, he told me to try half in the morning and half at night. I have a pill cutter so I just half mine. It did cut down the number of hot flush episodes drastically so I just stuck with that.
Bonnie
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J414 -
As I understand it, there are NO ER NEGATIVE WORRIES about staying on T for the full 5 years; it's only after 5 years that becomes the concern. Of course, I realize that the idea of a fixed cut off date (i.e. today is good; tomorrow is bad) doesn't make intuitive sense so asking your doc both for the best info and your piece of mind is always a good thing.
As for Oophs, they (a) reduce the risk of ER POSITIVE cancer since the ovaries produce estrogen and estrogen is something that feeds cancer (that's why med oncs will sometimes give women with BC Lupron or other shots; this is Ovarian Suppression/ Ovarian Ablation.) See http://www.breastcancer.org/treatment/hormonal/ovary_removal.jsp and, (b) they are an aggressive way to address concerns about potential of ovarian cancer, which is sometimes called a "silent killer" because there aren't necessarily signs of any problems. And of course, (c) sometimes they're necessary/ advisable when T causes crazy bleeding or cysts.
Now, before I start a wave of panic, there are ways to safeguard against undiscovered Ovarian Cancer (just as there are ways to safeguard against BC other than having a prophylactic double mastectomy) - (1) the BRCA test will tell you if you're in a high risk category (mine is scheduled for January); (2) Transvaginal Ultra sounds every 6 months can keep tabs on changes in your ovaries and uterus ( I had one in November and will do one every 6 months) and (3) although it's somewhat controversial, there's also a blood test, the CA125 that may signal ovarian cancer. (Had my base line one in November as well) But note: while this test is considered accurate for good news; there are apparently lots of false positives so depending on your personality and level of worry, it might be best to skip this test. See http://labtestsonline.org/understanding/analytes/ca125/test.html
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Hi everyone! I found this great site back in Sept when I had my bilateral mastectomies but I'm just now getting up the nerve to actually post! I've been on the tamoxitrain since October 19. So far, so good. I haven't really noticed any changes but my med onc said that usually around the second or third month is when the side effects kick in. I'm scheduled for bilateral oopherectomy/hysterectomy on Mon Dec 7 so I"ll probably be a basket case after that!! I just wanted to say hi and tell you how great it is to have a group like you to learn from. TCK
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Welcome on board this Ttrain TCK. It's a great, cheery, knowledgeable group we have here - of all ages, I think. Lots your age I'd guess. I may be the oldie here.
No question is a dumb one and all of us decide for ourselves which bit of advice/info will work for us.
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Oh, Happy Day!
Don't ask and I won't tell! hehe Caroline and Bonnie....waaaaaaaaa No grapefruit. I really love it! But, I will have to learn to NOT love it I guess now. Thanks for the link Caroline. I love when you guys post those for us. I use all of them. MTG, good and valuable info. I don't always get to read everything you post, but, I eventually get back to them. I was shocked by the statistics in your one link:
According to the National Cancer Institute, prophylactic ovary removal would reduce the number of new breast cancer cases among high-risk women by 50%. This benefit occurs only if the ovary removal is performed before menopause. Removing the ovaries before menopause significantly reduces the level of estrogen in a woman's body. A 2008 study showed that reduction in breast cancer risk after ovary removal is higher in women with an abnormal BRCA2 gene.
Reduce the number by 50%! Wow! That is huge!
Glad you liked those sayings Jeanne. I thought they were really good!
TCK, Welcome. Why have you just been reading and not posting? Everyone here now is so nice and so helpful. You can say or ask anything and someone will reply to you always. I have found such valuable information and such good friends in the short time that I have been on this thread. It is a great place to talk about tamox or anything else that you want to and not worry. So, post whenever you can. Also, wishing you good luck with your surgery. I will be sending you lots of good positive thoughts and prayers. You will be fine and back posting on here before you know it.
Susie
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Susie - Please dont let the statistics sway you too dramatically one way or another. Numbers are a funny thing. They can pretty much be made to say whatever the person performing the study wants them to.
BC.org is simply giving us that study's bottom line; to really inform yourself you'd need to look at that study: how many women were involved (smaller studies being less meaningful), how they defined "high risk women", how they broke up the groups and most importantly how they concluded that "new breast cancer cases could be avoided" Proving and then quantifying a negative, i.e. that BC is "avoided" is a really difficult task - for example, we know intuitively that, at a busy intersection, a stop light would "avoid" new car crashes. But how would you quantify that ? You'd have to look back at prior years but you wouldn't really know that new crashes were avoided, simply that there weren't as many ? There could be other explanations, e.g. maybe they built a new road....See what I mean or have I made you confused ?
TCK - welcome. Since you've been on T for a while maybe you can share your experiences ? And know that we'll all be sending positive thoughts your way on Monday.
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Hey everyone on the tamoxitrain! How is everyone doing?
I took the tamox tonight with some crackers, instead of in the morning. I hope that is ok since I just took it this morning too.
I want to see if my stomach ache will go away. I don't know that tamox did it, but, I never have an upset stomach for no reason. Want to welcome TCK too and wish you good luck with your surgery.
Anyone know much about Zometa?
Debby
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Debby, I don't know much about Zometa. I hope someone can post something for you about it. Hoping that taking your tamox at night is easier on your stomach. So far, I just have had the headaches, but, I haven't had one in 2 days now! YAHOO! LOL I still love the Yahoo thingie!
Here is a morning smile for all of you!
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DebbyM - I'm sure you'll get lots of answers from the ladies here but, in the meantime - and perhaps even better - there's almost certainly many thread which go into this in depth. In the upper right hand corner of this page, in the burgandy border you'll see:
Welcome, DebbyM I My Preferences I Log Out
- Member List I Help I Community Rules I Search
If you click on "Search" and plug in "Zometa", you'll get tons of results. These will be listed by date, most recent first. You'll probably want to page down and click on "Sort by Relevancy". Bet it answers more questions than you can imagine.
Next, re: the National Cancer Institute Sudy - You can read the abstract of the study at http://www.ncbi.nlm.nih.gov/pubmed/19141781 and the Article citing the 80%/ 50% statistic at http://www.cancer.gov/clinicaltrials/results/BRCA0209 (Still looking for the full text)
Please note that the article states: "A new meta-analysis of 10 independent studies has revealed with greater confidence than ever before that the risk reduction of this surgery can be 80 percent for ovarian or fallopian tube cancer and 50 percent for breast cancer."
Just be aware of 2 things: 1) "Meta-analysis" - These guys re-examined other people's data rather than doing their own studies. There's no indication as to how they picked their 10 studies- whether whether they looked at all available studies, chose them blindly or even cherry picked them to get these end results. and 2) "Can be 80%/ 50%" - They didn't say that risk reduction "is" 50%; "Can be" suggests that there are qualifiers and suppositions that were involved but unfortunately we aren't told what these were.
Way passed time to go to sleep. Night all.
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How do I know if Tamoxifen is right for me?
I had DCIS and decided on mastectomy of the breast. Sentinel biopsy showed no lymph involvement, so no chemo or rads were prescribed.
Receptors are positive, but I am afraid of the risks associated with Tamoxifen.
Breast cancer does not run in my immediate family, although my grandmother on my mother's side died from it.
Even my oncologist doesn't seem 100% sure.
Please give me your thoughts! I go back to the oncologist in 2 weeks and would like to make a wise decision.
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