Bottle o Tamoxifen
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PattiB,
I think you are right, Meg not me, although I am a little spacey!
Have a great weekend!
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Well, gee, you miss a day and there is sooooo much to read. Welcome Meg and Linda and Lauren. I hoppe I got everyone.
Patti, Rachel and I met up in Allentown. I have used Geisinger for all my doctors, except for rads. I did my rads tx at Frances Hughes Cancer Center at Pocono Med. Center. Only because it was so close to home and I was still working. I work as an associate teacher in an Autistic classroom. I work for Colonial Intermediate Unit 20!
Now for the news I got today~~~ I will be having an ooph some time in Aug~~surgeon wanted to know why I did not have it done earlier. I told him that when I asked before all this in 2006(long story)my gyno said "not to worry, your mom's ovca was probably caused by a virus". It was a Geisinger doctor too.
Okay now for a serious question~~~ Dishwasher, rinse or just scrap dishes? LOL, this is serious in my house. I say rinse, so dishwasher does not smell and so we do not attract bugs. Yes I have a bug phobia, I lived in FL for 13 years and never had palmeto bugs( oversized cockroached), I do not want bugs here!
Have a great weekend, on the train until after ooph and onc changes meds.
Oh BTW, the surgeon who will be preforming the surgery, is the head of the dept. He hired my BS and is a fertility specialist, so I have the utmost faith in him. Plus he said what I wnated to hear."let's get this done yesterday"
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Mary - Boy very serious - scrape - we are on tank water (no town water connection) so every drop is precious. We call our dishwasher the "dirty dishes cupboard".
I will be very interested, and obviously concerned, about how your ooph goes.
Hi Patti.
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Hey ladies,
Me too joining as a reluctant rider on the Tamoxi train. I've been reading your thread and you all make me laugh alot (and cry sometimes). You seem like a wonderful group of women!
I've been taking Tamox for 2 1/2 months - nothing major on side effects - the norm, some hot flashes, no period, tingling calfs, etc....
Rachel, I loved your latest (long) post - it truly made me cry at work today and not for sad reasons. Your words also make me laugh so please keep them coming!
Julie
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Hi Julie welcome aboard.
.. heard a good one today via facebook - "if you drink every day you are an alcoholic." Thank heavens I only drink every night....."
Really going this time - have a great day/nite everyone.
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Mary - I definitely scrape and/or rinse depending on what's on the plate, definitely rinse everything first. If you live in Allentown that is about 1 hour away, definitely could meet up anytime this summer.
Makraz - I meant I was spacey - no one else.
Helena - I like your quote! I am definitely signing off now too!
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PattiB, I know, I was just letting you know that I am spacey too! Maybe tha a Tamox s/e? Can I blame it on that??
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Hey Lauren, I cried a few weeks ago at the end of my Rads treatments too. It's great that you can laugh about this with your boys, what a great life lesson for them to see you with humor about a bad mood in this tough time!
I've been on tamox about 11 days now (not that I'm counting...) At first I called it my little PMS pill, but things are getting smoother a bit. I have trouble remembering to take it (don't tell anyone that I'm a pharmacist). last night I had to get up in the middle of the night when I remembered. Will go take one now...
Love & Light,
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I've been on the train for 91 days now (just refilled my prescr. that's how I know). It has been generally a smooth ride. My problem, I will get a hot flash, then I will cool off and "be normal", then get chills, then hot...it is just a vicious circle!!!! How can you not think about bc when these s/e control your life? Sweating and freezing in the same minute???
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Artemis......I had to go off of Prozac after 20 years. I now take Effexor.
Don't forget ladies that you can't have grapefruit while on Tomox. Does anyone have a link on that info? Rachel?
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Hey, Mary and Patti B, I am in Bensalem, about an hour from Allentown, and less than that from King of Prussia. I am definitely interested in a get together.
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Aye aye cap'n... I can't give a link to Susan Love's site because the pages don't come up with a url, but if you put "grapefruit" in her search engine you get articles like this.... (excerpts)
though, grapefruit juice may actually reduce the absorption of certain medications. When this occurs, a person gets a lower dose of the drug than they should be getting, which also can be harmful.
What drugs should you be concerned about?
Doctors are especially troubled by the interactions that may occur between grapefruit and heart or blood pressure medications, like Cordarone, Pacerone, Procardia, and Adalat, as this could lead to heartbeat irregularities. In addition, mixing grapefruit with cholesterol-lowering drugs, called statins, like Mevacor, Lipitor, and Zocor, can increase a person's risk of developing a painful muscle disorder.
Other commonly used drugs that are known to interact with grapefruit include:
•Antidepressants, like Zoloft
•Antihistamines, like Allegra
•Some forms of estrogen
•Some protease inhibitors for HIV
•Tranquilizers and sedatives, like Valium and Sonata
To be on the safe side, if you eat grapefruit or drink grapefruit juice regularly, you should ask your pharmacist about any drug you are taking and whether it can be combined with grapefruit or its juice.Another concern about grapefruit: Researchers reported in July 2007 that grapefruit, which increases blood levels of estrogen, might also increase breast cancer risk
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increase breast cancer risk?
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Grapefruit juice was first found to contain a chemical compound that can inhibit the enzymes the body uses to break down certain medications in 1989. Since then, grapefruit and its juice have been found to interact with a number of different drugs, including estrogen....in 2006, the US Food and Drug Administration (FDA) had mandated that all hormone products for postmenopausal women be labeled to include a warning that grapefruit juice might increase blood levels of estrogen... The increased risk from eating 1/4 or more of a grapefruit per day was seen in women who never took hormone therapy to treat menopausal symptoms as well as in women who were taking estrogen alone or combined estrogen and progesterone. Breast cancer risk was also higher in the thin women who ate grapefruit than it was in the overweight women who did.. I don’t think that postmenopausal women should foreswear grapefruit forever. That said, if you do eat a lot of grapefruit, especially if you are taking hormone therapy to treat menopausal symptoms or are at increased risk for breast cancer, you might want to replace some of that grapefruit with oranges or other citrus fruit.
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So... its not a done deal and its not just about women taking Tamoxifen or AIs or just postmenopausal women...but... kind of like the soy issue... after all we've been through, why risk anything for grapefruit? As long as they leave my chocolate alone... they can have the grapefruit and soy.
And I can't eat grapefruit anyway because of my acid reflux. But... of course I ate a grapefruit every day for years... augh augh augh
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Mary- I scrape and wait til dw is full to save water and all that, but you just explained to me where the frikin fruit flies are coming from!
I was on edge all day yesterday thinking about what you might be hearing at the doc's. Sounds pretty darn good considering and I'm happy you are confident with this doc.
SE PA area gals, lessee that's Mary, PatMom, PattiB and me so far, right? We totally need a get together. Mary and I have learned its probably best to be without the kids because we end up talking a lot of breast cancer nitty gritty that maybe we don't need them to hear. I'd like to get some kind of walking in if possible, a little exercise. Delaware Water Gap? Valley Green? Valley Green would be ideal in that we could walk in the shade and then have a nice lunch at the Inn on Valley Green, but its kinda far for Mary. Allentown is kinda central for us, right? Anyone know a place for us? There's always Wegman's... and we can get the grocery shopping done at the same time!
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ivorymom- that weird tingly feeling reminds me of YOTH's first Tamoxiday, she got high!
Too bad it didn't get her high the next day... oh well. Leggy- I am just paying dues up front because I have no clue what's going to happen to me when I start taking the Tamox in Sept (27th I think, maybe sooner if it gets cold.) I am fortifying myself by reading everyone else's experiences and all the studies I can. SHOULD be no problem. SHOULD be a bunch of hot flashes and some vaginal discharge. I can't help but have the same fears as everyone else even though everything and i mean EVERYTHING I am reading says there's nothing to fear and everything to gain. You gals are my inspiration. I'm gonna be hanging on to you for dear life come September...
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Helena I still picture you going everywhere in a big school bus with an enormous stiletto on top...
and you are one of the people here who gives me faith in many ways, not least of which is how you dealt with one of my biggest Tamoxifears. You were having the blues until you took a Tamoxibreak, just 2 weeks and man, you just bobbed back up to the top of the glass. I wonder where JuleZ is too, we can hunt her by clicking on her profile and reading her most recent post? My guess is that she's doing well - because generally that's the norm. When we don't hear from someone it's because they are doing really well and don't need help- they're too busy! At least I hope so. RADs ending... I can't really comment because I was REALLY angry with my RADs ONC and I still am. But I came in on the last day (after properly applying a serious dressing to my burn, which totally sucked) and I was dressed to the nines. I felt a foot taller. My RADs pals applauded. That whole sort of slave mentality, like Oliver in the movie "Please Sir, may I have some more....LIFE?" What do I have to do to get through this treatment so I may have some more life please? How much shit do I have to eat from haughty doctors who fail to tell me that they are unintentionally radiating some of the skin under my arm while aiming for my boob and nurses who forget to tell me simple things like that the doctor isn't actually in today so I didn't have to wait a half hour for nothing, or ... well you know... So I was dressed as a lady, not a frightened little subservient lamb and when they said "Now you have to see the doctor" I said "sure" and didn't go. What, are they going to take their radiation back if I don't kowtow to the doctor one last time? Feh. So no, I didn't cry. I felt free. And I went directly to my ONC after, at another hospital and got my instructions for what's next. Made him feel better too to see me standing tall.
But back to my rage-less stuff... Going on Tamoxifen immediately after RADs may confuse some of the SEs. I am sure you have been told (I hope) that you probably will have your worst SEs from RADS the week after it ends. (RADs, the gift that keeps on giving).
Lauren- i wonder my my 17 month old thinks about MY attitude!!!!
Like Checkum says... fight like a girl
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Artemis- even though the hot flashes have been shown to say that the recurrence rate is even lower for those who have them on Tamox, the women who don't have hot flashes are still getting the benefit from Tamoxifen, I think unless they are not metabolizing it because of some other reason. I can't easily find the part of the study I read that goes into that, like explaining how it could be that a woman on Tamox who isnt getting hot flashes is still getting the benefit even though (the same?) study says women who have the hot flashes are getting more... one of those good ol' cancer conundrums... but anyway...
I was looking up to see if there are drug interactions between Wellbutrin and Tamoxifen... I know there's something, like what Renee said about switching to Effexor. So looking around I found another post here on BC org from someone having some issues and getting some interesting responses from a fellow BC org person who is a pharmacist:
http://community.breastcancer.org/forum/47/topic/721700
And there's an alert on Pharmacy Times
http://www.pharmacytimes.com/issue/pharmacy/2009/2009-03/2009-03-10041
I know nothing about Pharmacy Times and I tend to suspect any information that isn't on a site I know is good for us, like Susan Love or The American Cancer Society... having said that, here's an excerpt from that article:
"What Drugs Inhibit CYP2D6?
Many drugs are CYP2D6 inhibitors, but antidepressants are probably the most important drugs in patients receiving tamoxifen. Estimates suggest that up to nearly a third of patients on tamoxifen are also taking antidepressants. Fluoxetine (Prozac), paroxetine (Paxil), bupropion (Wellbutrin), and duloxetine (Cymbalta) can substantially inhibit CYP2D6 and may reduce tamoxifen efficacy....It would be prudent to ask patients on tamoxifen if they have discussed the CYP2D6 issue with their physician. A growing consensus suggests that every patient taking tamoxifen should have testing to determine his/her CYP2D6 genotype. This genetic testing is commercially available, and—although it is not cheap—it is apparently covered by at least some insurance plans."
Now before you go off chasing the CYP2D6 test, know that it's controversial and often inconclusive or says you have a deficiency when you don't or don't when you do, so most of us should not bother... and really, I am mostly surprised that your ONC brushed you off when you asked about the interaction. That's weird. Lots of gals on this thread and KAK's were on these kinds of drugs and all got switched to Effexor, and btw all of them did great on the new drug. So I don't get it why your ONC is acting like this is something new or uninvolved?
WebMD also has it - this is like all over the place... as much as I still don't love WebMd as much as ACS or Susan Love...
http://www.webmd.com/drugs/drug-13509-Wellbutrin+Oral.aspx?drugid=13509&drugname=Wellbutrin+Oral&source=0&dmid=1740&dmtitle=STRONG+CYP+P-450-2D6+INHIBITORS%2FTAMOXIFEN&intrtype=DRUG&pagenumber=9
"Wellbutrin Oral
Tamoxifen/Strong CYP P-450-2D6 Inhibitors
This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking or discontinuing any drug or commencing any course of treatment.
Medical warning:
Serious. These medicines may interact and cause very harmful effects. Contact your healthcare professional (e.g. doctor or pharmacist) for more information.
How the interaction occurs:
Certain medications may decrease the effect of tamoxifen by interfering with how the body activates tamoxifen.
What might happen:
Your tamoxifen may not work as well at preventing your breast cancer from returning. "
C'mon c'mon c'mon... your doc needs to get a wake up call. Tell him you want to try Effexor instead. I wouldn't even bother with the CYPwhatever test. Of course, what I say and 25 cents will get you a dial tone at most payphones and nothing else...
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IvoryMom/Meg- great info!!! Thank you for posting it! And I am very sorry you have to go through this.
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Meg- rock on with all the great info!!! Did your Mom have the BRCA test? If she's BRCA positive then its great news that she's managed it so well!
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meg- Hell yes, stickin together! While it stinks beyond words that your family got hit, its a good thing that technology has at least caught up to where you can identify the !(@!@ gene and get a little ahead of it. And your family is kicking it's derriere to the curb. Also goes to show ya more cancer conundrums. If I am squinting correctly, your pic looks like you are Asian- although you live in the US which in itself is enough to kick you into the higher risk group, still, Asians are supposed to be less likely to get breast cancer, and it's supposed to be Jewish women of Eastern European descent (like me) who are most likely to have the BRCA gene mutations- while you and Mary (Irish I think) got stuck and I escaped this one and supposedly the great preponderance of women with BRCA gene are also triple negs, which clearly you are not and probably Mary is not. I plan to get rid of my ovaries anyway, I ain't using them and I don't like the whole "silent killer" thing about not being able to check them until it's too late. I hope you and Mary will update us and whatever tips you get from your mom and sis. Your whole family sounds totally "quality" to me. Hugs and courage for the oomph babe.
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My Grandmother on my father's side, got BC when she was 48yrs old, she had a mastectomy, in that breast, and got it one year latter in the other breast. She died shortly after, and I never knew her. My Onc. mentioned at our first meeting, that he would consider, having my ovaries removed, by then just told me to have a Pap smear, annually. Personally, I don't think, I want children at 53, Wolfie's all the work I need.
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Great info ladies, thank you.
As I posted before I am awaiting results from BRCA1/2 test b4 deciding on Ooph. My GP (general practitioner) said just to keep up with annual pap smears if results are clear. Doesn't quite seem enough but anyway. That "silent killer" freaks me.
Ivorymom/Meg - great to hear about another twice a day popper. I should be feeling secure in the knowledge the drug is working its stuff (CYP test Extensive Metaboliser) but with no SE's it does eat away at my paranoia!!!! Pathetic hey.
Princess - I too forget about my nite time pill - really, how hard could it be!!! To me it is a good sign that it doesn't control my entire thinking. I was told by my Onc not to worry if I miss one every now and then - it is a 5 year course.
Have a fantastic Sunday everyone, my bus is awaiting
big hugs
Helena
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Week one of Tamox down and no SE, as a motter of fact I get night sweats a few nights a week b4 tamox but have not had any since starting it, could be it is quite cool in Michigan too.
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Isn't it awful, there isn't a test for ovarian cancer. My OBGYN said to come in if I get diarrhea for 2 weeks...NO YOU DON'T SAY!
Helena, I'm an Intermediate Metabolizer, with lots of hot flashes, who has to work outside in 98degree weather, so go figure, maybe it will all even out. Besides, when it's really hot, it's harder for me to tell, sometimes what's hotter, me or the weather.
I'm not a big hugger, but hugs to all,
Leggyj-(When I was young, my nickname was Stilt)
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meg- that's a shocking and reasonable theory about the lower incidence of breast cancer in Japan. I have native friends there and was surprised by a lot of what goes on medically. The part about ovary removal being as good as chemo rings a bell, I think it was in a Susan Love article that she said there is a growing concept that maybe the biggest benefit of chemo reducing recurrence was the chemo induced menopause itself, not the chemo drugs.The side effect is the cure? So your GP managed to order you regular MRIs instead of or additional to mammos and US? Thats FABULOUS. Fabulous!!! I mean, pain in the ass and all, but still... that's real life saving. I bet your GP sleeps well at night. I hope so. Six months before my DX I ran to the radiologist with a lump. It was a cyst that had ot be aspirated (none of us can remember if it was the same breast, but I will check in September when I go for follow up mammo). So happens that I had started drinking a bunch of soy milk (hey, it was chocolate and low cal) in addition to my favorite edamame, soy based meat substitutes, agedofu... So I ain't eatin no more soy.
For all the gals who are being told not to worry about ovaries but have pap smears- I don't get that at all... pap smears are about the cervix, not even close to the ovaries.
Carolyn- my guess is... them hot flashes will be a-comin shortly!
Leggy- NO YOU DON'T SAY... ::::cackle:::: ::::cackle::: girl you totally crack me up...
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Rachel - probably wasn't clear but I was told to have pap smears to just keep an eye on me during tamoxifen treatment for anything crappy going on there (cysts etc.) - as for ovaries unfortunately like you said it is the silent killer hence all our ooph talk. It would be really nice to know if I have no side effects now on tamoxifen that I won't have big side effects in menopause (either natural or surgical)!!!!
Hey Leggy - My nickname was Helena the Hyena. Stilt sounds preferable!!
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Hello
I am joining the tamox train in the next week. Finished chemo about 6 weeks ago, had exchange surgery last week, and getting ready for this last (and so very long--at 5 years) ride with tamoxifen. I'm 44 and chemo put me in chemopause and with hot flashes, so I figure it will be more of the same on the medication. I'm also worried about moodiness and weight gain - I'm about 15 pounds overweight (from when my son was born 11 years ago -- nothing to do with BC) but managed to at least not gain any weight during chemo. I can't do much exercise for a few weeks though due to the exchange surgery, so we'll see how it all goes.
It has been so helpful reading everyone's posts to see the range of experiences with this medication. Thanks.
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Rachel, I try to lighten things up now and then...although most people think I'm funny, when I don't even try. Everything sounds a bit dirty, when it comes out of my mouth, for some reason. But your really funny!
Meg sounds like your getting the VIP care, good for you. I think I'm now at the point, where I'm tired of tests, waiting, and worry. At least until the next appointment, anyway.
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Okay, I've had my bottle of tamoxifen for a month now and I haven't started taking it. It came while I was in the hospital having my bilateral mx's and I have been so anxious about the side effects I haven't taken it yet. My tumor was 96% ER positive, so I definitely need it, but I just keep looking at the bottle and can't bring myself to take it. I know I shouldn't worry, but I can't help it, this whole damn thing has been so overwhelming. It doesn't help that I'm a week late for my period and I have major PMS! No chance of being pregnant, hubby had a vasectomy 2 years ago. Any advice???
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TerriJ - if you know you definitely need it (like me!!) putting it off will just make it worse. I'm doing really well 4 months down the track and so are a lot of other ladies. This might sound strange as I said not to wait but from my experience I would take the first pill when you have no PMS and feeling good and once your periods have finished. Not scientifically proved but worked for me.
Welcome aboard aoandrews - had my exchange surgery 4 weeks ago and it is hard because you can't do any decent exercise so I am trying to eat well - can't wait till I can get back into it!! You have certainly had a busy few months. As for moodiness, well I think all the BC crap is enough to make the most saintly woman moody. I'm a little less "sweet" but it isn't necessarily a bad thing.
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Helena, Queen of the Desert, Official Greeter of the Bottle 'o Tamoxifen thread... Welcome Ladies.Oh and I absolutely second everything Helena said.0
