Bottle o Tamoxifen
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Hello all, I have been lurking a bit but swamped getting ready to leave on vacation. Teh wine is a brewing the grape juice is done, the garden is 1/2 way put to rest what survives the next week will be taken care of then! Diane great you are doing so well, sucks you have to go thru it.
Leggy I like my cotton Bali bras, I went thru about 6 different one after my lumpectomy in May but like these, can let you know which one next week, sitting at the hotel right now.
Hugs to all will post maybe while gone but will have pics on my retrun headed to Albuquerque,Santa Fe, Las Vegas, Bullhead AZ and who knows going to get hugs from my sons!!
Later take care
Carol
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Leggy, I have had trouble w/ bras since lumpectomy. I have been wearing tank top style bras, but they flatten my boobs. I just bought two new ones form JC penney and so far so good.
Rachel the idiot at school has finally been fired, but she may sue. For now we can relax a bit knowing she will not be back in our classroom.
Hope all have a good day. Looking forward to a three day weekend!!!!!!!!!
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I have been on Tamox for just about a month and weighed myself and did gain 3 pounds BUT I also have been going wild on my diet a LOT- I pretty much deserve these 3 pounds.
Carollyn- collecting hugs from sons- what a GREAT thing to do!
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Rachel- I've been on tamox for 5 weeks - not a single hot flash - my gyno said everything is fine etc., and the onc won't run the metabolizer test until december. The only "change" is that I feel a little bloated - like constant PMS, which actually causes me to eat less (yay!), but I've been exercising less, so i'm holding steady. Do you feel any different?
I also mentioned the Vit D to the gyno and she said "we will talk about that" - I think she was suprised that I was aware of the correlation!
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bcamnb, thank you for the black cohash info! will definitely avoid that. So much infro to process!
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Rosered,
I will be starting on Tamoxifen next week. My onc. also suggested that I take vitamins C and D.
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Good Morning from Canada Everyone,
I am less that a week onTamox. It mattered to me how my body metabolized this drug so I did the test myself this summer. It is extremely accurate, quick and easy - buccal swabs. (Check out Genelex in Seattle Wash USA) It turns out I do not metabolize this drug well and so I need more of it and also have to be very careful of ingesting anything that will inhibit its being converted to the active agent, endoxifen. If you also google CYP2D6, you'll get a lot of information on how Tamox works in our bodies. I think it is essential to know if this drug is helping or making things worse in our bodies - quite apart from the "usual" possible side effects. AND I have found out there is no better advocate for my health than me!
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On another discussion board, the following was posted yesterday:
Kashcraft wrote:
New reserch published today in JAMA further confirms the importance of 2D6 testing to determine tamoxifen efficacy. Please share this information with your oncologist and anyone you know taking tamoxifen. This research further confirms that testing should be the standard of care.
The full JAMA article is at http://jama.ama-assn.org/cgi/content/short/302/13/1429
An abridged news version is at http://www.medpagetoday.com/HematologyOncology/BreastCancer/16306.
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Wonderful article EXCEPT that 95.4% of the women were post menopausal!
What about those who are premenopausal??
I wonder if there would be a diference becasue premeno women produce a heck of alot more estrogen to bind up than post meno.
Just my 2 cents worth
Trish
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j414- I am afriad to say that I feel no different at all- only afraid because I don't want to jinx it! I am happy this way! Yeah I think my ONC feels the same. If I start having HF within a couple months we probably wont do the test. I think it's weird about the Vitamin D test... that one is pretty standard.
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keno- if your ONC saw your Vitamin D level was low, then taking it is a no - brainer. Vit D has been conclusively shown to be related to BC occurrence... too much is a bad thing too... you want to be like Goldilocks and get it just right!
I am with you Trish on the premenopausal women- we went over this before with J414 and the mayo clinic
J414- this is totally my guesswork and I have NO real other empirical data to support my conclusion but I *think* maybe the SEs on Tamox have to do with what point in your cycle you take it. Do you know what cycle day you began? It would make sense if you were kinda PMSing then and feeling kinda PMS-y now....
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rosered, just a correction on the referral someone made to "black cohash" or "black codash" --
It's actually "Black cohosh." The research is inconclusive and inconsistent on its effect. Some believe the estrogen-like effect may only apply to certain parts of the body (not the breast). IMO, it should be used with caution by women who are at risk for breast cancer. Talking with your doctor about it would probably be the best thing to do if you are considering it.
My family doctor mentioned it in a conversation with me over a year ago as a supplement to support stopping my estrogen replacement therapy. This was BEFORE my breast cancer diagnosis and I tried it, but couldn't tell it had much effect on my hot flashes.
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Rachel, I would be interested in that research you found. Here's the thing-- 2 years ago my onc said I didn't have to come back unless I had any problems with m'grams, which I have not. I'm sure if I asked him he would say 5 years, that's what the 'standard' is.
But with the small DCIS I had, some folks are wondering why I was put on it at all.
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Rachel wrote about a friend on Tamoxivacation--- what happened? Did she stop and then restart taking it?
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inspie- I should have bookmarked that study, it was posted on this thread some pages ago. I was just about to start myself so I just passed on it. I am sorry to bring it up and not be able to show it to you, but I hope you can ask your ONC about it. I have to run out now but I promise to look for it later tonight when I can. Meanwhile, if you can go back to around September 15th ish on this thread you will find it.
On the why you were on it with "just small DCIS" please look at this thread:
please stop minimizing my diagnosis
I can't say more about my friend who went off Tamox and became annoying because she's on this board (not this thread) and she'd be PISSED!
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Here's an article about the article... I dont have time to read it and I caution you to read the actual article, the news is not reliable...
http://www.guardian.co.uk/science/2009/aug/25/tamoxifen-breast-cancer-risk-benefits
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j414--keep an eye on the bloated feeling. One SE of tamox is ovarian cysts and that can feel like that. Just have your gyn chk the next time you are in for a chk up--or ask to go in. They can easily chk and tell them you are taking tamox.
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Rachel - Thanks for the Evista suggestion in lieu of Tamox. but when I googled it said in bold letters basically that if you have had a blood clot or are even thinking about having a blood clot you can't take this drug. So thanks for the thought anyways. I am always open to suggestions!
J414 - I have bloat too and AllieM is right about the cysts - I have bloat & cysts too!
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bcamnb, thanks for posting the link to the article! Very useful, because a year ago when I had the CYP2D6 test, my onc said that he wouldn't use the results to determine my treatment. I asked for the test anyway and he humored me. Now I have something I can show him and say, see I was right to ask for this test. Oh the joys of being treated for a disease that the standard of care changes os rapidly. By the way, I am a normal or intermediate metabolizer.
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AllieM - re: bloating and cysts - did not know that. I have a family history of ovarian cancer - aunt diagnosed in her 20s and just about all of the other "sisters" had oophs (due to severe endometreitis) in their early 30s, so I've had a couple of pelvic sonos. But given my family history, blating and and tamox risk factor, I will definitely step up screening beyond 2x a year if necessary.
Rachel - very interesting re: PMS b/c I actually started Tamox a couple of days before my cycle last month. I will talk to my gyno about it at my next appointment in three weeks.
And you're right on about DCIS and Tamox. It just takes one rogue DCIS cell to start an invasive clone and since it is impossible to predict which DCIS will progress to invasive cancer the only options are to roll the dice or throw everything at it (which is my plan!).
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Hi ladies-
I was recently diagnosed with BC and my onc recommended starting Tamox immediatly after my lumpectomy since I am 43 and pre-menopausal. I was very grateful to find this thread and have slowly been reading through it. I have been on Zoloft and Wellbutrin and just made a call in to my psych to have these meds changed to Effexor.
The side effects really such...horrible bone, muscle pain and cramping...I bought some tonic water and take calcium/vit D already...looking into the BC yoga as well...anything else?????
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j414--didn't mean to alarm you but wanted to give you a heads up. It's probably nothing....but always good to be aware.
Shelleyr25--welcome! Sorry you are having bad SEs--we are the same age and I have been lucky not to have any palpable SEs thus far (well, except an ovarian cyst!)...and I always hate to say that in case I jinx myself!!! My onc said they don't know why but younger women seem to do better on it, SE-wise. Hopefully the Effexor will help. You may want to take glucosamine for joints. Other ladies on here can give good advice on the cramping since it has come up a lot. Perhaps too your SEs will lessen in a few months--that has happened to people too as their bodies adjust. Good luck!!
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bcamdb, I've been taking a black cohosh/red clover mix, but the oncology nurse said it was OK. Been on tamox for 9 mos., went off it for a few weeks while I was between insurance plans, and when I started back, the hot flashes were incredible. The herb mix is the only thing that helps. I had checked to see which remedies were not phytoestrogens and I don't remember black cohosh being on the list but I'll check again.
Better safe than sorry.
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AllieM - I appreciate the info, I have been feeling off for the past couple of weeks and I don't want any more suprises :-).
Interestingly, I get more info from this forum than I do from my doctors - I have to pull stuff out of them, it's so annoying.
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Well.....took my first Effexor last night and was slightly nauseous all day today, anyone on Effexor for hot flashes, and do the SE ease off after time? Love having a place to come to laugh or sound off!!!!! Loved my ladies from the July chemo thread, too! Will start my Tamox in 2 weeks........can't wait.....lol!!!!
BTW, will I have to stop Tamox when I have my exchange surgery in November????
Hugs,
Linda
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allie- quite brilliant to point outo the bloating and ovarian cyst thing... i mean, we're supposed to be watching for that stuff.
j414- yes in my informal totally not reliable personal observation, starting Tamox just before your period generally not great for SEs. If your ONC has ANY information relating to taking Tamox at certain points on your cycle I will be REALLY surprised. I asked my ONC (who you know I adore) and I researched the crap out of it and I can't find ANY study or any kind of reliable information, no one seems to care- which makes ZERO sense to me considering that this is all about our hormones and we run on the frikin cycles... as I am highly suggestible, I started on one of the "up" days of my cycle around week 2, when I feel skinny and happy and stuff. So far so good, but it may just be my own power of suggestion on myself In any case, I'll take the good feeling!
I can't be "right" about the DCIS, because I don't know poop myself, but if you read that thread of women with DCIS, and the women who had recurrences and metastases, and I think there's someone on this thread who had DCIS and opted for BMX and then they found a bunch of more SFBC in her boob tissues that were removed. I am not saying that DCIS patients should do more or less, just that if inspie was wondering why her ONC put her on Tamox for little ol' DCIS, DCIS is not nothing either! SFBC SFBC SFBC!!!!
Kookiesmom- damn. Meanwhile, I was just reading somewhere about Lupron. So maybe Lupron and Zometa?
Shelly- Welcome (sorry you gotta be here, but at least you got some fun company). Remember on the Vitamin D to have your level checked FIRST. If you are not deficient, don't take the Vit D, too much is as bad as too little. Now that horrible bone and muscle cramping ain't right, we should be able to do something about that...
Wildrose- Again, this whole thing about going off Tamox and then back on, it changes the SEs- although bummer that yours was worse after vacation. For both you and Shelly the idea of another tamoxivacation occurs to me, and again, I wonder if it has to do with when it lands on your cycle- but always always always check with your ONC first!
LindaSue- you're taking Effexor in advance of taking Tamox, right? I can't tell if the nausea is a an SE for you, I can say that I had nausea on and off BEFORE Tamox, and the whole thing about taking all these pills and SFBC is enough to make anyone nauseous. You gotta try to measure if this is normal for you or really something. Yes, most people seem to say that the SEs go away after some months. From this thread, a lot of women have been told to stop Tamox before surgeries- but some others are not told anything and just take it right along. one thing you can be sure of, we'll be here to make a joke about it
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wildrose - I was told by my naturapath and my new oncologist (who believes in supplements) that both red clover and black cohosh are no-no's for us ER/PR+ girls. I took black cohosh for years after my ovary was removed (surgical menopause in 1997), and I started taking it again after my lumpectomy, and was told to stop, because it does have some estrogenic properties to it. So does the red clover. I have increased hot flashes now due to the tamox, but my onc told me this week it is a good thing - means the stuff is working. They are uncomfortable, but they DO taper off eventually - those of you going through them for the first time due to our lovely dx, they will get better and be grateful during the winter, you have your own internal heater. Dress in layers, so you can adjust according to the flash level, and have a variety of bed linens so you can do the same at night. I spent many nights flung in front of the freezer when they were bad, and my family would laugh at me.
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Thanks, Rosered, Carollyn, and Mary, for the bra info..I've spent way too much money on bra's that hurt, At work, the men all look at my chest when they talk to me, only now I think they just what to know which one, had the BC. I always want to say THIS ONE, OK!!! And point. Boys. OH Canada and Rosered, WELCOME! Sorry didn't mean to shout.
Hi CA Girls!
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meg! You're back!!! Good to see ya babe
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Bit of good news I saw in today's paper:
http://www.nypost.com/p/news/international/breast_cancer_breakthrough_0tA3PJzRCusIjKb2tKDmmM
Breast-cancer breakthroughAPLast Updated: 10:23 AM, October 8, 2009Posted: 3:53 AM, October 8, 2009
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SHAREVANCOUVER -- For the first time, scientists have decoded all 3 billion letters in the DNA sequence of a metastatic lobular breast cancer tumor, a type that accounts for about 10 percent of all breast cancers, and have found all the mutations that caused the cancer to spread.The landmark Canadian study, to be published today in the science journal Nature, helps unlock the secrets of how cancer begins and spreads.
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