TRIPLE POSITIVE GROUP
Comments
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gratitudeforlife, thanks so much for the post about the research results regarding tamoxifen and breast density. I have been saying the same thing for years and years now, and finally there is research supporting my experience and impression about it.
What is so important about the concept is that if it is true, then the women who stay on the drug for 10 years even though it is doing little for them beyond giving them SEs, could perhaps consider a different treatment if the density of their breasts appears to be pretty much unchanged by use of the tamoxifen.
Below is my recent post from Mar 30 in the Hormonal Treatment forum
http://community.breastcancer.org/forum/78/topic/786566?page=1#idx_24
Thread: Is Anyone on a half dose of tamoxifen?
Mar 30, 2013 08:42 AM
Consider my stage/grade in relation to yours... here is my 10 cents.
The lack of more definite information about proper tamoxifen dosage (like any cancer treatment) is a form of success and failure on the part of the medical system. (If those prescribing it don't have to take it, they are happy to have something that works and aren't all that interested in rocking the boat or spending the $ on more precise dosage.)
I did a year of tamoxifen at full dose and then cut back to 15 mg and finally 10 mg, and quit entirely at the end of 1 3/4 years because a question had been raised about it being more risky for a portion of patients diagnosed as HER2 positive. I chose not to switch to an AI.
But I also want to make another observation about my own characteristics that might be helpful in considering your choices. Before taking the tamoxifen I had a post-chemo post-rads mammogram that showed that my breasts were still very dense. At 3 months after starting tamoxifen 10 mg b.i.d. I had another mammogram, and my breasts were extremely the opposite, I presume due to blockage of estrogen by tamoxifen. I have never been tested to know whether I am a "tamoxifen-responder" or not, but my guess is that I likely may have been especially responsive. (When density is lost, the breasts also unfortunately sag more, because the estrogen is what keeps them perky.) My mammograms have been clear ever since that mammogram done 3 months after starting the drug.
So, possibly one might use continued mammogram clarity as one way to help with making a decision about it. To me, it is one of the objective pieces of information that ends up being ignored because no one ever noticed the correlation.
I think often about how many women are dealing with medication SE's and can't help wishing that more providers had to deal personally with the SE's instead of just keeping the medications rolling.
A.A.
P.S. It also may be evidence that others who happen to have a strong response to tamoxifen may not get ANY additional benefit by taking it long-term.
Dx
12/3/2001 at age 51, IDC, 1.6 cm, Stage I, Grade 3, 0/1 nodes, ER 95%, PR+, HER2+++; CAFx6 (refused blood boosters), IMRT rads, tamoxifen x 1 3/4 yrs; no trastuzumab, no taxane, no aromatase inhibitor, no evidence of recurrence; primarily vegetarian organic diet, 1 hr exercise/day, vitamin D supplementation, melatonin 1-3 mg h.s., low-dose metformin (no diabetes)
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Rhonda, I did the cold caps as well, and I thought it was totally worth it. Esp. now that I’m done – don’t have to wait for my hair to grow back, it’s still here! I am very grateful for Kaiser as well. I like that everything is coordinated so I don’t have to worry about getting medical records from here to there or dealing with billing disputes. Cons are took them waaay too long to get me in for surgery.
Pbrain, how is rads going with you? Hope you are breezing through it, you really went through the wringer with chemo. Trust me, you’ll be thrilled to be done with rads. You still will get to play cancer patient every three weeks for awhile when you go in for your herceptin, won’t you?
Gratitude, really interesting study. Alaska, really interesting post on the same subject. I’m curious – how long should it take to produce that effect? I started tamox at the end of January and in early april I had that whole mri, ultrasound, breast biopsy extravaganza redux. No cancer, thankfully, but breasts were still quite dense. Of course that is just a hair over two months on the stuff so might be too early to see.
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Does anyone remember any good boards relating to husbands not coping very well? Please suggest if possible...tx
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Off hand I don't know since I've been alone---but al this time there are a lot of husbands who don't cope well for different reasons. but the maon reason is a lot of men cant stand having their wife sick--oh maybe a cold, but this is a whole different story--they tend to close down or get angry easier-maybe cuz they are just in fear themselves and take it very hard and feel distant/ I've heard other women say they would sit down with their husbands and really talk and with the Dr. too, some have even gone to counseling for help. I guess it depends how bad it is for u. Most men have a lot of problems showing emotions so they just plain don't know what to do cuz in their heads they are the fixers of problems and they're helpless on this one. When really all u need is support mostly emotional. Someone will know that's comes on or u might find it u'rself on the boards--Good Luck with that Dana, it's easier when u'r husband is all on board with all of this crap.
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Well said camille. I have read much the same on other boards. My DH is great with doing the laundry, cleaning, being at appts, but not so good in the emotional support area and really doesn't want to talk about any of it. That is why I, and so many, many others are so grateful for the women on these boards.
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Dana - is he unsupportive, or not coping well emotionally himself? I have seen this book recommended:
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I have one of those husbands: eyes glaze over when I talk about chemo, etc; will NOT look at the surgery site; thinks he knows more than the doctors. Does a lot around the house, but like yours, Bren, not so good with the emotional support. Thank goodness for a wonderful BFF, other women on the boards who've been there, and for me--strangely enough--three very supportive and huggable adult sons. I think they feel like they've got to step in for Dad, who is a bit AWOL emotionally these days. Youngest is still at home and has been a lifesaver! I get my first use of the powerport today with a CAT scan. Got my Emla ready and steeling up my courage. Oh, I had my chemo class yesterday. Good helpful info and lots of hugs and encouragement from the staff.
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Dana: My hubby was very supportive but I found out, not soon enough, to try very hard not to discuss things with him...he was there every step of the way. This blog is a salvation for many of us. It is harder emotionally for family than for us.
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Bren58, good luck with your latest Herceptin session today, and I will be saying prayers of support for you tomorrow as you have your ALND surgery.
Pbrain, so very, very sorry to read that you have radiation burns and are quite fatigued. Dear girl, you are halfway through radiation, so just keep on a truckin'--what else can one do??
AlaskaAngel, I, too, was quite excited by the article re: mammograms may be useful in monitoring who is responding to Tamoxifen versus who is not. I had a mammogram done last week, 13 months since the first one done in March 2012 to diagnose the malignancy. I next see my BS in June 2013, and I see my MO in early July. I will present the article to both of them and ask them to call up the images from March 2012 and April 2013 to compare density changes, if any are detectable (I began taking Tamoxifen on Feb., 14, 2013). I totally agree with you that I see no point in taking a drug with serious SEs if it is providing little to no benefit. My MO, a male, is very smart yet very statistically driven, so when I was explaining how sad I was about having to take Tamoxifen, he replied, curtly, "Well, you should be glad the drug exists. It is proven to save lives." My response was, "Doctor, how would you like to take a drug that selectively blocks the absorption of testosterone for five years and is a known carcinogen?" He was very quiet, looked at me, and said, "You are right. It is a big deal."
TonLee, how goes the renovation? Think of you often as having lived through a five-month reno, let's just say it was no cakewalk in the park, and by the end of it I almost tossed my DH to the curb
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You have all basically described my DH in your "combined" posts....my usual hubby is this sweet, gentle man....he just seems terrified...doesnt like to talk about "it" seems to hide in the garage until completely exhausted...then to bed...I kinda get that he is not sure how to help, but when I try and talk to him...it usually ends with him repeating..."everything is gonna be ok". He seems to get frustrated and angry quickly and I find myself tip-toeing around him which is quite unusual for me. My friend and massotherapist (for ruptured discs in my spine) got him that book SpecialK....he has not picked it up yet. I TRULY appreciate EVERYONE's knowledge and support here....thank you for listening...very grateful ♥♡♥♡
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Bren58.....good luck with your surgery tomorrow....sending lots of love and happy thoughts!
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DanaM my husband was fantastic but I could tell he was scared. We sometimes forget. I gradually let him know about things. I think it took a long time for him to even realize that the risk doesn't disappear after treatment is done, 2, 3 or 5 years out. Actually I think he finally understood that this winter when 2 of my friends recurred at the 2 year mark. One that neither of us though would.
Let him know you he is scared. Tell him you really need him to express his feeling and fears to you because you are feeling left out. You want to go through this together. You want to support him as much as he's supporting you. Then tell him you know you have an excellent prognosis but still have to be diligent and keep up with what's going on.
Or just ignore all that because I'm not a shrink or a social worker and have no idea if I'm actually giving you good advice.
Good luck Bren!
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Lol Lago......I think all suggestions/advice have merit.....I guess its only been a month since my adventure began.....sooner or later I will figure my DH out and hopefully the journey will be TOGETHER! I put out the Book on our bed...maybe he will get the hint....lol
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DanaM,
My DH reads hugely, but reading books anyone gives him goes nowhere... I hope your ploy works, though! I don't have much for suggestions because my DH was quietly supportive throughout, and a major regret for me about doing toxic treatment was my complete loss of gender because the "giving back" through that particular route is no longer possible for us.
Gratitudeforlife,
My guess is that many who get no benefit actually will tend to continue the drug anyway because it is easier to pretend it is working for them than to understand that it might only be providing a false sense of security.
One reason why that is a particularly poor strategy is that for the greatest likelihood for successful treatment, one has to be genuinely fully menopausal. Becoming fully menopausal causes a slowdown in metabolism that then contributes to weight gain and the loss of testosterone contributes to reduced muscle mass and greater fat gain. It is one reason why middle-aged and older women, with or without breast cancer, tend to develop fatty liver. Fatty liver can, on its own, gradually increase to terminal liver conditions. In addition, one of the risks involved in taking tamoxifen is that it is very hard on the liver. So one stands increased likelihood of liver disease due to tamoxifen. If one is not getting any benefit from taking the tamoxifen yet continues to take it in the hope that they are, there is also the problem of ending up with terminal liver disease.
There is the information for us about less recurrence on tamoxifen for 5 years (which is relatively short-term, and usually with slow progression in becoming more and more menopausal, resulting in slower development of any liver problems) but with a longer course of tamoxifen being taken by women who are more and more menopausal beyond 5 years, logic tells me that more of them are likely to develop fatty liver and more would develop terminal disease.
So finding a way such as continuing density on mammograms could at least help people stop depending upon false security with tamoxifen, particularly if it includes being at higher risk for liver disease.
P.S. One reason it is important too is the documentation showing that somewhere between 1/4 and 1/3 of HER2 positives who were taking tamoxifen did worse on the tamoxifen, and those who had a high AIB1 level were shown to be more likely to recur. If researchers could somehow use the density plus the AIB1 level to measure everyone on tamoxifen sometime during the first 6 months of tamoxifen, they might be able to separate out those who aren't benefitting from the tamoxifen.
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DanaM have the talk. The book trap isn't the best way to communicate. Women believe we give such clear messages but men are wired so differently. That's why you have to talk. Your DH might see the books and say "Honey I found your book."
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Lol lago. Yep we are definitely wired different.
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AlaskaAngel, thanks so very, very much for informing me about the existence of the protein, AIB1. It has left me doing a lot of reading today about it. I am attaching an article, "Role of Estrogen Receptor Coactivator AIB1 and HER-2/neu in Tamoxifen Resistance in BC." One portion of the article reads as follows:
Our data suggest that only those tumors with high levels of HER-2 expression that also express high levels of AIB1, a downstream target of this kinase signaling pathway, are relatively resistant to tamoxifen treatment. The inconsistent results in prior studies (23,24), in which only HER-2 was measured in tamoxifen-treated patients, could be due in part to the failure of these studies to include consideration of AIB1, which may also be necessary to elicit the agonist activity of tamoxifen, and in part to the lack of assay standardization for the measurement of HER-2. It is also clinically important to emphasize that, in our study, patients with tumors that had high HER-2 expression alone, without high levels of AIB1, responded to adjuvant tamoxifen treatment just as well as patients with tumors that had low HER-2 expression.
Of course, it is CRTICALLY important for the entire article to be read so that one is familiar with the classification of groups that were studied and findings that resulted from the study. I thought it would interest you. As for me, I am calling my MO tomorrow, PRONTO, and asking to have the AIB1 levels in my excised tumour determined so that I can make a better informed choice about whether or not to stick with Tamoxifen for five years (or more. . . or less
). Here is the article, in its entirety:
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My husband was very supportive throughout, though he never let on how scared he was until 1.5 years post. He recently admitted to me, "You know I don't really know if there is a God, but I used to pray every day that you would just live." I was pretty blown away by that. It really was a very out of character statement for him to make.
Definitely have a talk and like Lago said let him know you know he's scared. I would also tell him you know he feels helpless, but the best way to help you is to just listen, hug you, and love you. That gives him something concrete that he knows he can do, rather than feeling like he has to "fix" something he has no control over.
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dancetrancer exactly! Well said
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Tears...but awesome advice.......I'll try new "talking" approach tonight!
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Danam,
My husband was not supportive at the beginning ...he was never home on the weekends when I was the sickest..he would just cry all the time even when I had my MX he cried because it took two hrs longer than it was suppose to..I think he's in denial about the chances of reoccurrence he always says your fine..but now I can say he has gotten better..0 -
gratitudeforlife,
The Osborne study of 2003 is the one that I took to my PCP to question whether to continue tamoxifen as a HER2 positive patient. I was dx'd in 2002. My PCP called my Seattle onc from Alaska and talked it over with my onc. Neither of them had the courtesy to intelligently discuss the Osborne study or the recommendations from the onc with me. Their only response was to tell me to start taking an AI instead, "since I was likely postmenopausal" after being on the tamoxifen. I declined to do so.
I don't know if you saw my post(s) done April 17th but I also posted a very recent study about this issue in that post, and would appreciate any feedback about that particular post that you might have for me.
" I wonder if the study involving 6,000 women is again generalizing about the recommendation for continuing use of tamoxifen for 10 years, and what the story is when it comes to the subgroup of HER2 positives in terms of AIB1? (There is no patient-available test for AIB1.)"
Edited to add 2012 study:
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For measuring the AIB1 level, the studies use several methods and I don't know whether they are only commonly used for studies at this time or whether they would be available easily by patient request (or alternatively, difficult to obtain by patient request).
In the note below, the reference "BC" happens to refer to bladder cancer testing in the study I drew it from, not breast cancer testing, but the testing wouldn't be limited to bladder cancer.
"Methods:AIB1 expression was measured by immunohistochemistry in non-muscle-invasive BC tissue and adjacent normal bladder tissue. In addition, the tumorigenicity of AIB1 was assessed with in vitro and in vivo functional assays."
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AlaskaAngel, I just read your April 17 article post, and then I read the recent info., released,
http://www.sciencedaily.com/releases/2013/03/130320115008.htm stating that it is beneficial to take Tamoxifen for 10 rather than five years. In that study, however, this info., is emphasized:
In conclusion, for women who remain premenopausal at the end of 5 years of adjuvant endocrine therapy, consideration of prolonged use of tamoxifen is now recommended.
So, I assume this means that postmenopausal women are not being directed to engage in prolonged hormone therapy??? Or, are they?? Very confusing times for all of us, in my opinion, and this is why I am a voracious reader of info., on several sites because, quite frankly, I think the MOs, ROs, BSs, etc., although they are doing the best they can and have made great strides, are also learning as they go, daily or monthly.
After reading your article, these are things I took away from it:
(1) AIB1 seems to influence the progress of cancer cells in both hormone dependent and independent breast cancers;
(2) Overexpression of AIB1 correlates with tumour recurrences;
(3) Not all ERa-positive BCs are associated with higher levels of AIB1mRNA (the 'm' represents mitochondrial RNA, and mitochondria are the powerhouses of cells. mRNA and mDNA are passed on, genetically, from the mother only to her offspring--) as ERa-negative BCs also have been found to have high levels of AIB1mRNA.
As usual, only parts of the puzzle are solved, at this point, yet I think it is critically important that we educate ourselves and question our treatment specialists so that we get the best outcomes possible.
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I like to read and research too...since I'm new can anyone suggest other sites, etc that may be informative?
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AIB1
A new one for me!
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gratitudeforlife I don't think that's what it means. The typical course is if one is no longer menopausal they would switch to an AI. My NP warned me at my last visit a couple of weeks ago that those of us on AI would also be looking at 10 years. Studies are point to it. So I'm sure it means those women on 5 years of tamox that are in menopause will switch to AI.
I personally don't care for how the scientificdaily articles are written. The can be misleading and/or leave some information out.
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Gratitude,
Thanks for asking...we're done! Well except for small touchup stuff I have to take care of....a few more trim pieces, another coat of paint and I'm calling it OVER.
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AA and Gratitude,
I also had reservations about Tamoxifen. Since there is no reliable test to determine if it is indeed working. This led me to have the Ooph. I couldn't "risk" the chance Tamox wasn't working.
But when they put me on an AI, the SE were so bad I couldn't function. Literally bent over to unload the dishwasher and couldn't walk straight for 2 weeks! Plus I don't like how AIs hurt the bones.
So I am back on Tamoxifen and fall into the group AA described as not sure if it's working, but hope it is. But I also think women with nodal involvement have to err on the side of "probably" more often than women who don't have nodal involvement. I say this because had none of my nodes been positive, I would have forgone the Tamox, and likely the Ooph as well. AT least that is what I think...but since I wasn't a lower stage I'll never know.
At this point my SE from Tamox are minimal. However, if there is a way to determine definitively that it is/isn't working, I would love to make that determination. Would in fact pay out of pocket for it.
So please, please, keep the information coming! Let us know what you find out.
I'm still waiting, AA, for my Endos office to call about the Testosterone cream. You may have said, but does it help with muscle, the dose you're taking? Can you tell?
Thanks!
t
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I just love you guys!! I'm going to keep trucking, but all I want to do is sleep, especially when I lay down in the custom made mold in the dark and peaceful radiation suite. ;-)
I agree with Arlene, I do think this is harder for our families than ourselves. We come here, get educated, talk it out--that helps way more than we realize. I'm single, but I know this diagnosis has been really hard for my mom. Like your hubby Dana, she keeps saying to me "everything will be alright" but I hear she cries herself to sleep at night. She lost my father 2 years ago, so this doesn't help.
Meanwhile, I've only cried once, right after diagnosis. After that, I got up and started doing what they were telling me to do. I kind of think of myself as that Barbie head we all had as a kid where you could style her hair. I just kind of sat in that chemo chair and let them dump things in me while I watched streaming Netflix on my Ipad.
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