TRIPLE POSITIVE GROUP
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I've only been on the Arimidex for 3 months and you know, I don't think anyone has tested my hormone levels. Guess I need to ask about that.
Really interesting theory!
I think I mentioned that they have stopped my Herceptin again because my EF dropped to 50 from 60, three months ago. Seems though that the year on Heceptin is just a timeframe they made up with no testing or scientific data. Hmmm.
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ArleneA - I asked about hormone levels yesterday. MO said they would go on faith that Femara was working for me. Pretty much like they go on faith that chemo will work, even though it doesn't work for everyone, and they don't check that unless you are receiving it before surgery. I had a total hyst 10 years ago so I don't think I make much estrogen anyway. I have been on Femara since August.
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SpecialK: This confuses me but a lot does. If you had a hysterectomy years ago which lowered your hormone levels, how can you be ER/PR positive? I asked the new onco yesterday how it is that I was lucky to have 2 periods a year my whole life which would indicate to me that I wasn't producing hormones but yet I'm ER/PR positive. He had no response.
What am I not figuring into all of this?
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ArleneA- my tumor had estrogen receptors on it but I am not sure that correleates to how much estrogen I had in my body. Estrogen is produced in a number of locations/glands throughout the body - not just the ovaries. Also, because I was only 45 when I became surgically menopausal it was recommended that I take estradiol (estrogen) to protect heart/bones, so I did have estrogen floating around. I don't think it was much though, as I took a minimal dose (I halved the tablets), and still had many hot flashes a day. I stopped taking it the day I was diagnosed and I have fewer hot flashes now.
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Did anybody read about the zometa studies in the news today. Is that what started your conversation( specialK and Arlene) re; estrogen and progesterone. I too am 6 years status post hysterectomy and initially was confused where all these hormones were coming from without having any major hormone producing organs until my oncologist explained other organs that produce estrogen and progesterone and the estrogen/progesterone receptors on the tumor itself. Wow the amount of knowledge you need to make sure your care is appropriate is overwhelming. As sick as it sounds we need to start a " all you need to know about _________(fill-in-the-blank)cancer school." Thank you for sharing your experiences and knowledge of this disease.
Back to my original question.. Anybody have any info on Zometa? Is that also r/t the Prolia I've seen mentioned here today? Trying to stay informed prior to seeing MO on Monday.0 -
Also any hints on getting an Avatar.. I keep getting a message something to the effect " not from an appropriate file??" I swear it's not porn... lol. I have tried for 2 days to post an avatar and guess I'm too computer illiterate. I'll see if my DH will try tonight.
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*edited to try to make the link hot, still can't figure it out- sorry!*
Lago, Special K- and everybody...
the news out of San Antonio is pretty compelling...
- Zoledronic acid and endocrine treatment improved survivorship in early-stage, premenopausal ER-positive breast cancer.
- Risk for recurrence decreased by 28 percent, and risk for death decreased by 36 percent.
- No patients have experienced osteonecrosis of the jaw or renal failure.
It says "patients are experiencing drastically fewer recurrences"
Here's the link:
http://www.aacr.org/home/public--media/aacr-press-releases.aspx?d=2626
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d-too - yes, I was referring to the Zometa announcement from San Antonio, and also timely since I was discussing the Prolia thing with my MO yesterday. Still not sure what to do about that - have to do more research. You are correct, you will have a PhD in BC by the time you are through treatment. At the very least you will be a walking encyclopedia of SE's and what to do for them!
To get an avatar pic I just browsed a picture that was on my hard drive in my picture file. I know it is a pain to post pics to a thread - those have to come from an outside saved source like picasa or shutterfly, etc.
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Very interesting discussion and I just read the article below on the subject. I've been disturbed but not surprised when I read about "dormant micrometases" in many articles-it certainly explains how we can end up with mets when we seemingly have early stage BC. Anyway, there is a lot of research being done to figure out how to prevent the activation of mets from ever happening. Zoledronic acid sounds very promising for many of us. I agree with many others have said too-I'm finding myself feeling much more anxious these days because my active treatment will soon be ending. I feel like I'm entering the "wait and hope" phase with all of its uncertainty. There is just no end to this.
Zoledronic Acid's Breast Cancer Benefit Extends 7 Years
By: DIANA MAHONEY, Oncology Report Digital Network
SAN ANTONIO – Adding zoledronic acid to adjuvant endocrine therapy significantly improves disease-free and overall survival in premenopausal women with endocrine-receptor–positive early breast cancer at 7 years’ follow-up, Dr. Michael Gnant reported today at the San Antonio Breast Cancer Symposium. Women in the ABCSG (Austrian Breast and Colorectal Cancer Study Group)-12 trial randomized to receive zoledronic acid in addition to ovarian function suppression and endocrine therapy had a 28% reduction in risk of recurrence and 37% reduction in mortality risk at 84 months, compared with women randomized to adjuvant endocrine therapy alone, according to Dr. Gnant, professor of surgery at the Medical University of Vienna.
Dr. Michael Gnant_The findings confirm data previously reported by the ABCSG-12 investigators demonstrating disease-free and overall survival benefits associated with the treatment regimen at 48 and 62 months of follow up (Lancet Oncol. 2011;12:631-41). "The continued success of this treatment means we can intervene early and still observe persistence of the benefit of treatment," said Dr. Gnant, president of the ABSCG. The four-arm open-label trial randomly assigned 1,803 women to ovarian suppression and endocrine therapy plus or minus zoledronic acid for 3 years. Investigators used log-rank tests and Cox models to evaluate disease-free survival and overall survival, Dr. Gnant explained. All of the patients, mean age 44.5 years, were premenopausal and had undergone surgery for stage I or II hormone receptor–positive breast cancer. They were treated for 3 years with 3.6 mg subcutaneous goserelin every 28 days, and randomized to 20 mg of oral tamoxifen daily plus placebo, 1 mg of oral anastrozole daily plus placebo, or either of the latter with 4 mg intravenous zoledronic acid every 6 months. At a median 84 months’ follow-up, the hazard ratios for breast cancer recurrence and death, respectively, for women receiving adjuvant zoledronic acid were .72 and .63, Dr. Gnant reported, noting that the reductions remained significant in univariate and multivariate analyses. Further, in multivariate analysis, "there was no interaction between zoledronic acid and tumor parameters or endocrine therapy," he said. "The hazard ratios were identical for small and large tumors, node-positive and node-negative tumors, and for patients receiving anastrozole and tamoxifen." There was a strong interaction between zoledronic acid and age in terms of survival benefit, however, with patients older than 40 years experiencing a 34% reduction in recurrence risk and a 44% reduction in mortality, according to Dr. Gnant. No similarly significant survival benefits were observed among patients younger than 40 years, he said. As expected, patients receiving zoledronic acid experienced more arthralgia, Dr. Gnant stated, "but, importantly, there were no cases of osteonecrosis of the jaw and no renal failure in the treatment population." The findings, which are consistent with those seen in the postmenopausal cohort of the AZURE trial, "suggest that estrogen deprivation and reduction of bone turnover-derived growth factors in the bone marrow microenvironment are needed to sufficiently suppress dormant micrometastases," Dr. Gnant explained. Together with the known bone-protective benefits of zoledronic acid, the new data provide sufficient support for adding the bisphosphonate to adjuvant endocrine therapy in premenopausal women with early endocrine-receptor–positive breast cancer, he said. Dr. James N. Ingle of the Mayo Clinic in Rochester, Minn., the discussant for the session, concluded that the ABCSG-12 findings provide level-one evidence for the value of adding zoledronic acid to goserelin and tamoxifen or anastrozole in this patient population. "Zoledronic acid as standard of care [in these patients] will be more widely accepted when the results of the ongoing SOFT [Suppression of Ovarian Function trial] are reported," which will clarify the value of tamoxifen vs. exemestane (Aromasin) in conjunction with ovarian suppression, he said. Dr. Gnant and Dr. Ingle reported having no relevant financial disclosures.0 -
d-too - I also had a problem posting a picture. I'm not sure why, but if I save a picture from something I already have on facebook and then post it as my avatar, it works. If I just take a picture I have saved from my hard drive, it doesn't. The only thing different I can find is that the ones I pulled off facebook are saved at a lower dpi.0
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Nora you have every reason to be upset. My onc is just the opposite. She doesn't do routine tests or scans but if there is a symptom you better believe she will start scanning or send you to the specialist.
Of course I'm the opposite extreme. I just assume it's something else. I need to be a bit more paraniod or I could get myself in trouble. But it seems if you have a symptom for more than 2-4 weeks then it should be checked out. Any rashes as seem to send my onc in a tizzy.
Arlene the reason why I had my hormone levels tested for several month was because I was put on Anastrozole but peri menopausal prior to chemo (was still getting periods every month on time). Given my age and family history my onc felt no way is it coming back but wanted to be sure.
Lady_Madonna they said just the opposite at the conference last year and that's why my onc decided not to put me on Zometa. But now I'm off treatment and I doubt my onc is thinking about me these days. So confusing. I think my onc is more worried about my liver. I'm supposed to get another scan in February. Had one last year.
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Thanks Lago. Hey for those who still have your ports and finished treatment, how often do you get it flushed? Monday would have been my Herceptin but since I'm on hold for Herceptin until they figure out this heart thing, how often should I get it flushed?
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Port flush very 3 months.
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Thanks SpecialK. I appreciate you taking the time to type that up for me
Here's hoping your next scan is rock steady.
Nora, my Onc is the exact same way. I don't know if he has women who cry, or have hysterics, but I've never been one of them. And yet I get treated like a hypochondriac. Though now that I'm officially done he's warming up to me...hahahhaha.
I've felt puny the last week or so, mild spotting last week, but it went away. I also have a rib that hurts non-stop. My Onc said it was probably just my stomach. Or I hurt it working out....but it hurts every day and has for about 2 months. I guess when it gets bad enough I'll go to the ER and then they'll have to do something.
Also, I think the reason I feel puny is because I started my period today. It's not just back...it's back with a vengeance. As if a year of freedom is gonna cost me extra now. Hope I don't bleed out....it's that bad. I know TMI...but dang! My OBOnc said I wouldn't have any more periods! That even if I spotted to come see her asap.
Liar liar pants on fire!
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Oh I was told the same......I wouldnt have a period. I told her I'd believe it when I see it and think one day I will have it come back, I'm skeptical. They did do the testing though and they said I was in menopause. I just have a hard time believing it. My sister still has her period and is 3 years older than me. My mom had hers till she was in her mid 50's. I am still in my 40's.
I hope you get yours sorted soon, TonLee. What would they do at this point? Do they put you on something stronger or do a hysterectomy? I know that us triple pos women arent supposed to have a period though.
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Geez TonLee, sorry you're feeling that way. Hope it gets better. It seems my onc is guessing differently that he others. She says I will likely get a period back. I think she's crazy. I'll be 49 in a couple of months.
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OMG TonLee: Hope it gets better soon! Take care!!!
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Triple positives shouldn't have a period? Hmm...
I didn't even stop having a period during chemo. I skiped a couple months, but I certainly didn't go into menopause. Actually, the reproductive oncologist told me that while on Tamoxifen, she hopes I have a period. Shedding the lining prevents a build up that could lead to endometrial cancer.
I'm more regular now that I have ever been in my life! I've had PCOS since I was 17 and there is no sign of it now.0 -
That's what I was told anyway! They want me to call if I get my period and they dont want me to have a period.
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I think the non-period is the women who haven't gone through menopause yet. Me thinks!! It was never mentioned to me since I've already been through menopause....guess if I have a period, I need to worry???
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So now I don't know what to do about Zometa. Do I call my onc and ask "are we going to do it now?" I mean it's almost a year PFC (Jan. 19) and last herceptin was Sept 6th. I'm sure I'm off her radar. Not even sure if they could even consider it now. I think once you are through with treatment and NED for a year you're on your own unless something new comes up.
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lago - My med onc has me coming in every 3 months for blood work and a physical exam.0
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I think I can lead the list of recurrence worry. It is ridiculous.
I started chemo/herceptin when I was still having pretty regular periods. They stopped at mastectomy and I havent had one since. I just saw my PCP who ordered a full blood workup, including a hormone panel. I had it done when I went for herceptin and it took them 8 tubes for all the tests. Lol. At any rate, my hormones are shut down. I am going to ask the onc about switchingto arimidex although i have been toleratig tamoxifen really well finally. Short of hot flashes, joint pain has gone away. I do worry about the blood clot issue, but I guess if I move over to arimidex, I'll just switch to worrying about bone loss.
I am taking metformin on my own and not running it through insurance since it is so cheap. I am keeping records and am going to co duct my own personal study, since I got kicked out of the other one.0 -
fluff - How do you get the metformin on your own?0
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Omaz my onc doesn't do tumor makers. Once I stopped getting blood draws for the Esterial tests that was it. My PCP ordered 1 more when I got that rash in August.The doctors get a bit more freaked when we get rashed now although he (and I agreeded) didn't feel this rash was anything to worry about… and we were right.
My first year I would see someone every 3 months (onc or breast surgeon) once chemo was done but the year was the year from BMX not from ending chemo. Now I'm on the 6 months schedule switching off with onc (or NP) and BS. I had another bone density in September. Not sure if they will do another one. I'm supposed to have another liver scan in February (because they initially saw some stuff that so far they believe is benign cysts). I have a feelilng this will be my last liver scan if everything remains the same.
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I'm confused about the Zometa too. I see my onc every 3 months and that was 3 weeks ago - so I won't see her until Feb. I kind of feel like calling to ask her if she should write me a prescription now.
Re: periods, I was 43 at diagnosis and my onc did not want me to get my period back - it was likely I would. That was part of why I had the hysterctomy last year.
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omaz-I worked my pcp over and talked him into it. Showed him all the stuff on the study. I am not running it through insurance or anything. It is free at the local grocery store, I just learned, but I picked it up at Walmart for the first one. I think I could probably have talked my oncologist into it also, I just happened to be at the pcp's office that day.
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Sara I might email my oncs NP. I need to get a referal for that liver scan anyway. I'll wait till January. I assume my onc and her NPs are very busy right since I bet she will be just returning on Monday.0
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Lago: That is weird about your liver because I was reading my report a few nights ago and it showed some tiny things on my liver that they all said was probably cysts but no one has ever mentioned it. Needless to say, I've pulled that sheet out for review next visit. My new onc follows you every 3 months while on Arimidex.
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What does the Metformin do? Isn't that a diabetic drug?
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