TRIPLE POSITIVE GROUP
Comments
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dance - Thanks for posting the link, look forward to reading the article!!0
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Ashla, thanks for the post about the Affordable Care Act provision, making preventive care for women available as of yesterday. Preventive care can free up a LOT of resources that up to now have been used for addressing much bigger problems after they have really gotten going full steam. The paybacks for everyone now and over time, both in health benefit and productivity, are going to be quite significant.
A.A.
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Yeah Lago it doesn't break it down in that much detail, even in the full article (not that I can find). It does say:
Results of multivariate proportional hazards modeling
indicated that six cycles of therapy was not superior to four cycles for either
RFS or OS after adjusting for the effects of tumor size, number of positive
nodes, hormone receptor status, and menopausal status.That still doesn't answer your question. I noticed 94% were node negative, so it surprises me that they can find significance adjusting for the number of nodes - doesn't sound like there were too many node positive to compare to - ...but I'm no statistician!
Now if they could do a trial for this for HER2+ patients only, we'd really have some great data to go on. It's definitely all a crap shoot, but I am glad that they are starting to do studies like this now so that perhaps some women can be spared the additional SE's that come with rounds 5 and 6.
And I agree with the others - love your new pic!
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So true Lago. We can't look back and so agree, it is very possible chemo was not even needed.
I'm a little confused (what else is new) seeing some of you ladies having your hormone levels checked. My onc said that it is totally unnecessary. Perhaps because I haven't had a period since 2003.
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Arlene I had my last period 2 weeks before chemo. Typically that would mean that someone like me (perimenopausal although periods still regular) would go on Tamoxifen for 2 years. Given my family history of when menopause happens (both mom & sister started at age 51. Sister was just about finished at 53) my onc felts as did I that it wouldn't be coming back. Just in case she had my levels tested for 5 months PFC just to be sure it wasn't coming back. 18 months PFC 22+ months since last period and I'm 51… it's not coming back.
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Again, making decisions based on menopausal status is still very much just a rough guess on the part of medical providers, as they still have lots more homework to do to define it. I admire those doing the study for finally addressing it rather than continuing to just act is if anyone actually can say for any given individual. Using blood levels, or cessation of menstruation, etc. may tell only part of the story. They know menopause happens, but like chemo they can't predict yet who is truly menopausal or when they have achieved full menopause, and it may be that in some instances some may bounce back and forth while becoming fully menopausal.
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AA - As one of the bouncers I agree!0
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AA - makes sense, but I'm guessing in my case since I haven't had a period for over 10 years and when they stopped, they stopped completely and none of the going back and forth, that mine are not coming back. Now, the odd part about me (well one of them,
is that I never had regular periods. I had them tops twice a year and usually only once a year until I got pregnant and after my daughter was born they became much more regular.Studies, studies!!!!
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AA - that's a great article. Some interesting snippets:
In general, three groups of women can safely be considered postmenopausal; all women older than the age of 60, women who underwent a bilateral ovariectomy, and women younger than 60 years not using oral contraceptives or hormone replacement therapy (HRT) with an intact uterus and being amenorrheic for at least one year prior to the diagnosis of breast cancer. Women having regular menses/periods without using oral contraceptives or HRT can be classified as premenopausal. Strictly stated, remaining ovarian activity cannot be excluded for all other women and therefore the menopausal status is then uncertain.
The induction of CIA mainly depends on the age at administration and type of chemotherapy administrated. In general, patients above the age of 40 years have a far greater risk of developing CIA without recovery of ovarian function (77-100%) compared with patients below the age of 40 years (0-40%), irrespective whether alkylating- or anthracycline-containing chemotherapy has been administered [12], [20] and [21]. The wide range in risk for permanent CIA in women older than 40 years mentioned in the literature may relate to variability of age groups, lack of consistent CIA definition and different hormonal treatment strategies used in the various (retrospective) trials. Although occurrence and duration of CIA was not influenced by tamoxifen, use of AIs induced a recovery of ovarian function in 27% compared to historical 0-11% of women older than 40 years [12] and [20].
The article later discusses guidelines for those who are in "iffy" waters - don't have time to read it all now, though.
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Thanks for the recap Dance. According to that, no doubt I'm menopausal - I fit the over 60 category.
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Arlene--They ran a hormone panel on me because I'm only 35 and my gyno wanted to see what was going on. There was obviously a good chance I'd go out of chemopause, I'm just surprised it happened so fast. (5 months after chemo)
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All I can say is the ESD is working. I'm stiff every morning and get stiff again if I sit or stand in one position too long.
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Lago......
Great that you Illinois gals get together. Everyone looks none the worse f or wear.......
Any New York metro area ladies interested in doing the same?
Btw..if any of the rest of you get to NY.....let me know....I'm a little north of what milions of us call" the city".
One subject I'm very surprised that few bc chemopause ladies complain about is sleep problems . I am so used to it since I went through menopause years ago.
No sleep problems ladies? Even after my hotflashes diminished the first time aound, I rarely sleepmore than 5 hours in a row. All my friends are the same. Took me a long time to adjust.0 -
Next time you IL ladies meet, let me know, I'm a half hour north of Milwaukee, so I can make it to Chicago. I was postmenopausal by four years before dx. And, for sleep problems, I only get four hours st a time, I have to get up to pee! And that was before chemo! LOL
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ashla - I haven't slept for the last 11 years, lol! I can't fall asleep, can't stay asleep, can't get comfortable, too hot, too cold, I get thirsty, etc. - I am the Goldilocks of sleep!
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Moon send me a PM with your email and phone #. I'll send you mine.
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Ashla - I'm having horrible sleep issues due to hot flashes. Sleep wasn't great before, but definitely worse now.
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dance - In the 4 vs 6 article they say: Unplanned subset analyses were performed based on tumor ER
and HER2 status. There was no interaction between the number of cycles of therapy and any of these variables, suggesting that no subgroup benefitted from a longer period of therapy.From their table 1 it looks like they would have about 360 HER2+ in the 4 cycle group and the same in the 6 cycle group - it's a fairly decent number to test for an interaction. So my take is that the HER2+ group did just as well with the 4 cycles.
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Omaz: Thanks for analyzing...makes me feel MUCH better!
Sleep: Is that something we should be familiar with.
Occasionally, I'll have a good night but most nights I'm texting friends and family in the west in our wee hours of the morning. Then I fall asleep and get several great hours of sleep. The mind going, going, going is my problem. Hoping this goes away soon.0 -
Omaz - thank you for the analysis!!! That is very helpful indeed!
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SpecialK,
It was the same for me while I was on tamoxifen, and afterward for a couple of years. I feel fortunate that I went through it in Alaska and not in Yuma, Arizona. I was self-employed during that time, so I would just take a few minutes outdoors flapping my clothes to get the most cool air on my skin. Being bald finally was an advantage.
Now that I'm 10 years out from dx and 8 years out from hormonal tx, at age 61 I'm still turning my pillow over and over during the night to get to the cool side of it, and still sticking my feet out of the covers to cool off, which could indicate that I'm still not fully menopausal.
Most people who post are 3 years out or less from dx, so it is hard to know what the reality actually is about symptoms and menopause, or how long it takes to "get there".
A.A.
P.S. I found that melatonin helps with sleep.
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My hot flashes, which are TERRIBLE, are the worst during the day. I have them at night, but not drenching ones like daytime. I don't like noise at night. A ticking clock or dripping faucet can drive me batty. I finally got used to my husband's cpap machine. And I don't like overhead fans blowing on me, and blowing in my face.
BUT, hubby came home with a fan known for its quietness, and a remote and it oscillates so doesn't blow on me completely. It is wonderful. I still have to do covers on and off, but it is a big improvement.
I weaned myself off Pristiq in January as I didn't think it was helping with hot flashes. Then I spent February-April with hot flashes round the clock. So, I started Effexor on the lowest dose. It made a HUGE difference for two months. They have gradually started to be bad again. I probably have a couple an hour. Sometimes they are so bad it can make me feel panicky and nauseated. I carry ice water everywhere.
Onc wants me to bump up to 75. Says it should make a big difference. I hate taking extra pills and really hate that I gave in to Effexor, but it affects my quality of life a lot. I am still carrying the prescription around for the increased dose.
I have a cooling pad that I got at Walmart that is next to me in bed. I try to keep my arm on it, and flip it periodically. And, my pillow has to be cold. Always been that way.
I keep the house at 66 at night and 68 in the daytime. And it as been a hot summer here. I don't care. When my daughter was home, she walked around in a sweatshirt. When my son was here recouping from his acl surgery, he made me get out a down comforter for him. Said he was freezing at night. Lol. Told him too bad. I was comfy and since I was taking care of him, he needed me happy.0 -
fluff - my gyn offered clonidine for the hot flashes. It helped me bit. I have taken it before for blood pressure.0
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I tried that first, Omaz. It didn't do a thing for me. Not noticeably anyway. The Effexor really was a huge difference for two months or so. I thought I had found a miracle drug.
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fluff - I was offered the effexor too but I decided I didn't want to take any more meds so I just flash. I miss the uninterrupted sleep. I was also offfered megace - were you too?0
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He kind of mentioned that as a last resort, but would prefer that I not, since I was pr positive , even though I was only 14% positive.
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Whaduyahthink ladies?
"
Overdiagnosis, or the identification of cancers that would not have become evident in the patient’s lifetime, represents one of the most significant harms of screening. Yet until recently overdiagnosis has gone almost entirely unmentioned in public messages about mammography.
Why the silence? Basically, the proponents of screening have been afraid of providing “mixed messages” that might confuse the public. Sadly, this fear has prevented the kind of full and open discussion that is essential to patient/consumer education.
It was in the mid-1980s that mammography went from being a diagnostic test for patients with symptoms to a screening test for all women. For a century, doctors had been telling women to get treatment for breast cancer as soon as they became aware of it, but now they were told to go further by searching for cancer in the shadows. Increasingly sophisticated technology would be used to find breast cancer in its most embryonic stages.
Overdiagnosis happens when a cancer is identified that either does not progress (possibly even regresses) or develops so slowly that the patient dies of something else before ever developing symptoms. These cancers are sometimes referred to as pseudodisease. The idea that some cancers don’t need to be caught is difficult for many people, even some medical professionals, to grasp. The phenomenon has been observed throughout the history of screening, however, for lung, prostate and breast cancer alike.
Stage Zero
In the breast, ductal carcinoma in situ (stage zero breast cancer) is a particularly problematic condition. In DCIS, the cancer cells are confined to the interior of the milk ducts (the cells’ “in situ” or “original” location). Typically there is no lump or other noticeable symptom, and as long as the tumor remains confined to the milk ducts, it cannot spread beyond the breast. DCIS has a 10-year survival rate of 98 percent.
Healthy women often harbor hidden DCIS lesions. Autopsy studies done on women who died of a variety of causes other than breast cancer suggest that up to 39 percent of women 40 to 70 may unknowingly have DCIS.
Mammography, it turns out, is very good at identifying it."
http://www.bloomberg.com/news/2012-08-02/when-a-mammogram-is-riskier-than-cancer.html
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fluff - I wondered about that too! I was also weakly pr+.
ashla - I think it revolves around individual acceptance of risk. I guess I would rather know that I had DCIS so I could weigh the odds of it becoming IDC against the treatment choices.
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Ashla there was a 40% chance that I didn't need additional treatment after surgery. Hell I wasn't going to take the risk but technically that means 40% chance I was over treated. If I had IDC I would want to know and want it out. Screw over treatment. The risk here could be more aggressive treatment and/or death. Keep the mammos. BTW the mammo didn't find mine when it was only DCIS.0
