If not a cure...why not a controller?

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited October 2009

    I would be over the moon if my daughter dodn't have to worry about this s**t. Really.

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  • Husband11
    Husband11 Member Posts: 2,264
    edited October 2009

    The progress is just too slow.  I think that some of the unproven, speculative supplements or treatments like zometa, melatonin, supplementing to attain healthy vitamin d levels,  maitake d extract, iodine and tocotrienols are all worth trying.  Some of these are currently in clinical trial for BC patients, and some have proven worthwhile in other countries, but are currently under study in North America.  I think if you feel the risk of recurrance is too much, you have to be a little speculative so long as it doesn't increase your risks.  Today's treatments were someone's hunch at some point in time.

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  • lexislove
    lexislove Member Posts: 2,645
    edited October 2009

    Im teriffied for my daughter...more so than myself having a recurrence. I tested negative for the BRACA genes, but i did the testing for my daughter when she gets of age. I personally believe my BC diagnosis was just bad luck. I fell in that 1 in 2500 woman 30 and under to be diagnosed. Wish I won the lottery instead ...but what can you do.

    I hope and pray that there is a BC preventative vaccine. My genetic councellor recommends my daughter getting breast exams at around 20 yrs of age....its waaaay to young to have that worry.<sigh>

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  • cubsfan
    cubsfan Member Posts: 49
    edited October 2009

    I too agree with lexislove.....I am terrified for my THREE daughters and grandaughter.  My sister was diagnosed twice (15 and 17 year survivor er-pr-) and now me  I am BRCA - but all my doctors told me that there is obviously something in my family it just has not been identified.  (My grandmother died of BC and cousin also is a survivor.)  I do remember in ALL my reading about BC that I read "The bad news is you have breast cancer, the good news is you have breast cancer)  So much is being done for reasearch as compared to other cancers.....survival for lung cancer has not changed significantly is 20 years.  I was at my BS today and he informed me that there are options today that weren't around years ago and so much promise out in the horizon.  I hope and pray we are all here to see these "promises"  I pray for this for all but I do not want my daughters to live with this dreaded disease.

    Have a nice weekend ladies.

    Nancy

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited October 2009

    Well, you can rule out melatonin as a possible cure/preventative. I took it for years prior to my diagnosis. Obviously, it's not Holy Grail.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited October 2009

    I was reading something too about Vit D, that BC may cause your Vit D levels to drop, rather than the other way round. I still take 2000iu's a day though Smile And I eat mushrooms and walnuts every day, and drink my Green tea - you never know, right!

    There are so many factors that come into play here. And dietary influences are so hard to do concrete trials on. I just do what I can without being ridiculous, am willing to risk Zometa for eg, as it is a "known" drug already, with known SE's - I'd pretty much try anything really.

    Yep, me too, terrified for my daughter. I would so hate this to happen to her. No one else anywhere in my family has ever got BC, but they have all died of Cancer (in their 80's most of them) But it makes you wonder if some peoples bodies are predisposed to making cancer, and there is some genetic marker for that, that will one day be unravelled...

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  • JudyO
    JudyO Member Posts: 225
    edited October 2009

    Don't have daughters...have sons...but know it can hit them too. I am sure there is another genetic link other than Braca 1/2. My grandmothers both died in their 50s of some cancer...my Dad had 2 sisters...one died in her 50s of breast cancer....now me...in my 50s and the oldest of many cousins to be entering this age. My onc said no genetic testing due to age but I think they will find some generic factor that hits the older folks.

    KerryMac...Just convinced my onc to check my vitamin D level. He wasn't up on the research...wonder sometimes why not....the poor girls that don't do their own research or don't get aggressive...

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited October 2009

    I had no genetic testing due to age too - and I was 42 at Dx! My onc only told me to take 400iu's of Vit D, and only so the calcium is more effective. She doesn't believe in anything dietary at all. It doesn't bother me, I don't do anything radical, just use good common sense.

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  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Hi Kerry

    Do you also take calcium? I asked my Onc about vitamin D and he was a bit like, well whatever. In any case he told me to take 1000 IU of Vit D but not to take calcium. I wonder why not? Maybe he is worried that patients take too much of everything?

    Hope you are doing well!

    -Helena

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  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Hi Judy,

    Just wanted to check in and say hi. Hope you are doing OK. Regarding the genetics, yes I think they find new mutations all the time. I would think that testing for these gets better and better, so maybe in 10 years from now they have better and fasting screening methods.

    I agree with you 100% that they should find something quick that controls spread and does so effectively. Not this 'well maybe it adds another month or 2.' So many of us are affected, not to mention our families. I also think that better treatments are coming but they should figure out a faster way to study new options. You can't keep taking 8 to 10 years to put yet another slightly different version of an aromatase inhibitor on the market.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited October 2009
    Helena - hey, good to hear from you. Hope you are doing well! I take 1250mg calcium, twice a day (so 2500 daily) with 1000iu's of Vit D. I was told to by my Onc when I started Arimidex, and also by the Norvatis nurse when I got my Zometa. It is funny your Onc doesn't recommend it. What are other people told??
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  • helena67
    helena67 Member Posts: 357
    edited October 2009

    I always thought too that Vitamin D and calcium go together. And given that we already are at increased risk for osteoporosis. On the other hand, I am an avid milk drinker (low fat or skim!!!)

    I have another appointment towards the end of November so I will ask about it again then, because I forgot to ask for an explanation last time. I think they are caught a bit off guard when their patients ask for things that are not standard yet in their book.

    Yes I am doing OK! I started working again a few months ago. I was so incredibly forgetful then. You should have seen me, leaving post-it notes on my desk everywhere!! That is better now.

    The big conference on breast cancer in San Antonio is coming up soon - so then we should see some more data and presentations on vitamin D, etc. I also read somewhere yesterday that there is an ongoing study called FACE, that compares Femara and Arimidex and that the first data might be presented in 2010. So that will be very interesting!

    Take care,

    Helena. 

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  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Oh, Kerry,

    By the way, what vitamin D do you take: it says on my jar: cholecalciferol (vitamin D3)?

    -Helena

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited October 2009

    Hi again Helena - great to hear you are doing well. Good for you for getting back to work. I have started volunteering two afternoons a week in my sons kindergarten class, and I am enjoying feeling "back in the world" a bit! 

    I will remember to ask my Onc about the FACE study, I know there is another study underway at the moment regarding continuing AI's longer than 5 years. She seems to be of the belief that they are all "the same", so it will be interesting to see if that is really the case. She did tell me that we are "saving" the Femara, as it works really well with Bone Mets. (don't know how I feel about that!!) I have also heard Aromasin works in a different way that the other two so maybe switching them up is the way to go.I really think they are all so new, that no-one yet knows the best course of action with them.

    The Vit D I take sounds the same - Vit D3, Cholecalciferol. The Calcium is Calcium Carbonate. 

    Hope you are enjoying the weekend!

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  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Here is a little more info on the study. Again, not 100% sure when the first results will be reported, hopefully 2010.

    OK - time to get away from the computer!!

     O'Shaughnessy J.

    Texas Oncology, P.A, Baylor Sammons Cancer Center and US Oncology, 3535 Worth Street, Ste. 500, Dallas, TX 75246, USA. Joyce.O'Shaughnessy@usoncology.com

    Third-generation nonsteroidal aromatase inhibitors (AIs), letrozole and anastrozole, are superior to tamoxifen as initial therapy for early breast cancer but have not been directly compared in a head-to-head adjuvant trial. Cumulative evidence suggests that AIs are not equivalent in terms of potency of estrogen suppression and that there may be differences in clinical efficacy. Thus, with no data from head-to-head comparisons of the AIs as adjuvant therapy yet available, the question of whether there are efficacy differences between the AIs remains. To help answer this question, the Femara versus Anastrozole Clinical Evaluation (FACE) is a phase IIIb open-label, randomized, multicenter trial designed to test whether letrozole or anastrozole has superior efficacy as adjuvant treatment of postmenopausal women with hormone receptor (HR)- and lymph node-positive breast cancer. Eligible patients (target accrual, N=4,000) are randomized to receive either letrozole 2.5 mg or anastrozole 1 mg daily for up to 5 years. The primary objective is to compare disease-free survival at 5 years. Secondary end points include safety, overall survival, time to distant metastases, and time to contralateral breast cancer. The FACE trial will determine whether or not letrozole offers a greater clinical benefit to postmenopausal women with HR+ early breast cancer at increased risk of early recurrence compared with anastrozole

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2009

    bump

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  • gpawelski
    gpawelski Member Posts: 564
    edited December 2009

    The validity of chemosensitivity testing is that they have been well proven to have predictive accuracy which compares very favorably with that of comparable tests, such as estrogen receptor, progesterone receptor, Her2/neu and the newer molecular tests.

    Cell culture assays predict for response and patient survival in a wide spectrum of neoplasms and with a wide spectrum of drugs. About 50 peer reviewed studies, collectively including about 3,000 patients, every one of these studies showing above average probabilities of clinical benefit for treatment with assay "positive" drugs and below average probabilities of clinical benefit for treatment with assay "negative" drugs, where clinical benefit included both response and patient survival.

    What is claimed by the cell culture assays tests is that the particular type of test performed, accurately sorts drugs into categories of (1) above average probability of providing clinical benefit and (2) below average probability of providing clinical benefit. We are talking about short term (3-6 day) three dimensional cell culture assays, using cell death endpoints.

    These latter assays have been shown (in each and every one of close to 50 published studies in an aggregate total of nearly 3,000 patients) to identify the difference between drugs with above average probabilities of providing clinical benefit on one hand and drugs with below average probability of providing clinical benefit on the other hand, based both on tumor response and patient survival.

    No one has ever challenged these findings or failed to confirm them. These papers were specifically excluded from analysis a priori by the now-infamous 2004 ASCO review, because the review specifically excluded papers dealing with test accuracy (as opposed to "efficacy"), while test accuracy is the only criterion ever used to evaluate laboratory tests which impact on cancer treatment decisions!

    What is the appropriate standard to judge medical tests?

    1. Efficacy (use of tests improves clinical outcomes)

    2. Accuracy (the test accurately measures what they are purported to measure)

    Laboratory tests are judged by accuracy and reproducibility and never by their effect upon treatment outcomes. For instance, most tests used today in oncology have comparable "sensitivities" and "specificities."

    Pet Scans were not approved because they saved lives in a controlled clinical trial that compared the outcome of patients who received care with or without the benefit of a Pet Scan. They were approved because their performance characteristics (sensitivity/specificity) are reproducible, favorable and provide information to treating physicians.

    No test in oncology has ever been shown in prospective randomized clinical trials to improve patient outcomes. The existing standard has always been the "accuracy" of the test. This is true for every single test used in cancer medicine, from estrogen receptors to panels of immunohistochemical stains (IHC) to diagnosing and classifying tumor to Her2/neu and CA-125 to cell culture assays to MRI's, CT Scans, Pet Scans and so on.

    http://www.rational-t.com/

    http://weisenthalcancer.com/

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