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Comments

  • agness
    agness Member Posts: 406
    edited December 2015

    Just making sure that everyone has seen this. Anne has done some incredible work here, for any stage patient with BC. This has the latest information that far-exceeds the knowledge of our oncology teams.

    Anne, I kowtow to your great beneficence.


    Get this guide NOW

    Ann

  • mrshunny
    mrshunny Member Posts: 1
    edited January 2016

    Copy requested - looking forward to information all in one place!! Thanks.

  • bestbird
    bestbird Member Posts: 232
    edited February 2016

    All requests to date have been fulfilled, so keep them coming!

  • jensgotthis
    jensgotthis Member Posts: 673
    edited February 2016

    I just sent my request and am so grateful to learn that this exists! Just diagnosed last week with stage IV ...

  • bestbird
    bestbird Member Posts: 232
    edited February 2016

    Jennifer, I am sorry to hear of your recent diagnosis. Your request was safely received, and the document should be in your email InBox!

    In addition, below are a few tips for those who are newly diagnosed. I hope you do well for decades to come!

    If it's possible, have the met(s) biopsied to see what their estrogen (ER), Progesterone (PR) and HER2 status are, since they may differ from the original cancer (if you were previously diagnosed). If the cancer is ER+ and/or PR+, then the oncologist should be considering hormonal treatment, and if it's HER2+ then Herceptin and Perjeta may be considered along with a Taxane. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors in a similar manner as current hormonal therapy targets Estrogen Receptors (ER).

    Even if you are hormone receptor negative (ER- and PR-) you may still consider hormonal therapy according to the latest (2014) National Comprehensive Cancer Network (NCCN) Guidelines, "Patients may be candidates for hormonal therapy irrespective of their hormone receptivity status, provided that their cancer is in the bones, soft tissue (muscle, fat or nerves), or internal organs and is not causing symptoms. The reason for suggesting hormonal therapy is because sometimes the metastasis is indeed hormone receptor positive and the actual test results are incorrect. (This represents a major shift in thinking regarding potential therapies for TNBC and hormone receptor negative patients). From: http://www.nccn.org/patients/guidelines/stage_iv_breast/index.html#33/z

    This is very important: Please remember to keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside your medical network.

    You may also want to seek a second opinion at any point about treatment.


    Two published books which you may want to read are:

    "Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber.The author, an MD, was diagnosed with a malignant brain tumor which he survived for nearly 20 years by following the science-based principles described in his book.It contains excellent information about diet and supplements, as well as emotional well-being.

    "Life Over Cancer" by Dr. Keith Block, an expert in integrative oncology who combines cutting-edge conventional treatment with individualized and scientifically-based complementary therapies.This book is an excellent resource for those who are interested in combining conventional and complementary therapies.

    Please post if you have questions, and wishing you a great outcome!


  • susanmc
    susanmc Member Posts: 2
    edited February 2016

    Hello I'm new here. Just go my final Dx today from Memoria Sloan Kettering in NYC. Stage 4 - I guess this is my crying day or adjustmant day. I go back Monday to meet a Doc that will do a biopsy on one of the bones they say in my PET/ CT scan. Cant add much just that I'm terrified. Hoping stronger days to follow.

  • moderators
    moderators Posts: 8,743
    edited February 2016

    Susanmc-

    We're so sorry to hear that. The first days and weeks will be hard, but as many of our stage 4 members will tell you, once you have more information and a plan in place, it will start to get easier. Take this time to to cry and adjust, like you said, and use these boards as much as you need for support and advice and encouragement. We're here for you through it all.

    The Mods

  • bestbird
    bestbird Member Posts: 232
    edited February 2016

    susanmc, the initial days, weeks, and even months after an mbc diagnosis can be the hardest. The Kleenex company must make a small fortune during that time! Please know that it's normal to feel frightened, angry, and sad, and to express those feelings. Some people find it helpful to speak with a skilled therapist and/or take anti anxiety or antidepressant medication. Over time as you develop and follow a treatment plan, things will begin to become less daunting. Please feel free to post any time, and here's sending you a gentle hug!

  • dtad
    dtad Member Posts: 771
    edited April 2016

    Just curious. Why is androgen testing only done for Stage 4 and TNBC? Anyone?

  • susanmc
    susanmc Member Posts: 2
    edited April 2016
    Thank you, Bestbird !! Still trying to deal with this diagnosis. Trying to think positive ..those bad thoughts seem to sneak in there.






    Thanks for including me in the conversation






    Susan
  • hipline
    hipline Member Posts: 72
    edited July 2016

    Just sent my request for your guide. My sister in law has been diagnosed with Stage IV TNBC, bone mets. I plan on being her advocate and guide and am looking forward to educating myself. And seeing where advocacy can take me as I'm tremendously interested in that as my next career! Thank you!


  • bestbird
    bestbird Member Posts: 232
    edited July 2016

    Hipline, it is very kind of you to request information on behalf of your sister-in-law! The MBC Guide should be in your email In-Box along with a suggestion for advocacy.

    With kind wishes.

  • marciam
    marciam Member Posts: 84
    edited July 2016

    Hi Best bird;

    thanks for this document i look forward to reading it. I am using lots of the cancer complementary/ alternative therapies like juicing vegan diet, Reiki ( master myself ) and hypnosis for relaxation and meditation. I also went thru all traditional therapies and still take arimidex. thank yo u for your thoughtful gift. with what time we have lets assist others with genuine service, love and respect.

    blessings

    Marcia

  • bestbird
    bestbird Member Posts: 232
    edited July 2016

    Marcia, you are most welcome! I truly hope you'll find the document helpful with regard to conventional and supplemental therapies. Nearly everything in the booklet is supported by links to studies that can be printed and shared with one's medical team.

    Wishing you the best!

  • silviah
    silviah Member Posts: 35
    edited August 2016

    Hi....i just sent my request in. I'm looking forward to getting it.....hopefully more knowledge will calm me down a little.

  • bestbird
    bestbird Member Posts: 232
    edited August 2016

    All requests received thus far have been fulfilled! Silviah, I hope you find the document helpful; as you intimated, knowledge is power!

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited August 2016

    Bestbird remember wayyyyyyyyyy back when I suggested you ask the Mods to do a number change. Easy enough. It's just a PM.

  • bestbird
    bestbird Member Posts: 232
    edited August 2016

    sas-schatzi, Indeed I remember! Since we're getting close to 2,000, I'm holding out for that!

    The sooner more requests come in, the more quickly the number will change. As of today, 1,716 complimentary MBC Guides have been requested and forwarded!

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited August 2016

    Betsbird, YAY super............Great work

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited August 2016

    Hi folks, this is a fly by post RE: a research article posted by John Smith

    A few seconds ago sas-schatzi wrote:

    Folks I think John's link should be posted around in the threads you frequent.

    1.Reason is most here have sleep problems.

    2. It is a naturally occurring in the body

    3. we need to use any thing that gives us an edge.

    My personal experience with it is I used it for several years after BC @ the 10mg level along with Ativan. I had horrible insomnia. My ER+ path report said unfavorable outcome in two places. Always wondered why I haven't met'sd yet. Now 7 1/2 years.

    I keep wondering if there was "something" I was doing that was helping?

    Recent research is keying in on other things other than standard chemo drugs we need to keep these on our radar and make the decision whether they are reasonable to add to our regimen.

    We all know it's still a crapshoot. I find that word the most disgusting word in the dictionary. So, this is an emphatic statement.

    John reposting on my usual threads. Thanks for all the research you do.

    18 hours ago JohnSmith wrote:

    New article: Pre-clinical models reveal that Melatonin reduced proliferation of breast cancer stem cells in ER+ tumors.
    https://blog.cirm.ca.gov/2016/08/24/sleep-inducing-hormone-puts-breast-cancer-cells-to-rest

    TAGS: CSCs, transcription factor OCT4, encoded by the POU5F1 gene, mammospheres, Bisphenol A (BPA), MCF-7 cells

  • bestbird
    bestbird Member Posts: 232
    edited August 2016

    sas-schatzi, thank you for your wonderful encouragement and also for the information about Melatonin.

    In the MBC Guide, there's mention of the supplement in several places, and there has been study of the supplement in humans with bc.

    • Melatonin: Melatonin is a hormone produced in the brain by the pineal gland from the amino acid tryptophan. The pineal gland's production and release of melatonin is stimulated by (and remain high in) darkness and decreased by light. There has been research on melatonin and breast cancer models, and several potential mechanisms have been suggested such as melatonin acting as an anti-estrogen and possibly down-regulating the expression of estrogen receptors. Furthermore, several Clinical Trials have suggested the potential of melatonin in the management of breast cancer.(note that in some patients, melatonin has been known to cause stomach issues and/or diarrhea).

    In a study of 150 "solid tumor" patients (including breast cancer patients), the 1-year survival rate and the objective tumor regression rate were significantly higher in patients concomitantly treated with melatonin and chemotherapy than in those who received chemotherapy alone. In addition, the simultaneous administration of melatonin was found to significantly reduce the frequency of low platelet counts, neurotoxicity, heart damage, sores, and fatigue.Therefore, this study suggested that melatonin may enhance the efficacy of chemotherapy and reduce its toxicity, at least in advanced cancer patients of poor clinical status.The positive cancer prevention capabilities of melatonin are believed to be at their strongest when taken at night. Thus, it may be beneficial for chemotherapeutic drugs to be given at night along with melatonin, thereby maximizing the effect of both types of drugs.From:http://www.ncbi.nlm.nih.gov/pubmed/10674014

    In another study, 14 MBC ER+ patients who were unresponsive to Tamoxifen alone were given 20 mg melatonin daily in the evening along with Tamoxifen.A response was achieved in 28% of these patients.

    From:http://cancerres.aacrjournals.org/content/66/20/97...


    And for TNBC:

    • Melatonin as a Possibility for TNBC: An early stage study shows melatonin - a hormone that regulates the body's sleep and wake cycles - may have the potential to help slow the growth of certain breast cancer tumors, according to researchers from Henry Ford Hospital in Detroit.The study found that melatonin may inhibit tumor growth and cell production, as well as block the formation of new blood vessels in ER-negative breast cancer models.These early stage research results with melatonin in TNBC animal models achieved a lab result that has not been seen anywhere else, researchers claim. However, the study's researchers cautioned that this research is still in its very early stages and results are not yet ready to be translated for patient use.

    From: http://www.scienceworldreport.com/articles/12478/2...


  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited August 2016

    Bestbird, Thanks a bunch very helpful. VERY.

  • nrsteph
    nrsteph Member Posts: 108
    edited September 2016

    Thank you Bestbird for the quick response! I have been reading away! I now have so many questions for my onc. Very informative! I especially appreciate the concerted effort to include info for TNBC! I read a post from a stage 0 doesn't even need chemo person and she made TNBC sound like the worst thing in the world...so it was nice reading that it is being worked on from many different angles! THANK YOU!!!!

  • bestbird
    bestbird Member Posts: 232
    edited September 2016

    nrsteph, you are very welcome! The MBC Guide has a chapter about TNBC and related therapies, as well as a section under "Research."

    I am glad that the Guide enabled you to come up with questions for your doctor!

    Best wishes.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited September 2016

    Bestbird, need you to weigh in on this controversy, you are a great voice in the community. This study will haunt the BC and full cancer community for decades. It's a poorly done study.

    Thanks for all you do.

    this is the link

    https://community.breastcancer.org/forum/73/topics/847566?page=2#idx_45


  • bestbird
    bestbird Member Posts: 232
    edited September 2016

    sas, I wrote a response on the other thread.

    Wishing you a great day!

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited September 2016

    Thank you, Hugs it was good..........sassy

  • BC110615
    BC110615 Member Posts: 3
    edited October 2016

    I am interested in getting this as well. thanks

  • bestbird
    bestbird Member Posts: 232
    edited October 2016

    BC110615, I would be happy to send you a copy. Please see the top of this page for instructions about how to request it!

  • shepkitty
    shepkitty Member Posts: 878
    edited October 2016

    Bestbird, Long overdue tremendous "Thank You!" for your MBC Guide. So much information! I have long been having issues with pain management. Funny how things work ~ Jazzyjunebug had posted about Robaxin about the same time I received your guide and read about....Robaxin! My PCP Rx'd it and it really does help.

    This is a guide I will be referring to over and over; there is nothing else like it. Thank you, thank you, thank you!

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