I Want to Speak With ‘Triple Negative Metastatic Breast Cancer Patients’ That Have Responded To Treatment!

I am on a mission to find anyone that:

  1. Has been diagnosed with triple negative breast cancer
  2. They were treated with chemotherapy
  3. The chemotherapy didn’t work (cancer turned up somewhere else i.e metastatic)
  4. They are now responding positively to another/different treatment option (Traditional and/or Non-Traditional medicine)

I’m super keen to talk to you.

Dom

58 Replies to “I Want to Speak With ‘Triple Negative Metastatic Breast Cancer Patients’ That Have Responded To Treatment!”

    1. I had Trip Neg BRCA1 – 10 years ago, refused chemo & still fine – there are many alternative protocols you can try – Vitamin C infusions, alkaline diet & meditation, acupuncture….it’s expensive & takes work but can also help with metastasis…

  1. Hi guys. Pink Hope community had a story/post from a young woman with triple negative BC. You can find them on FB and website.
    Also suggest trying NBCF and McGrath web and FB community forums to seek info from similar diagnosis and experiences. And Cancer Council. McGrath breast care nurses can no doubt seek contacts for you via the McGrath network. I’m happy to ask my McGrath BC nurse if you don’t have a connection there.
    Love to you guys xx

  2. My sister had triple negative breast cancer, not sure if she can help though as not metastatic. She responded well to chemotherapy with Carboplatin, full credit to her oncologist Prof Michael Friedlander and surgeon Prof Phil Crowe. Sorry I can’t be of more help, good luck with your search for more information and treatment. Please reach out for anything

    1. Alex, that is such good news about your sister. That Carboplatin is not a pleasant drug. What a trooper. I assume she had a positive BRCA test as I think the Carboplatin is for BRCA positive? I have your details now. Thank you for reaching out. Cheers – Dom

  3. Hi , I fit the criteria you’re looking for and am currently responding to an immunotherapy trial at Peter Mac in Melbourne- also know of an excellent oncologist in Brisbane, Jim Coward who has trials for triple -.
    You’re welcome to contact me I hope I can be of some help to you.

  4. Hi I fit the criteria you’re looking for and am currently responding to an immunotherapy trial at Peter Mac in Melbourne- also know of an excellent oncologist in Brisbane, Jim Coward who has trials for triple -.

    1. Fiona – Thanks so much for connecting. I really appreciate it. I’m extremely happy for you and your positive response to Immunotherapy. That’s great. I will start a convo with you on email of that’s alright. Dom

      1. I have a good friend in Brisbane that fits what you are looking for. Just about to start a trial. Can I find out more about why you are seeking to connect before referring her? Sj

        1. Hi Sara, Lou is about to start a trial in about a week. I’ll add all the details to this blog shortly.

          I’m doing as much research and talking to as many people as possible to identity options if Lou does not respond to her trail.

          It seems that a large number of patients with stage four cancers that are doing well have combined non traditional medicine treatments with traditional. Or perhaps even done non traditional instead. There are also patients that are doing treatment overseas and having success.

          As TNBC is a less common cancer I’m keen to learn anything I can myself so I’m a little more founded with decisions and can potential help others.

          Dom

  5. My sister in law has mestasatic BC ( in liver and bones-type – hormone positive).
    She sent me this link in case you hadn’t read it.
    She is using the Ketogenic diet strictly although she can’t have meat as her cancer feeds on hormones.
    https://www.cureus.com/articles/7528-efficacy-of-metabolically-supported-chemotherapy-combined-with-ketogenic-diet-hyperthermia-and-hyperbaric-oxygen-therapy-for-stage-iv-triple-negative-breast-cancer#.WWAIRqBXid4.twitter

      1. Tammy ( my sister in law)
        tampolomka@hotmail.com
        She says a great website she uses for info & support is Team Inspire… Lots of replies to all qsts, and heaps of search engines. It’s great (especially for advanced cancers) . Tammy’s happy to talk any time tho’ your cancers are very different. (She says she’d be looking at immunotherapy even tho it’s expensive It’s no good for her type but hopefully soon and getting genetic testing like for the BRACA gene… may help for a targeted therapy)
        Xxx

  6. Hi Dom / Louise,
    i checked with my friend at the Garvan institute and got this reply..

    Hi Claire, I see from previous post that they’re taking to Elgene Lim, and via Amy, are enrolled onto our MoST trial. These would have been my two suggestions, and they’re in the best hands now.

    1. Claire, thanks so much for looking into this for us. One of Lou’s biopsy samples went over to Professor Lim and the MoST trial yesterday. Hooefully this trial has some success for us. It’s good to get this validated by multiple sources.

      1. Hi Dom,

        Thrilled that Lou has been put forward for the MoST trial at the Garvan. Paspaley (where I work) have raised over $450k from the sale of our Kimberley bracelets by donating 25% from each sale. These funds go directly to supporting patients on the MoST trial. There have and are some very positive results!
        Let me know if you need any extra help connecting with the ‘right’ people at Garvan.
        Annamiek

        1. $450k to the MoST, AMAZING!! Lou’s cancer cells went into mice today in this trail. Thanks so much for your support! Dom

  7. I fit your criteria, but will have to wait til tomorrow to tell you whether this crazy clinical trial I’m on is working! Happy to chat though. X

    1. Tess, Are you at eight weeks of a IT trial and did you just have progrsss scans?

      I’ll email you and see how it all went. It sounds like you are a couple of months ahead of our situation.

      Dom

  8. Hi Dom I meet some of your criteria Triple negative breast cancer, treated with chemo and radiation, my oncologist thinks its highly unlikely that it is either BRACA 1 or 2, as I have no family history of relatives with cancers that I know of although my daughter is doing gene testing for her own peace of mind as they will not test me free of charge, I cannot afford 2,000 dollars to be tested. I finished treatment last August although the chemo was cut short because the Taxol caused a clot on my lung, so far I am feeling quite well so dont know if cancer is still present or not I am seeing surgeon and oncologist every three months so cross fingers things will be fine.

  9. Hi Dom, I was diagnosed with TNBC 6 years ago. After completing 8 mths of chemo & radiation it had matastisized to my lung and was told I may have a year to live. Did another 6 mths of chemo whilst intensively researching my options. First visited a Tradition Chinese doctor and began 2 mths of mushroom based diet. Then booked into the Hallwang Private Oncology Clinic in Germany for preventative treatment, of which 2 of these treatments have been on the news recently to be possible game changers for TNBC. Since returning from Germany over 3 1/2 years ago I initially high dosed the canna oil and I’ve been on a maintanence dose ever since.

  10. I am a Mum of 3, was diagnosed with triple negative breast cancer on Oct 13, used chemo as part of my treatment, not metastatic, attended specialist yoga treatments during treatment and made diet adjustments, happy to chat , sending positive thoughts regards Emma

  11. Hi Dom
    My mum was diagnosed with triple negative breast cancer in 2012 and she was initially treated conservatively at the Mater with surgery, chemo and radiotherapy. The cancer returned very aggressively at the end of 2013 and had metastasised to her lung and brain. We sought a second opinion from Prof Michael Friedlander at POW private (also Royal Women’s) and the plan was for mum to trial PARP inhibitors. He has had success with quite a few patients with metastised triple negative (he sees a lot of BRCA positive patients – my mum wasn’t). Unfortunately mum didn’t get enough time to start the trial but I highly recommend him as the best in the field and I wish we had seen him at the beginning of mums diagnosis. Sending love to your family and all my best wishes. Karen

    1. Very sorry to hear about your Mum Karen. That’s very sad.

      I will look Michael up and get Lou’s cAse in front of him for validation or other considerations.

      Lou starts a IT trails with PArp in a about a week. Fingers crossed she responses. I’ll keep looking at backup uptions.

      Thanks so much for connecting. Dom

  12. Have you looked at Careel nbectong through CancerAid and the App/Services they provide. I believe that connecting patients on similar journeys is part of the Finctionit provides.

  13. Hi, in NZ, Katy Boyd works in tandem supporting treatment from a nutritional perspective, she’s amazing and extremely honest – session can be done via skype. I know her personally and (unfortunately/fortunately) professionally too now as she’s currently helping my sister who has grade 3 breast cancer. I can’t recommend her enough to provide a different perspective.
    http://www.theboydclinic.co.nz/cancer-care/

    Wishing you all the best in your quest. – Cath

  14. Sending you lots of love and good wishes.
    I don’t know anyone with that particular cancer. Sorry. I am a hormone positive stage 2 breast cancer survivor.
    I would highly recommend you watch this. Its free for the next 10 days.
    Sharda xxx

  15. Hi Dom
    I was diagnosed with triple negative lobular breast cancer 2 years ago. I had a double mastectomy, chemo, radiation and a year of Herceptin. I’m now on Femara (hormone blocker).
    I have no evidence of metastasised cancer and so not sure I can be of any help….. but I’m happy to chat all the same.

    My oncologist Prof Alex Menzies is absolutely fantastic. All of my treatment was at The Mater, and I can’t rave about the care I received there enough.

    I read a very very interesting book called The China Study while I was going through treatment, and as a result have completely changed my diet. I recommend you read it.

  16. Hi Dom,
    I saw your appeal via friends of friends, it really touched my heart.
    I reached out to a colleague in the US who is undergoing treatment for breast cancer, and she is knowledgeable on research for the criteria you mention above. She is happy to talk with you directly, please message me for her email address if another conversation could be of use.
    She also recommended to look at this trial in Australia, I will post below.
    Wishing you the very best of luck.
    Kind regards,
    Angela

  17. And here is the study my colleague in the US recommended to look into:
    “ I just ran across the following trial in Australia. While your friend is triple neg, she could have some level of HER2 expression (e.g. I am HER2 neg, but I have enough HER2 to be considered HER2 Low). They are starting to do a number of studies that help patients like me. The following is one that is only offered in Australia. Could be applicable to her or not. https://www.clinicaltrials.gov/ct2/show/NCT02512237?term=her2+low&recrs=ab&cond=Breast+Cancer&draw=3&rank=24

    Hope it helps.

  18. Dear Dominic,
    I’m really sorry this has happened to your wife. I’m happy to help you. I’m triple neg, metastic for past 8 years, have tried lots of different things, we have four kids.
    Louise

    1. Hi Louise, thanks for connecting. I’ll shoot you and email shortly. Great effort on your eight year battle. An inspiration. Chat soon. Dom

  19. Hi Dom and Lou, I was diagnosed with triple negative breast cancer in 2015 was given chemo then three ops ending in a mastectomy, no radiation. I am lucky there is no metastasis but if I can be of any help please let me know.
    Vicki J

  20. Hi Louise, I spoke with your dad the other day. You should have my number. We’ve been going through this since 2012. Robyn was diagnosed with BC. Surgery revealed 3 different cancers. She was subjected to what was referred to as ‘killer chemo’ & it nearly worked.
    Canna oil kept her alive & in reasonable health but her heart was badly damaged.
    Early 2017 she was scanned & tumours were detected in all of her organs & in her bones. The chemo again nearly killer her.
    A few months ago I had a chance meeting with Peter Gale who has become a good friend & a great help. He’s a retired professor of microbiology & is heavily involved in nutrition & wound healing. Website bigrevhealth.com
    A scan a couple of months ago revealed that one tumour only was active & we are hopeful that a scan on Friday will show her clear & we can stop the chemo & she can get on with her life.

  21. I’ll second Karen Bowers’ recommendation to Prof Michael Friedlander, my sister-in-law found him after her initial treatment at the Mater. You’re in good hands w/Prof Kefford too.

  22. Thanks Anna, we’ve had several people now recommend we chat with Michael. We will 100% reach out to him. Thanks so much for posting! Dom

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