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

Anyone out there with triple negative, metastatic breast cancer that is doing well with 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

Week One: Appointments For Plan Of Attack

Louise Decelis and Dominic Byrne Skiing in Telluride

Professor John Boyages I 7 August

  • Based on Louise’s treatment summary you approved, there wasn’t any variation to your recommendation of treatment
  • The only thing John was keen to do was a PET scan
    • The PET scan didn’t seem to be a priority for Dr Morgia, Dr Forster or Dr Kay Xu
  • This meeting with John was valuable as it validated previous decisions (mainly tumour extraction post chemo) and the current recommendation
  • i.e Biopsy, Radiotherapy, IT Javelin/parp.

    Dr Marita Morgia I 7 August

  • Keen to start radiotherapy two weeks from last Xoloda intake
  • Will do six rounds
  • Needed copy of latest scans
  • Need biopsy done

    Profesor Elgene Lim I 8 August

  • We went through all the past and present detail with Dr Kay Xu and then spent time with Elgene
  • Elgene thinks the Macquarie IT Javelin/parp trial is the best current option
  • Lou will start some testing ASAP looking at a large panel of genes to help find the driver of her cancer. This Tumor analysis was previously done OS but is now done in Dr Lims lab. It’s part of The MoST trial:
    • MoST is a personalised experimental treatment based on Lou’s unique personal and cancer genetic profile. Rather than focus on the tumour location, we focus on a shared harmful variant, we then target the variant
      • Create avatars in mice, break down the tumours into single cells, find the mutation result and match it to a treatment
  • After Elgene we met with Dr Amy Prawira to give consent and blood for the MoST trial. Amy is running MoST
  • This meeting also validated past and recommended treatment

    Katrina Ellis I 9 August

  • Katrina is a naturopath and has successfully naturally treated triple negative metastatic breast cancer cases, one being a mutual friend
  • Cancer is classified as MDR1, it uses angiogenesis to spread, the idea is to test and see what is needed to block the spread. “Stop inflammation, stop cancer growth.”
  • RGCC Test (personalised testing, individual profile to help achieve the best treatment outcomes)
    • Isolate cells – all the genetic info taken from a blood sample
  • See if the cancer is vulnerable to heat?
  • We talked about some pretty alternate therapies: Hyperthermia, Verita Life, Rife Machines (Spooky Two), coffee enemas, near far infrared sauna’s….
  • Diet/Nutrition advice, high genistin – this blocks vegf, egf etc
  • Does Louise have a tumour marker?

    Dr Tristan Barnes I 10 August

  • Advice reflected Ben’s plan. Tristan’s recommendation/consideration:
  • IT or paying for Keytruda
  • Eribulin was also a consideration?
  • Trial options:
    • Macquarie – Javelin Medley
    • Prince Of W: Phase 1 with parp + PDL-1 (BGB-317/BGB-290-study-001
      • (this one might be BRCA only?
  • Tristan was keen on “foundation testing.” Next Generation Sequencing, PDX – Patient-derived xenograft
  • Which seems to be all covered with the MoST trial at the Garvin?
  • Some of the side effects of IT (intravenous) could be: fatigue, inflammation (rash, diarrhoea, hepatitis, endocrinopathies) / Parp side effects (tablets): nausea, constipation, blood counts down

    Additional people recommended or been connected with but haven’t spoken to:

  • Professor Rick Kefford; Away on holidays but I assume we will see him soon – as he oversees the Javelin trial
  • We are being lined up to chat with Professor Allan Spoigelman next week
  • Email contact (3rd party) with Dr Ursula Jacob (Germany)
  • Email contact (3rd party) with Sadia Saleem, MDAnderson (USA)
  • Recommended to talk to Professor Tony Tiganis, Monash University Melbourne
  • Look at NHMRC Clinical trials – Sarah Chinchen?
  • A good friend working for a Pharmaceutical Company said:
    • “The anti – PD1 / L1 drugs (eg Keytruda, avelumab, spartalizumab, etc) seem to be showing good signs but do cost a lot! I would recommend going for a clinical trial – not just because it is free but it is often in combo with other exciting compounds and hopefully you get special care/attention also. I sent a link to Lou with a trial we have just opened (open in Perth at the moment but Melbourne shouldn’t be far behind – no Sydney site for this one) which looks promising and allows people to be enrolled who have had previous systemic therapy (regardless of whether it was for metastatic/advanced disease or not). There are a few others which seem to be open, including the one Ben has referred to”
  • I’m keen to learn about Natural Killer Cell Therapy for cancer as it’s been mentioned a few times……

Louise DeCelis’s History of Diagnosis And Treatments For Triple Negative Breast Cancer

Louise DeCelis, History of Treatments For Triple Negative Breast Cancer
  1. Diagnosis date: June 2017 – Stage IIA (cT2N0) triple negative invasive ductal carcinoma of the left breast. 22mm. Ki67 60%
  2. Chemo: Started 12 July 2017 – Neo-adjuvant chemotherapy
    1. Three rounds of FEC and three rounds of D (12Jul17 – 24Oct17)
      1. From my memory, the tumour shrunk slightly in the first three rounds but then grew in the next three rounds….
      2. One round (4th) had Carboplatin in it (whilst awaiting results of BRCA testing)
        1. Note: No mutation was detected in ATM, BRCA1, BRCA2, PALB2 or TP53
      3. She had an unplanned admission to hospital with febrile neutropenia after C4
  3. Breast surgery: Left skin-sparing mastectomy and sentinel lymph node biopsy on 22 November 2017 – (Prof Andrew Spillane).
    1. Tumour report attached: RCB-III response to treatment with residual 23x20mm grade 3 triple negative invasive ductal carcinoma. No evidence of treatment effect. 1/9 lymph nodes involved with 2.25mm macrometastasis. No ENE or LVI.
  4. Radiotherapy: Mid January- 22Feb18: 24 rounds (Dr Marita Morgia)
  5. Oral Chemo: Six rounds of Xeloda (capecitabine) (eight were planned) + Zoladex (goserelin) for ovarian suppression
  6. Pain in the ribs (for about six weeks) was the catalyst for scans
    1. Abdo USS 30Jul18
    2. CT chest/abdo/pelvis 31Jul18 – report attached
    3. whole body bone scan and Liver MRI 03Aug18
      1. i. Bone Scan – report attached
      2. ii. Liver MRI – report attached

HERE IS A DOCUMENT THAT HAS ALL THE REPORTS THAT WE HAVE IN OUR POSSESSION.

Please see this page that I will continue to update with ongoing treatment.

Oncologist Recommendation For Immediate Treatment

Current recommendations from Lou's Medical Oncologist
  1. Biopsy
    1. To confirm receptor status and provide tissue for further testing re clinical trial eligibility
  2. Consider radiotherapy to rib lesion for pain relief (best to do early rather than need to interrupt systemic treatment)
    1. Dr Marita Morgia’s team to arrange appointment
  3. Clinical trial
    1. JAVELIN PARP Medley trial (avelumab plus talazoparib)– Prof Richard Kefford at Macquarie University Hospital
    2. b. Other options include:
      1. Keytruda (pembrolizumab) – self-funded
      2. Another clinical trial
  4. ARCS- Multi tumour (anetumab ravtansine in mesothelin expressing advanced solid tumours) – Prof Richard Kefford at Macquarie University Hospital
  5. Xgeva (denosumab) to treat and protect bones (to be discussed)