Week One: Appointments For Plan Of Attack

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……

Leave a Reply

Your email address will not be published. Required fields are marked *