April 2012 Treatment Update

It has been quite a while since  my last post.

In the intervening period my mother passed away (late January) and my great friend, outstanding New Zealander and cancer “co-traveller” , Lloyd Morrison, succumbed to his disease.

I have taken my time to reflect on these events and the messages for my own journey. The common ones are these.

Both Mum and Lloyd enjoyed full positive lives.

They vastly outlived their survival “prognoses”. Twenty or even 30 years ago no one would have predicted my mother reaching  just a few days short of her 88th birthday. After Dad died most expected her to last a few months. She enjoyed another 6 full years living well.

Lloyd’s journey was simply extraordinary. Following his extremely bad prognosis he remained positive and engaged in his family, business and the management of his disease. If I was to achieve his ‘survival to prognosis ratio’ I will survive to be at least 75 years old (I am fortunate to have scientific developments currently working in my favour - as I explain below).

Their positive approach to life generally enabled them to manage their ‘end -of-life’  journeys extremely well and to achieve quality ‘exits’.

They provide me with many insights and inspiration for my own journey.

And I continue to travel well.

A little more than a month ago I underwent a PET scan. Two weeks ago I met with my oncologist to discuss the results and next steps.

The scan shows that I remain in complete remission.

Whatever the relative contributions of the different components of the ” integrative” approach I am taking to my disease (comprising the drug, Tarceva,  a strict diet,  daily exercise , meditation/visualisation and regular counselling) it  is continuing to work.

Perhaps of more importance I am enjoying life more fully than “before cancer” and feeling as well as I can remember.

It is probably worth summarising the way medical science views my situation.

  • A little more than 80% of the lung cancer population has my category of lung cancer-non small cell lung cancer (NSLC).
  • NSLC can be “driven” by a  number of  genetic mutations.
  • Around 10-12% of NSLC patients have the EGFR mutation as either the primary or sole “driver” of their cancer progression.
  • Tarceva (Erlotinib) is one effective EGFR inhibitor for those with this mutation.
  • Eventually the cancer will become resistant to this (or other similar) inhibitor, although there appears to be a large variance around the development of resistance and the progression of cancer. (In the global NSLC population a few patients have been on this drug without progression for a number of years).
  • In around 50% of the cases where resistance develops and the cancer progression resumes, the culprit  is the (subsequent) mutation T790M. Progress is being made in identifying others.
  • The earlier analysis of my biopsy by the Peter MacCallum Institute (Melbourne) revealed that I have the EGFR mutation and with this knowledge I was prescribed Tarceva once my cancer progressed (following a  period of remission at the end of my chemo treatment).
  • My  response to Tarceva is that it is keeping me in complete remission.
  • From this we can infer  that the SOLE driver of my cancer(up until now at least)is the EGFR mutation.
  • My tolerance of the drug (near absence of side-effects) is probably related (at least in part) to my integrative approach outlined above and means I can continue to take the drug until the cancer becomes resistant to it and it begins progressing again (but even then my treatment may entail a “cocktail” of  therapies which includes Tarceva).
  • There is a lot of scientific development activity in understanding the pathways by which cancer develops resistance to and progresses around EGFR inhibitors.
  • The most progress to date is in relation to the T790 M mutation. There are a number of trials (I found 3) that are testing drugs or cocktails thereof which inhibit the T790M mutation(which can be taken in conjunction with one of the EGFR inhibitor drugs). At least 2 of those trials are showing very encouraging results.
  • The current plan is to leave things as they are (that means 4/5 monthly scans), watch global developments in my area closely and establish some links with Richard’s contacts in Australia who are at the “front edge” of these developments.
  • When (and I will venture an “if”-as low a probability as that might seem) the cancer resumes progression  Richard will undertake a biopsy of the affected area(s)  to see what pathway the cancer is taking to get around Tarvceva.
  • That will inform our decision as to what trials /therapies I might participate in or deploy to inhibit whatever mutation the cancer is exploiting (it may be T790M or something else).
  • The longer I stay well the greater the range of therapies available to me to manage my cancer. (The likely next big scientific development arising from research into genetic mutations and their pathways, and the relatively new field of “epigenetics,” is personalised drug therapies, based on individual DNA profiles, that will manage cancers on a longterm basis).

In the meantime I continue my own research into the different aspects of my integrative approach so that I can expand my knowledge and upgrade my own ”management” regime. I know that this integrative approach (which includes engaging with and benefitting from the advances of modern medicine) is vastly improving the quality of my journey and significantly improving my odds of remaining well and surviving for a period that might well redraw the survival curve for my cancer.

Over the last few months I have been undertaking a survey of the research and literature into the molecular biology of food, its impact on the immune system and, more specifically, on cancer prevention and management.

I will summarise what I have learned in my next post on “Comments and Experience”.

Without giving the game away it turns out there is a great deal each of us can do to prevent and manage cancer.Indeed some foods can produce results that are both complementary to and as effective as conventional therapies (drug,chemo and radiotherapy) – with none of the downsides.

More on that soon.

Thank you all for your support and interest.

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24 Responses

  1. Dan says:

    Great write up dad.

  2. Geof Shirtcliffe says:

    Good stuff, Rob. Great to hear you continue to travel so well. Am looking forward to the promised next instalment.

  3. Penny Evans says:

    Super stuff. I am eagerly awaiting more info on good foods. Oh and I love the bit about enjoying life more fully than before cancer. xx

  4. Ken Coveny says:

    Good on ya Rob, healthy living has got to be good for you

  5. Martin says:

    Glad to hear you are enjoying life more fully and are as well as you can ever remember! Excellent stuff.

  6. Lisa Turner says:

    Some great info Uncle looking forward to the next update and to catching up soon xxxx

  7. Alison Hewett says:

    It is great to hear that you are continuing to do well, long may it continue. Thanks for sharing your insights into your progress and prognosis – it really is fascinating reading and I look forward to reading about the food side of things. You realise you should be writing a book???? Ali xx

  8. Great to hear – and the usual “intensive research” we have come to expect! Great to hear you are enjoying plenty.

  9. Sally Munro says:

    Go Rob! Waiting with much anticipation for the next installment.

  10. Phyl says:

    Really enjoyed having you and Maureen to stay at horopito
    Nice to have the ‘old’ Rob back. See u soon. Xx

  11. Michael Sutton says:

    Sorry for the recent loss of your mother Rob.

    It is wonderful to read your writing and to understand aspect of your experience and insight which informs us all.

    Lloyd’s send-off will be with me as a strong memory, as I journey on in my life.

    ~~~ Michael

  12. Jim and Eve says:

    Rob

    Thanks for the update on your progress. We appreciate the knowledge and wisdom you are providing that can make a difference for all of us.

    Best regards

    Jim and Eve McMahon

  13. Ben Wilson says:

    Reading your posts with tremendous interest Rob – as our father goes through the same treatment. Looking forward to the next installment on the influence different FOOD can have on cancer. One of my fathers (few) vices is good food. If specific food does have significant potential ‘complementary’ benefits we will certainly be encouraging him to enjoy the right kind of food!

  14. Robin & Winifred says:

    Rob

    Great to read you most comprehensive update. Your continued research is an inspiration.

    Continue to “travel well” and we look forward to you next instalment.

    Best wishes

    Robin & Winifred Sheffield

  15. Bryce Wilkinson says:

    Super blog Rob. Food for thought for all of us about lifestyle focus, attitude of mind, and the virtues of dispassionate, objective analysis. You have turned a formidable challenge into a rewarding discovery experience across a wide range of fronts. Wow! Long may you remain in remission, but it is great that Plan B is well in sight regardless.

  16. Glen Towns says:

    Great update Rob, and it’s wonderful to see you looking so good. John and I look forward to catching up with you and Maureen this weekend.

  17. Peter says:

    Great update on your progress Rob. Following you on your journey from the Netherlands. Wish you all the best!

  18. John says:

    Rob
    having just been admitted to the Stage 4 lung cancer club I look forward to the next installment on food. I find your journey an inspiraation for me at this time. All the best for your continued good health

  19. Mark Clare says:

    Rob

    Keep writing – and just keep going…

    Mark

  20. Scott Perkins says:

    Rob – so heartened to see great medicine and attitude prevailing. Scott

  21. Richard says:

    Good work mate.

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