I have my Marching Orders!!

Well I start my CLL treatment on Monday, February 1st and, following the leadership of Deborah Sims, I have decided to keep my journal in the form of this blog. While I appreciate the support that we all find in the various Facebook groups, in many ways I am a little more comfortable with this medium. In the past we have used blogs to record our overseas trips so it seemed a good thing to use the same approach for this journey too.

Before I even start, I want to express my deep admiration for and my personal -gratitude to Deborah Sims, whom I very much see as the Australian Chuck Yeager of CLL – don’t miss the point that Chuck died, in his own bed, at 97 which is how I hope Deborah goes out!!. You can read about Deborah’s journeys in her own blog which has several stages beginning with Diagnosis in 2011 (at the age of 38!!); Chemo in 2012; Obinutuzumab & Venetoclax in 2015; Ibrutinab in 2017 and CAR-T in 2020!! (I may not have all the dates quite right but you can read for yourself!) Anyone with CLL in Australia knows how extraordinary she has been in the face of real fear; how courageous and determined, yet warmly human she is; what a great lobbyist she is and how much she has given back.(if you are new to blogs, or a bit non-tecchie, and want to read a summary of Deborah’s early years with CLL – this has been very helpful for people like me just starting out – you’ll find it easier to go straight here which is a post from February 2016 which covers the early years in one go!). There are other courageous people to acknowledge, of course, but I don’t “know” them so well. A special mention, of course, to Dr. Brian Hoffmann and Randy Shirley. It’s hopefully unnecessary but in case you have never seen the Leukaemia Foundation or Lymphoma Australia or the CLL Society of the US – these are wonderful sources of help, information, support and good stories!!

I just wanted to put you in the picture about Mick’s illness for which he is starting specific and direct treatment on February 1st.

I have CLL (Chronic Lymphocytic Leukaemia) a blood cancer which affects a reasonable number of people. The most common case is a “codger” aged around 70 – as always, I am a classic example of the genre! It was diagnosed several years ago and following a few years of “watch & wait” (regular full-blood tests and examination 4 times a year) has to be treated now due to a significant increase in my white blood cell count.

Consequently, at Chris O’Brien Lifehouse at RPAH, in Sydney, Mick will have six, 28 day cycles involving infusions of Obinutuzumab (a monoclonal antibody – this helps Mick’s immune system attack the cancer cells) combined with a strong course of Venetoclax tablets (a very modern specific protein inhibitor – this helps the cancer cells remember that they can die naturally, just like healthy hair and skin cells, something the cancer cells have “forgotten” how to do) which will continue on for six months beyond the infusions.

Ad astra!

Published by Mick Prest

Retired former elearning Jedi

3 thoughts on “I have my Marching Orders!!

  1. Aw thanks Mick and good luck with the start of treatment – I’m sure you’ll love how quickly you’ll start feeling better. Looking forward to following your blog and thanks for the kind words (and all the support of my own journey on my blog too!)

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  2. Mick, I have always looked up to yourself and Elaine and I have no doubts that you will give “this” a run for its money. It is 20 years this year, since I had my cancer and I am still here giving everyone a hard time. I expect nothing less from you!
    Wow $69,000 per course compared to either $41 or $6.60 you are right – something good has come out of COVID and now you can have the new treatment instead of chemo.
    I will be following your blog, thank you for sharing. I wish I had kept some kind of journal over the course of my journey all those years ago.
    We will keep you in our prayers and send lots of love to you, Elaine and the family.

    Chris and John xxxx

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