With one of our daughters-in-law, Barbara and I met with Dr
Kate Mahon, my oncologist on Monday 29 February. I had been wondering if
the cancer was growing again and the CT scan confirms that it is. A
non-calcified part of one of the original lesions in the liver has grown one
centimetre since the previous CT scan. Dr Kate outlined several
choices. The two fundamental choices are:
- Do nothing for a while and if I continue to do nothing the probability is a maximum of one more year of life; or
- Join a phase 1 trial of a new B-RAF Inhibitor – BGB-283 <https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=367264> and <https://globenewswire.com/news-release/2015/07/14/751931/10141623/en/BeiGene-Doses-First-Patient-in-Phase-Ib-Study-of-BGB-283-a-Novel-Second-Generation-B-RAF-Inhibitor.html>.
I have decided to join the trial, which I will begin with an
appointment with Dr Kate next Monday, 7 March. Because I have the B-RAF
inhibitor (about 8 to 10% of cancer patients do), this treatment offers the
opportunity of a chance to switch it off. Dr Kate has another patient
with this inhibitor who did not respond to chemo. However, this B-RAF inhibitor drug has halted
the growth of her cancer for the last six months.
This treatment will:
- involve five weekly Monday appointments, a two week break, then two more weekly appointments then ongoing three weekly appointments with Dr Kate
- taking the inhibitor tablet daily
- having a CT scan every six weeks
for as long as the treatment is effective and provided I do not
have serious side effects. There is a low risk of serious side effects
with the main one being acne like rash on the face.
Advance Care Request Forms Lodged
I signed four originals of my advanced care request with
Barbara witnessing it and Dr Kate approving it. Dr Kate will lodge an
original with each of the Chris O'Brien Lifehouse and Royal Prince Alfred
Hospital. I gave one to my GP when I saw her on Tuesday afternoon and I
have kept the fourth original. The advanced care request includes wanting
palliative care treatment at home.
Keeping BezCan Going
I am glad that I have not booked any trips until June.
Certainly it is good that I did not book a Uganda trip in April. The three
weekly visits with Dr Kate will start during May or June. So we have the
challenge of how to operate The BezCan Project effectively and try
to move it forward.
While our governance group is very effective, we do not have
strong large fund raising skills. There
is a strong likelihood that we can obtain tax deductibility in Australia
through another existing Australian organsiation. Unfortunately, I am finding it harder to stay
on top of things and have not made the application yet.
I would love that The
BezCan Project can finance the completion of Canaan Junior School’s primary
campus: two classroom blocks (with offices), the multipurpose hall and kitchen. My estimate is that it will require
A$300,000/US$210,000 to A$400,000/US$285,000.
Do you have fund raising capability?
Do you know someone who does who could be interested in helping The BezCan Project? Are you interested in providing some generous
funding? Please contact me so we can
explore such opportunities.
A Fortunate Life
Overall, I have been fortunate that I have responded so well to
chemotherapy. Five years ago this March my life expectancy was one to
five years. I was also told that chemotherapy
would only be effective for 3 or 4 cycles. Mine was effective for almost
three cycles. Now it is the success of the B-RAF Inhibitor BGB-283 that
is crucial.
And In The End
Now my mind is also thinking about my dying. I still hope that I might live to the end of
2017 when The BezCan Project is
scheduled to finish. There is now a
likelihood I will not feel up to overseas travel. I feel I might die before the end of this
year. I do not know if this will be so
but this is how I feel.
What I do know is that when I am feeling low, like I have been
the last few weeks, then I find it harder to be with people. What this means is that I expect that I will
not want to be seeing visitors when I am in my terminal decline. My family will be supporting me at this time.
This means that now is your opportunity for arranging visits (to us or we to you). I would love to see people while I am still
feeling OK. I warmly invite you contact me to arrange a
visit with me or with Barbara and me.
Some of these statements are strong but they reflect how I feel
at present. Perhaps, I have become a
member of the ‘grumpy old men’ set! See
me before I become too grumpy!
View from our accommodation at Pokolbin in the Hunter Valley during our week their in late February |
The kangaroos lazing on the grass near the lake |
Thanks for sharing these details David, we continue to pray for you and hope that the prognosis is not as bad as you expect. It's good that you have such wonderful medical and family support. I hope to see you before you get 'too grumpy' as you put it. Trevor
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