Comments for Andrew's Blog

Comment on Why the “Big Data” Story is Bigger than Lance by John Negus

John Negus — Thu, 28 Mar 2013 04:55:02 +0000

Hi Andrew.
I was interested to read in Dr. Sharman’s blog http://www.cll-nhl.com/2013/03/choosing-first-therapy-in-cll.html of a study collecting data on approx. 1500 CLL patients (http://clinicaltrials.gov/ct2/show/study/NCT01081015?show_locs=Y#locn) that will run till 2017. Isnt it a pity that we can’t seem to be able co-ordinate ALL the data from ALL the hospitals treating cancer so that we can start looking at statistically significant data rather than the limited data available from clinical trials.
I really don’t see how privacy comes into it. Names are irrelevant to such a study. The real problem is that most patient records are still kept as hardcopy notes that are never transferred to computer and not co-ordinated with the digital data from the patient’s pathology tests.
Once all the the data is digitsed, analysing it is just a matter of having a large capacity fast computer and of querying it intelligently. I’m sure that there would be some really significant information emerge once data trends became available.
I’m sure that in the long run, such data collection would save immense amounts of healthcare dollars. As usual, however, it’s the politicians we must convince. Just try talking to one about spending more money on Health or I.T. (at least in Australia) and watch their eyes glaze over .

Comment on Back to School: An Ongoing Need for Patients by Karen

Karen — Fri, 22 Mar 2013 21:19:56 +0000

Thank you for this great post on the importance of patient education.

Comment on Are New “Quality of Life Drugs” Worth the Expense? by my blog

my blog — Wed, 27 Feb 2013 19:30:40 +0000

Everyone loves what you guys are up too. This type of clever work and coverage! Keep up the wonderful works guys I’ve you guys to our blogroll.

Comment on The Triumphs Over Illness You Don’t Hear Enough About by sammie

sammie — Sat, 09 Feb 2013 23:51:30 +0000

I couldn’t agree with you more on this topic. My dad has mettic prostate cancer and i m desperately looking for long term survival stories but can’t find many…maybe one or two. I knowhow it feels

Comment on I’m Getting My SH@T Together, and You Should Too by John Negus

John Negus — Sat, 09 Feb 2013 10:46:54 +0000

All too true Andrew. I say in my blog “Do all the things you need to prepare for death. Remember that you should have done them anyway. You could get hit by a bus going to the hospital.” However, there are still things I need to do, 12 years after being diagnosed. Seems that being “pre-occupied” with non-essentials is an all too common affliction for which there is no cure

John Negus

Comment on A Parent’s Anguish, Ovarian Tumor at Age 10 by Tina Rubinstein

Tina Rubinstein — Sat, 02 Feb 2013 02:21:56 +0000

Four months ago I found out that I had CLL Leukemia by a yearly blood test. Fortunately for me, at this time, I am in stage 0. I do not take this lightly and so I researched everything that had to do with CLL and I found you. Your blog, your shows on youtube, I bought your book. You have given me much hope for the future and insurmountable knowledge about this disease and what to expect. I call you my Guru! So please take care of youself and thank you for all the help you have given to so many.

Comment on Why the “Big Data” Story is Bigger than Lance by Pamela Schilz

Pamela Schilz — Tue, 22 Jan 2013 15:41:28 +0000

I agree. LIVESTRONG is much more important than any one man. Even if that man is the founder. I too choose to move on and spend my precious time looking toward the future and praising the people who truly care about those of us with diseases and are working hard to find a cure. Big Data sounds fascinating and I hope that more people will look beyond the privacy issues that concern them and look at it as a way to help all of mankind. We’re all in this together and most of us won’t leave this world without some type of ailment, illness, etc.

Comment on The Triumphs Over Illness You Don’t Hear Enough About by John Negus

John Negus — Wed, 09 Jan 2013 00:35:23 +0000

Hi Andrew. I agree with your assessment. I have been through two courses of chemo over twelve years for CLL plus two years of weekly blood transfusions. It is only in the last six months that my friends’ nagging me to write about it finally has me working. My main reason for my blog is to give someone who is facing CLL some idea of what to expect and to offer some insights about how to cope. My blog is at http://brizziej.blogspot.com.au/p/cll-journey.html.
Keep up the good work.
john Negus

Comment on The Sudden Death of Randy Shirley, a Leukemia Loss by Paul codling

Paul codling — Fri, 21 Dec 2012 22:14:59 +0000

I join his group this year very helpful and although I did not know well we did talk on FB as friends and was always helpful towards everyone,not sure how you can fill the large gap!

Shocked! As I only talked to him on FB chat as he was doing his trail!

Paul Codling
U.K.

Comment on The Sudden Death of Randy Shirley, a Leukemia Loss by B.J. Welborn

B.J. Welborn — Fri, 21 Dec 2012 14:07:26 +0000

Insightful comments, Andrew, especially to people living with chronic leukemias. I sometimes think people assume we’ve got it licked and have no grounds for questions or complaints.