Not dying was a good plan, but how to navigate the future is the next challenge

[nash2]

I appreciate that I have achieved remission with my cancer and I was thinking about the fact that my liver, even though I have cirrhosis, managed all of the chemo drugs I've had pretty successfully. In our patient groups we often see people who die quickly when a second problem appears.

As a vote for exercise, one thing I credit my success to is that I played racquetball 3 times a week for 30 years. I lost my way and became obese in later years, but I believe that a history of activity gave me a strong foundation. A good argument for activity at any age.

However, that wasn't the subject of this blog. Having not died, I think about what tools I might use to continue having only casual conversations with the angel of death. One of the promises of technology is known as precision medicine. Can we tailor our medical care as rifle shots at disease rather than the carpet bombing that is mostly what we have today?

To explore that a bit, I contacted Regeneron, a leading biopharmaceutical company that has made significant investments in precision medicine. Their focus is on developing revolutionary therapies through gene therapy and precision targeting of genetic drivers of disease.

In talking with them I was surprised to learn that they don't really focus on sick people. They are usually searching for the things that keep people well. For example, in HIV research, scientists discovered that some individuals have a genetic mutation that makes them resistant to HIV infection. This insight has contributed to the development of effective treatments for HIV.

I applaud, Regeneron as it is at the forefront of the precision medicine revolution. They are leveraging their expertise in genetics and drug development, to bring innovative, targeted treatments to patients. The fact that this works is demonstrated by the variety of drugs they have brought to market. Such as:

Eylea, for wet age-related macular degeneration

Praluent, for high cholesterol

Dupixent, for atopic dermatitis

Libtayo, for skin cancer

Regen-cov, for covid-19

They have a robust research pipeline with one branch focused on liver disease. The Fatty Liver Foundation is helping them understand patient needs as they expand their research into an array of chronic diseases.

That is all very interesting, but I started out to talk about my approach to my personal future as a chronic disease patient. I believe precision medicine will be our future and a cornerstone of that will be genetics. So what to do? Naturally, I had my genome sequenced. Amazingly, whole genome sequencing costs $400 today. The advancement of science is breathtaking.

So what did I learn? Admittedly, we are in our infancy with genetics. In my case, I learned that I have a pretty robust genome. Many thanks to all of my ancestors for that. Apparently, you can combine fairly low risk genetics with a history of exercise and you can overcome some of the ravages of our modern lifestyle for a while. I did learn that I have a risk of heart disease and psoriatic arthritis. I'll be talking about those with my GP soon. Thinking about the future, I learned that should I ever need a blood thinner, I have an abnormal response to warfarin. Little things like that can be life savers and more research is coming in all the time.

My personal strategy is to combine the traditional lines of research with the advancing precision medicine tools to find those strategies most likely to let me stick around on this rock. Diet and exercise will no doubt always be core tools, but details matter when you don't have a lot of reserve capacity in your organs.

Like most of us, I became too soon old and too late smart, but I do hope to leverage our modern knowledge into a good long run into these last two decades of my life. I'm only 82 and there is lots more to do.

[MINTVCX]

Can I ask if your Gilbert's syndrome was any problem when you had your chemo drugs? I know when you have this some medicines are metabolized differently by your liver (not all).I am asking because Gilbert's syndrome is also genetic condition.

"For example, you need to avoid medication or drugs that inhibit the UGT enzyme or impair the breakdown of red blood cells, such as:

Atazanavir (Reyataz®) and indinavir (Crixivan®) used to treat HIV infection

Gemfibrozil (Lopid®), that lowers cholesterol

Irinotecan (Camptosar®), that treats advanced bowel cancer

Paracetamol, which is partly metabolised by UGT so you may want to try a different painkiller

Statins are only partly metabolised by the UGT so they are safe in most people with Gilbert’s syndrome"

[nash2 Partner in reply to MINTVCX]

I didn't have issues. My bilirubin was never very high and none of the drugs caused an issue

[Clock01]

Nash 2

What an interesting post. I used to feel as you do.

Over the last few years though I have sadly learned more about how research is carried out, how subjects are dishonestly prescreened, and how influential some companies have become in influencing nations' own drug approval bodies and also the most influential medical journals by funding them often up to 80% . Tat does not lead to honest evaluations.

It's not that all the individuals involved in research are bad, but the companies aim is to make profits not to improve the health of us all. These are not really compatible aims.

Probably worst is dishonestly and deliberately using absolute and relative risk in results to make them sound far better than they are. Look also at NNTT (numbers needed to treat).

I'm sure there will be more, good development that you will see in the future. I know it's easy to moan and that I look to modern medicine to help when I am ill. But I used to do it with far more confidence than I do now.

Best wishes for your continued good health. x

[nash2 Partner in reply to Clock01]

There are plenty of villains wherever big money is rolling around and there are bad actors in pharma. However, in my role I deal with people throughout the system and there are more people of good will than there are scoundrels. The bad actors have too much power when they get themselves into a decision making position and that taints everyone. My sense of things is that insurance companies and prescription benefit managers are our greatest enemies. The drug companies, at least, are trying to make something that will benefit people. The middlemen are just trying to rake obscene profits through manipulating the system. They are the real bloodsuckers driving costs out of control.