It is in this time following approval where we can realize that we have at first made two steps forward in the treatment of a condition, but then have to take one step back as we see side effects become apparent as the drug is used by a wider population.

There was one example in the New York Times today as some older men are having complications from cataract surgery if they’ve been taking the drug Flomax for urinary flow problems. I hate to poke fun, but that means those virile men in the television commercials where they are river rafting without a care in the world may, some of time at least, need glasses because while their urinary problems were better their vision may have become worse. The drug company says it has always advised patients to talk to their eye surgeon about their use of Flomax and have the surgeon consider a different technique to reduce the risk of a complication. Now experts are saying this may not be enough attention to a real problem.

I just heard about another example of a side effect: severe acne in some cancer patients who take one of the new epidermal growth factor inhibitor medicines. It seems epidermal growth factor is important in healthy skin cells and not just cancer cells. The concern is, while the new medicines can really help fight cancer, the skin problems that go with them have to be treated too, and treated early to prevent infection or such severe side effects that cancer fighting treatment has to be suspended and the cancer patient’s prognosis suffers because of it.

So, as I like to say, there is no “free lunch” with powerful medicines, and sometime we don’t know the full picture until they are approved, and out there for thousands of patients and doctors to use. That doesn’t mean it is not medical progress. It is medical progress tempered.

I know from an interview conducted this week with a dermatologist who specializes in helping cancer patients that the skin problems from the new cancer drugs can be managed. And I am betting millions of men who take Flomax can still get the eye care they need when they need it. This comes with more refined treatment plans based on experience. Two steps forward, one step back. It is to be expected.

My advice to patients is to read the fine print as you take a new medicine. There is always a “package insert.” Were eye issues observed with Flomax in the trials, yes, I believe so? How about skin problems with the EGF inhibitors? Yes, there too. So we patients should prepare and force a discussion with our doctors as we take new medicines to probe how vigilant we should be about side effects and how to limit them. It’s one more time when, like it or not, we have to be a strong advocate.

I welcome your comments at questions@patientpower.info and, as always, I remind you that knowledge can be the best medicine of all!

Wishing you and your family the best of health!

Andrew

A few days ago we read of the death of Tony Snow from advanced colon cancer. Although I never met him, Tony seemed to be an honorable journalist and political commentator as well as a recent White House press secretary. He was a conservative talk show host carried on KVI/Seattle, the same station that carried Patient Power for three years. So I would listen to Tony, found him to be thoughtful, and empathized with him when he was diagnosed with cancer.

When the news came out about his diagnosis the subtext was the advanced stage suggested a less than great prognosis. Now our fear for Tony has come true with his untimely death. While there are people living with advanced colon cancer for some time and drugs like Avastin have lengthened survival, for most people, time is still short.

The key to beating colon cancer is not developing it – a healthier diet, a regular screening to catch precancerous polyps and snip them out. Such early detection did not happen for Tony nor did it for my mother, who died of colon cancer after a four and half year battle. We need to push screening since colon cancer is preventable.

At the same time as I was hearing of Tony Snow’s death I was learning of fellow passenger Steve Kirsch’s fight for life. Steve is a friend from North California of my traveling buddy Francis La Poll. According to Francis, Steve is one of the technology whizzes who developed the computer mouse. He is very smart, very philanthropic; apparently very well off….and at age 50 was diagnosed with what has been an incurable, fatal condition, Waldenstrom’s macroglobulinemia. At first I thought his diagnosis would be kept under wraps. But, to the contrary, Steve is very outspoken about it and we are linking to his web pages about it.

At dinner one night Steve quizzed me about my treatment for CLL. He knew about all the drugs, and all the big name doctors. Apparently Dr. Steven Coutre, a noted hematologist at Stanford, is one of his physicians. But like a powerful patient Steve didn’t stop there. He searched the country for experts and even more, because he is a man of wealth, he decided to fund research in his condition at the Dana-Farber Cancer Institute in Boston.

Around the dinner table tonight his close friends expressed confidence Steve’s support could lead to a cure for Steve and there others who have this rare but scary blood related cancer. I hope they are right.

As I have seen with my CLL, the textbooks now appear out of date and the latest research is making tangible inroads. First as one patient’s story, then as data on a group – the “natural history” of a diagnosis can be re-written.

It appears that is the case for me with CLL. I hope it is the case for Steve Kirsch, and I only wish it had been the case for Tony Snow.

Andrew