Next Steps

I wanted to share with you more about the doctor who is treating me, Dr Scott Lunin. It appears that he reads this blog, so this is a good way for me to communicate with him (and you) and express my latest thinking and concern. (Nice pic Doc...I got it off your website.)

I have to say Scott has been extraordinary. I had a nose bleed yesterday, and he was immediately on top of it. I let him know I had a nose bleed by e-mail (Yoko insisted) and he immediately replied back to me on how I should take care of this and the possible cause. It may be from the chemo or it could just as well be from my "prying" fingers. (I am stuffy and it has been very dry around here lately.) Scott later called me just to check on me. It is obvious he is paying attention and cares about patients he is treating. It gives me confidence that I am getting the best care from a doctor who is truly concerned about my well being. I hope my clients feel about me the same way I feel about Scott. He's terrific.

I find it extraordinary that Scott is calling me at all hours of the day and night to check on me or to discuss my case. It would be one thing for him to call if were sick and looking for help; but I have really been quite fine -- if not improved -- throughout treatment so far. I have only two chemo treatments to go and 14 radiation treatments. I weighed in today at 151 lbs., so I GAINED weight this week. Scott has been very pro-active in treating me and thinking about what can or should be done.

One of the things I asked about and Scott is giving serious consideration to is what the "next steps" should be. Assuming surgery is out -- what is the next best course of action? To his credit, Scott is reaching out to colleagues he respects in the medical community to consult with on my case. It is very reassuring to know that he is using the resources at his disposal to get the best minds available weighing in on my case.

This morning he called me on my cell, because he was about to talk to a Dr Frank Fossell at MD Andersen Cancer Center in Houston. Dr Fossell is a leading thoracic surgeon who specializes in lung cancer only. I could not join the conversation because I was sitting with clients myself. I think Scott's thinking was it would be better if I heard this from the horses mouth...but oh well. In fact. Scott wanted me to hear the discussion so I would have a better appreciation of the complexity of the issues and biology involved. My nature is to simplify and estimate in order to find solutions to complex problems. (I learned this trick in college from Luther Liggett.) I'm not good with complexity.

At 8:30 tonight Scott called to relay the gist of the conversation with Dr. Fossell. We talked until about 9:15. I thought I would memorialize what Scott and I discussed here. That way, if I got it wrong or am misinterpreting or misstating what Scott said, he can straighten me out when I see him on Friday.

The real question I have is -- assuming this thing progresses as it "normally does" -- what would be the next step. The answer is that there is no "normal progression." Scott tried to explain how complex the biology is when it comes to cancer. That you can have two people -- subjected to identical treatments -- and end up with polar opposite results. In one case the cancer (tumor) melts away; in another case it does not or worse, it grows or metastasizes during treatment. These are opposite results and no one can say with any certainty which outcome I might have. No one knows why you get two polar opposite results -- because they don't fully understand the cell biology of cancer. What we are left with, therefore, is a trial by error approach -- to see what works. Try this -- try that...

The whole idea of re-staging is to measure the success or failure of a given treatment regiment. Until we remeasure, there is no saying what next steps should be.

I explained to Scott that I deal primarily with probability and outcome. I don't know what the stock market is going to do on any given day, but I DO know that I have a one in three chance of having a positive year, and that the odds of having positive returns improve with time. My concern about next step has as much to do with planning my life for the next three months as it does with anything.

I further explained to Scott that my thinking about this is that, even if we don't know what the outcome will be, we should know a range of outcomes from most likely to least likely. The question is should I liken the tumor "melting away" to winning the lottery? Sure it could happen, but I am not betting my financial future on having that lucky ticket. Now if he tells me that chemo radiation results in the tumors melting away 50% of the time, that would be encouraging, but I have gathered just from the survivor evidence (high morbidity) that that is certainly NOT the case. I think Scott conceded that the "melting away" outcome is possible but not a likely outcome.

Can we get enough shrinkage that surgery becomes an option? Again, I think the honest answer is "probably not." We are not ruling surgery out entirely and we are certainly going to ask again and re-confirm that surgery is definitely off the table. I think, at this point, that the likelihood of surgery happening is remote to none. The tumor is simply too "involved" with the central chest for this to be a realistic hope. But it does not hurt to ask one more time.

What does that leave us? Radiation can only go on so long before it does more harm than good. After receiving 70 grays, this tumor is cooked and I confirmed with Dave Rice that we would not look to any further radiation on the tumor beyond the definitive treatment we are currently doing. To do more risks harming good tissues in the lung, heart, etc.

If you eliminate radiation and surgery, all that is left is chemo. Scott and I agree that we will probably need to to look at some continuing chemo regiment. I think that even if the tumor "melted away" we would still be looking at further chemo.

Scott explained that the chemo I am currently getting is to treat the locally advanced tumor and is a "definitive" chemo radiation treatment, meaning that this is currently considered the the most effective treatment for trying to control this particular lung cancer. We have to understand that "most effective" does not necessarily mean "effective." That is to say, it may or may not work. I told Scott that I do not want his medical decisions to be influenced by my desire, for example, to continue working or not disclose my condition to clients. My first priority is to do what is best to treat the cancer; everything else is secondary. He assured me that his dosage or treatment regiment is not influenced by such factors. He is doing what is in his judgement the medically sound thing.

Once we complete the definitive treatment, which is really aimed at the lung tumor itself, we should probably look at a continuing treatment regiment that is optimized for systemic treatment of cancer. That is to say, to try and stop the cancer from spreading or growing elsewhere. Scott is considering a number of drugs and regiments. Dr Fossell thinks it would be reasonable to perhaps provide me with the same treatment that I might be provided post-operatively were I to have surgery. The problem Scott has with this is the "minimal" improvement in longevity -- perhaps 5% -- for the effort and risk of side effects. Whatever next steps we take will have to consider the risks to my general health. That is what will make this a hard decision.

At the end of the conversation, I think my takeaway was that continuing treatment by chemo starting in February is the most likely scenario. That we are likely to look at a different mix of drugs to focus more on the systemic treatment; that whatever the case, the treatments early next year will likely involve more side effects, lower blood counts, the need for shots to counteract the chemo, and other measures, and will not likely be as "kind" as this first round of chemo has turned out to be. I may be looking at weekly (or more frequent) treatments.

It was a helpful talk and I really appreciated Scott taking the time to call. I am going to have to plan for a more "severe" regiment to come this winter and spring. The only thing I want now is to be well for my daughter Paula's wedding on June 7th in California.

Bring it on Scott ....I'm ready.