Time flies, and just this morning, I realized that I have not posted anything for several day. The weekend was busy, with motorcycle meetings, and runs, and then spending time with my favorite person, my wife. So today I will try to bring myself up to date on how my life is going.

I have been feeling extremely good this last week, I am not sure why, but thankful that I am. I sometimes get a pain near my spleen, but it is temporary. I have no bruises, and the lymphnode on the left side of my neck seems smaller than usual. I did start juicing two weeks ago, and I have a 12 oz. glass of juiced vegetables every morning. I don’t know if it helps with CLL, but I am quite sure it doesn’t hurt. Vegetables and fruits, was what we were told to eat, when man and woman were first created (Gen. 2:16).

The journal Blood published an article on long-term survival statistics for CLL patients. This article is from 2008, so the survival rate may be even higher now. I have not been able to find a new statistics yet, but when I do, I will post it.

This detailed statistical analysis of CLL patient survival is based on data from the SEER (Surveillance, Epidemiology, and End Results) Program.  The SEER program collects population based data from cancer registries in Connecticut, New Mexico, Utah, Iowa, Hawaii, Atlanta, Detroit, Seattle-Puget Sound and San Francisco-Oakland.  While it does not cover the whole of USA, SEER includes about 30 million people in its scope and therefore has pretty powerful statistical validity.  Roughly 21,000 CLL patients (15 years or older) were included in this specific study, time frame was 1973 – 2004.  For those of you who like to have your facts as sound-bites, here is the cheat-sheet version of the findings reported in this study.

CLL Patient Profile Over Two Decades

  • The study looked at 21,000 adult patients with CLL (and no previous cancer diagnosis), over the time period of 1973 – 2004.
  • The single most common age group diagnosed with CLL was 70 -79 years old.  Roughly 30% of the cases registered fell into this age bracket.
  • 60% of the cases were men, a statistical difference that persisted over the whole time period of the study.
  • Put these two facts together, and it is hard to deny there is some truth to the often repeated and deeply annoying comment that CLL is an old man’s disease.  However, another way of looking at the same statistics is that a goodly percentage of the patients were younger than 70 years and fully 40% were not men.  And I am dead certain all of the patients were young at heart.  So there.
  • Comparing the time frames 1980-84 and 2000-04, the number of registered CLL cases increased by 20%.  But before you jump to conclusions, the authors point out that the number of CBC blood tests done as part of routine annual checkups has increased dramatically in the two decades between, and this may be the reason why we are now seeing more cases of CLL that would have gone undiagnosed in the earlier time frame.  It is a case of looking for problems.
  • Even with the higher level of routine monitoring of blood counts, the authors believe CLL is an under-reported cancer.  The actual number of cases may be higher than reported by SEER.  This may be due to the fact that majority of CLL patients are not treated at diagnosis.  Local oncologists sending in their data to SEER registries may overlook counting patients that are in Watch & Wait mode.

When all is said and done, this is what matters most to patients and their families: are our guys living any longer now than they did back in the 80’s?  The following is how survival statistics have changed from the 1980-84 time frame to 2000-04. For CLL’ers, when diagnosed under 60 years of age, the survival rate for ten years, went from 53% to 67%, and for those diagnosed between 61-69 years of age, the survival rate went from 52% to 62%.

As you can see, survival improved between the two time periods, our guys are living longer today than they used to back in 1980’s. But there is no flattening of the curves either. This means patients continue dying over time, there is no point at which the mortality risk of CLL goes away.  It is not like all the guys who are going to die are done with it in the first few years, and the remaining bunch are long term survivors that have put this whole messy business of cancer behind them. CLL is a gift that keeps on giving – this is what makes it an incurable disease.