Friday, March 28, 2014

Greg’s Legs, Year 2

I haven’t blogged for a while, as life has been pretty normal recently.  As explained in my last blog post, my immune system was not strong enough to fend off colds from my grandchildren.  Since my last hospitalization at the end of December, I have been quarantined from my grandchildren, so I have stayed well.  I have resumed exercising, and I have been feeling really well.  Dr. Levine, my oncologist, said I must not see my grandchildren until springtime.  Well Spring arrived on 3/21, so in spite of the snow still on the ground, I saw the grandchildren.  This past weekend Barbie had a concert on Sunday, 3/23.  The concert was a triumph.  A Tchaikovsky cello concerto and the Brahms Requiem.  Everybody – audience, chorus, and orchestra – agreed that the performance was top rate.  Barbie really knew her stuff, and she got everybody to work together and create beautiful music.  All 3 grandchildren were here for the weekend, and I got to be with them for varying lengths of time.  I noticed significant differences, just in the 3 months since I was last allowed to see them.  Emma in particular is now quite a climber, and if you turn your back on her she is into or on top of something in no time flat.  Actually, as 3-4 days have now gone by, I have started to get cold symptoms.  Nothing intense yet, but proof that I still need to be careful, in spite of the calendar.

In a month I plan to run in the MMRF 5K race in Boston, 4/26.  In a repeat of last year, we have a team named Greg’s Legs participating, either as runners or as walkers.  Please go to support.themmrf.org/goto/GregsLegs to sign up to run or walk with me or to support those who are participating by making a donation.  I happen to be MM free right now, but when it comes back (which it always does) the drugs that worked so effectively in my first encounter with the disease are unlikely to work as well.  The logic of big numbers and natural selection works against me.  The drugs that worked well initially got all the MM cells that were susceptible to their effects.  Probably 99.999% of the MM-affected white blood cells.  But that means .00001 of the white blood cells survived.  Given that there are about 40 billion (4 x 1010) white blood cells in the normal body, that means 400,000 (4 x 105) survive, and some of them are likely to be bad.  And since they survived the onslaught of the drugs they treated me with back in the summer of 2012, those drugs will have little effect when the MM comes back.  So the doctors need to use different treatments for recurrent MM.  The net result is that my chances improve as they develop more weapons to fight the disease.  I don’t mean to be self-centered, but being vulnerable suddenly makes you a big fan of anything that can improve your lot.

Here is a picture of last year’s participants, ranging in age from 69 (me) down to 4 months (Brendan):
  

The race is early on a Saturday in the springtime.  A perfectly level course where you go out for 2.5 kilometers along the curve of Carson Beach.  Then you come back on the other side of a divided highway.  So us slow, old runners get to see the rabbits fly by on their way back, and we haven’t even gotten through a third of the race.  But later we are heading back to the finish line, passing walkers who are still on their way out.  At any rate, it is a good course, a good cause, a fun event, and (ideally) a glorious spring day.  So come run or walk with us and have a great time!

Thursday I had a monthly checkup with Dr Levine, my oncologist.  He gave me a new way of thinking about the disease.  He said all cancers grow at predictable rates, and when the tumor burden reaches a critical level, then the human body is overwhelmed and you succumb to the cancer.  Here is a picture Dr Levine drew (with his hands):
The basic idea is that the cancer grows at an increasingly faster rate, a logarithmic rate.  A lot depends on the units on the time dimension.  For example, leukemia happens to be a fast-growing cancer, so if you kill off 99.99999% of the leukemia cells and set the disease back to the left-hand side of its curve, you only buy a few weeks, as the cancer grows fast enough to reach critical tumor mass in that short a time.

Multiple Myeloma, on the other hand, happens to be a relatively slow-growing cancer.  It takes years to do what leukemia does in weeks.  So my initial treatment and the stem cell transplant, by setting the disease back to the far left of the curve, buys me several additional years.  They don’t know how many because they don’t know how fast my particular cancer is growing and they don’t know exactly how far back they set it.  Furthermore, a mutation may happen that can have negative results.  The mechanism that tells cells they have done their job and they can now die off can get turned off.  Or the rate at which the cancer cells choose to divide can get accelerated, thus increasing the speed of growth.  If either of those things happen, then I will be back dealing with the disease sooner than expected.

Dr Levine did say that the medical profession now has many tools at its disposal to treat the disease, so he did not want to be overly gloomy.  He did not have time to go into exhaustive detail, but he did say that they have good treatment options.  I am a member of the MMRF (Multiple Myeloma Research Foundation), so I get monthly emails from them and a quarterly newsletter.  They are always recruiting for people to join in clinical trials.  They also list the many new drugs they are helping to sponsor and the stage of development they are in.  Recently they have announced an open-source database of people participating in various clinical trials, including not only the results of their treatment but their key genetic information as well.  This is normally information that is held closely by the companies developing the new drugs, so that they will have a competitive advantage.  Clearly the MMRF was powerful enough to negotiate with the drug companies to change their normal “rules of engagement”.  I was certainly a fan of open source software in the computer ecosphere.  Let’s hope that open source clinical trial information will have a transformative effect on bringing new therapies to market.


The message of this blog post is pretty simple: Go to support.themmrf.org/goto/GregsLegs and sign up or donate.  Last year you were incredibly generous.  Thanks, and please be as generous again this year.