March 13, 2017
Well, it has now been almost five months since I last wrote. At least it’s not a year like last time! Still a lot has happened in these 5 months.
The first thing to note is that this coming March 23rd will be the fifth anniversary of my diagnosis with myeloma. Five years ago, upon learning of this diagnosis, I naturally spent some time on Wikipedia looking this up. I wasn’t happy to see that the average life expectancy was only three years. I am happy to report that that number is now considerably higher at 10 years and getting longer every year. There remain five therapies that I still have not tried: pomalidomide (Pomalyst), daratumumab (Darzalex), ixazomib (Ninlaro), panobinostat (Farydak), and elotuzumab (Empliciti). There are also multiple clinical trials testing other agents, that have been approved for other cancers, to see how well they may work in myeloma.
Over the last couple of months, my numbers have been creeping higher – most recently at 1.14 as of February 13th. Warren, Kathleen, and I reviewed the situation and decided that I would return to the original dose level of the carfilzomib (Kyprolis) over the three week cycle and one week off. And, since my last PET/CT was on March 26, 2015, Warren thought it would be useful to have another to confirm that no skeletal involvement had started up again with my uptick in numbers. I have very happy to report that the PET/CT was clear!
I am still walking regularly with Kathleen and I have been able to keep a pretty steady schedule of about 7 miles a week (over 3 days) at an average speed of about 3.1 to 3.2 miles per hour.
My next myeloma series samples will be taken later today and we’ll see how things are going when I meet with Warren next week. In most any event, (unless things go crazy high) I’ll remain on this therapy for a while still. Warren has told me that he has some patients who have been on carfilzomib for over two years.
This weekend, Kathleen and I are attending the International Myeloma Foundation Patient and Family Seminar in Boca Raton, FL. We will be most interested to hear what is coming next for therapies.
Thank you Lord Jesus for my healing and for all the healing received by those for whom we pray.