2020 MMRF 5k
Greg's bout with Multiple Myeloma
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3y ago
(Greg's son Brian taking over the blog here.) As longtime readers of this blog will know, Greg organized the team Greg's Legs every spring from 2013-19 for the Multiple Myeloma Research Foundation (MMRF) annual fundraising 5K Run/Walk.  His efforts raised over $48,000.  Thanks to all who have donated in the past, your contributions really add up! 2020 is different in many respects.  This year's 5K will be held this Saturday (9/19) as a virtual event.  The fundraising, however, is real!  Anyone who would like to join the team is welcome to do so, and all are encouraged ..read more
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The End of the Struggle
Greg's bout with Multiple Myeloma
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3y ago
Hello faithful followers of Greg’s blog, As many of you may have heard, Greg is now free from the ravages of Multiple Myeloma, having faced this challenge as he did all others in his life – with strength of will and character, with dignity, with curiosity and involvement, with a desire to benefit others by sharing his experience of the disease through this blog. I have just reread his last blog,  posted July 28, which I composed as he was using his energy for other things. Just revisiting all those terrible conditions he endured in the final weeks makes for incredibly painful reading, a ..read more
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Greg’s Blog – July 28, 2020
Greg's bout with Multiple Myeloma
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3y ago
 Greetings to all who follow Greg’s blog, in which he recounts the many travails dealing with Multiple Myeloma, first diagnosed in 2012.  I (Barbara) am writing this update, which he will proofread and edit, a reversal of our usual roles, but at the moment, he does not have the energy to sum up what has happened since the last blog, posted 5/19.  We did make it to our Cow Island cabin in Lake Winnipesaukee over Memorial Day, accompanied by our son Brian and two of his three boys.  It was a major challenge for Greg to negotiate the rough path up to the cabin using his vers ..read more
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Bad News
Greg's bout with Multiple Myeloma
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4y ago
Well my Free Lambda has achieved a new record: 8171, a 28% increase over the prior record of 6399.  The current record reading follows two treatment-free weeks, as the current schedule involves three weeks of treatment, followed by a week off to allow my body to recover from the accumulated effects of the treatments.  At the end of my “time off”, I was feeling better, as I always am pretty beat up by the conclusion of the three weeks of treatment.  But apparently the disease managed to go on the offensive as well. Barbie notes that the highpoints of the graph form a remarkabl ..read more
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More of the Same
Greg's bout with Multiple Myeloma
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4y ago
I feel remiss in that it is more than 2 months since my last blog post.  I’ve been waiting for good news to post, but it just hasn’t happened.  The current treatment has prevented my Multiple Myeloma from racing away, but it hasn’t brought the numbers down either.  Here is the latest graph, as of last Friday: The latest Free Lambda reading is 4385, which up until last October would have been a new high.  There is some suspicion that the last 2 readings may be inaccurate, as tests for other patients have come back unexpectedly high.  But my bones feel as if the disease is rampant, so I a ..read more
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New Treatment
Greg's bout with Multiple Myeloma
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4y ago
Evolution is pretty clever.  While a certain treatment for multiple myeloma may be effective for a while, eventually the disease figures a way around it.  Basically, the law of large numbers works against you.  A single drop of blood contains 10 million blood cells.  So, when a treatment kills 99.9999% of the bad guys, it still leaves .0001% that it did not kill.  That is 1,000 in a drop of blood.  Science.answers.com says there are 120,000 drops of blood in the human body.  So that means that 120 million of the bad guys survive the treatment.   And those proliferate to become the new normal ..read more
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New Developments
Greg's bout with Multiple Myeloma
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4y ago
Suddenly it has been 2 ½ months since my last blog post.  In part that was because I didn’t have a clear story to tell.  My free lambda numbers have been bouncing around without a consistent direction.  Here’s the latest: Yes, they are gradually coming down, but not infrequently they go up.  And if I had any of the recent numbers back in the spring, they would have been close to new records. I complained that my left leg had stopped healing, and it felt weak.  So, they decided to give me radiation in the left hip and femur.  After initial prep where they put tattoo spots on the target are ..read more
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Still at Sea
Greg's bout with Multiple Myeloma
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4y ago
It has been 2 1/2 months since my last post, which seems like a long time.  I have kept awaiting definitive news on my disease, only to have a number of weird reports that leave things even more up in the air.  That is still the case, but I thought I would simply document the current state of play. Back in November, when I wrote my last blog post, I was still hoping the second dose of CAR-T Cells would be the magic bullet.  Well, such hopes are no longer sustainable.  Yes, I am still feeling good, but the numbers tell a different story.  As of the last post, they spun a mixed, contradictory s ..read more
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The view from Feldberg 7
Greg's bout with Multiple Myeloma
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4y ago
My term as a hospital captive is soon going to come to an end.  Monday, 10/8, I will be partially released - from the security of the hospital, to the luxury and freedom of The Residence Inn at Fenway, a hotel (pretty fancy) that is a 15-minute walk from Beth Israel.  In effect I will be on parole.  Not totally free in that I must have a responsible adult with me 24/7, but on the outside.  I will have many appointments at the hospital (6 in 16 days) and I will be accompanied so that if I should have a CRS event, somebody can get me to the hospital for treatment.  But I will be free to enjoy wh ..read more
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The Wrong Direction
Greg's bout with Multiple Myeloma
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4y ago
I just reviewed my blog post of September 13.  I wrote about a Free Lambda reading of 2752 being a new record.  Well a reading of 4879 on 9/24 sure put that to shame.  Luckily, the next reading on 10/1 was 2076 lower at 2803.  That gave an indication that the Elotuzumab was finally kicking in and having an effect.  But the latest on 10/15 was 2970, an increase of 167 and going in the wrong direction.  I wonder if the Elotuzumab has lost its effectiveness. Here is the latest graph of the last year: Whereas in the spring 2 doses of Elotuzumab brought the Free Lambda right down, the lat ..read more
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