Hooray for Velcade!

Just a short post.  I am half-way through my second round of Velcade, and the results have been terrific.  Here is the picture:

In September my Free Lambda reading had risen to 170, so they decided to put me back on Revlimid, one of the 3 drugs that worked so well in the summer of 2012.  At the start of November when they started the Revlimid they took another reading, just for a baseline.  It turns out the baseline was 435, what looked like a spike up at the time.  The Revlimid did bring it down a bit, but it mostly went sideways.  Then in April it really spiked, up to 988.  So clearly Revlimid had ceased to be effective against my disease.  Back in June of 2012 when I was first diagnosed with Multiple Myeloma, my Free Lambda reading had been 1300, so this was not that much lower.

My oncologist decided to add Velcade, which attacks the cancerous cells in a completely different way.  It blocks the operation of an enzyme that facilitates the removal of waste, so the cells are overwhelmed by their own wastes.  What a way to go!  At any rate, it has been remarkably effective, resulting in the latest reading of 140, which is the lowest it has been since last September.  That is still 5 times the max of the normal range, but if Velcade's effects continue at this rate, the normal range looks to be attainable.

Way to go Velcade!

That was the race that was

A week ago today 13 of us ran/walked the MMRF Race for Research at Carson Beach in South Boston.  Thanks to all you supporters, Greg’s Legs was the 8th highest fund-raising team, so we had our own tent.  Here are the some of the runners/walkers before the race:

And here are some more of the runners/walkers after the race.

Left to right standing: Andrew Jones, Laurie Proulx, Mary Littlefield, Phillip Elmer-DeWitt, me, Arnie Epstein, Carolyn Zettler, Jack Zettler, Tyler Jones, Jessica Jones (holding Tyler).  Kneeling behind the strollers or in the strollers: Gabriel Jones, Emma Jones (with the hat), Barbara Jones, Margo Jones, Jack Jones, Bridget Quinn, Brian Jones, Brendan Jones.

You will notice that the big difference between the before and after pictures is the addition of jog strollers and a bicycle.  That is because the families with children had trouble getting all the ponies moving early enough to make it on time.  Actually they were at the location on time, but there was a backup in parking, so they didn’t actually make it to the starting line until well after the start.  So far after the start, that the race directors had already turned off the “start” detection function to switch it to the “finish” detection function because the fast runners were within a mile of the start/finish line.  So our boys and their families only had the time since the start of the race, not their elapsed time.

Everybody had a great time.  It was warm enough to run without leggings or a jacket, but the MMRF T-shirt over a sweatshirt was just about right.  There was a good crowd.  Probably 1500 runners/walkers.  We even had a few medalists in some obscure categories:

Margo, who finished first among the above group, came in 2^nd in ladies 65-70.  Greg came in 1^st in men’s 70-99.  [The second place finisher was 5 seconds behind me!]  Barbie was 2^nd in ladies 70-99.  Barbie & I even arrived early enough for me to make the Living Proof photograph.  That is a group picture of all the people at the race who have Multiple Myeloma. 

Multiple Myeloma patients get a special color t-shirt, and I believe I was the only one with a purple t-shirt running the race.  In total Greg’s Legs raised $7,537.20.  That is far more than we have ever raised in the past.  Thank you all very much.  If you haven’t donated, it’s not too late!  The website is still open, accepting donations: support.themmrf.org/goto/GregsLegs.

Meanwhile my own personal bout with Multiple Myeloma continues to have some drama.  In my last blog, I showed the graph of my free lambda readings as of late January:

We were all worried about the spike of 450 and were hopeful that Revlimid + Dexamethasone would bring it under control.  Initially it did bring it down, but then it seemed to bounce around just less than the 450 spike.  Well, Multiple Myeloma and its free lambda readings had some surprises in store:

A spike of 988.4 certainly put the earlier spike of 450 to shame.  And it convinced us all that Revlimid was no longer effective in treating the disease.  I happened to have a pretty severe cold at the time of the 988.4 reading, and my oncologist said that it may have affected the reading.  They changed my treatment to put me back on the 3-drug cocktail that worked so well in the summer of 2012: Velcade, Revlimid, & Dexamethasone.  Basically this just adds Velcade to what I was taking already, but so far the new readings have been significantly reduced.  I have been feeling good, in spite of the dire implications of the free lambda heights. 

The latest little bump along the road happened this past Wednesday.  I noticed that I was peeing wine.  Red wine of a rusty hue.  Again, no pain, but an odd symptom.  I notified the oncology team, who requested that I come into Beth Israel.  I did so, and they took normal blood tests + a urine sample that was still dark.  By this time most of the hospital was shutting down, so they sent me to the emergency room.  Again, more tests and lots of waiting.  In the end I have had multiple ultrasound tests/images of my bladder + kidneys, but they have not found any obvious cause.  The next day everything was back to normal, so they may never know what caused it.  Maybe passing a kidney stone, but usually that is accompanied by pain.

The race was lots of fun, and we raised a good chunk of money for MM research.  My experience with Multiple Myeloma shows that they do not have a cure for it and that the drugs used initially to fight it eventually become ineffective.  So it is important that research identifying new drugs and treatments continue so that there are alternatives when those initial drugs lose their effectiveness.  Thanks to all of you for helping to fund a small part of that research.