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Friday, September 19, 2014


Okay, here are my thoughts.  I haven't been updating this blog often enough, so what should I do?  I have noticed that when I don't have a specific topic to write about, I tend to wait until some inspiration occurs.  That hasn't been happening often enough lately, so I'm thinking about taking a different tack.  I have noticed that if I sit down to write without a real plan and just start typing, sometimes I get inspired along the way.   Maybe this is one of those times. So here it goes.....

....OK, just stick with me here for a minute while I wait for the creative juices to start flowing....

....Well, it didn't work this time.  I still don't feel inspired. Damn!  I was sure this would unleash a torrent of priceless prose.  Maybe I'll just settle for the mundane.

Yesterday I went to the Farber for my iron tests.  The results were inconclusive. Some numbers got better and others got worse, a mixed bag.  I won't bore you with the details, but basically I am still iron deficient.  The upshot is that I have the opportunity to get my iron counts up to normal by taking a one-time injection instead of months of wrestling with those damn iron pills.  I decided to go for it, so on Sept. 30 I will go to the Farber for an injection of 2000 mg of Dextran, which should instantly boost my iron levels back to normal.  It's a 4-5 hour process, but assuming I don't have any adverse reaction, I shouldn't need any more supplements after that infusion.  I'll take a book to read.

I also attended the first session of the Writing Workshop yesterday at the Farber.  Wow!  What a treat!  Amy Boesky is our moderator, a writing professor at BC.  She is so inspirational and challenging.  She gives us a prompt every month based on a poem and asks us to respond to the essential premise of that poem in ten minutes.  What a challenge!  As you know from my previous blogs, I tend to be deadline driven.  Some of my best efforts have come from these quick challenges.  I did OK yesterday.  Most of the group suggested I post my response on my blog, but I'm not comfortable with that. The bigger question is what am I going to do with all of this writing stuff.  Maybe a memoir?  I have been encouraged to consider consolidating my blog posts into a book.  I don't know if I have time for that.  In my last blog post, I used the phrase "I don't have a life".  I got a lot of shit about that from a couple of my readers.  They are right.  I do have a life, and I do have something to offer.  Maybe a book is in my future, but I don't yet know what it would be about.  Amy offered to help me organize it if I ever decide to go in that direction.  Hmmm.

There is a lot  going on in the MM community.  Pat Killingsworth just posted a blog about a recent Cure Talk audio broadcast on the importance of achieving Minimal Residual Disease (MRD) in MM.  Pat was a panel member in this is hour-long session with Dr. Guido Tricot, which I found to be extremely interesting.  Tricot is of the persuasion that hitting MM hard up front and achieving MRD is extremely important in treating MM.  He comes from the Arkansas faction of MM therapists who give lots of chemo, do tandem autologous transplants, consolidation and long-term maintenance therapy.  Their program requires one to take months hospitalized dedicated to the program.  They claim to be able to cure MM with this approach in most low-risk MM patients.  Here is a link to the Cure Talk audio for those who might be interested:  minimal-residual-disease-with-dr-guido-tricot.

The upshot is that Dr. Tricot feels it is very important for newly-diagnosed patients to achieve MRD with their initial therapy, especially for those who are at high risk (e.g., t(4:14)), such as myself.  He eschews the incremental approach to contain the disease and then try to control it later after it relapses.  Once MM relapses, your life expectancy goes into a downward spiral.  Salvage therapies usually don't last long, and then one has to keep trying new drugs to extend survival a few more months.  Of course, there are new drugs out there, but at some point the options run out.

He goes to the extreme of suggesting tandem ASCTs for newly-diagnosed patients, along with substantial chemotherapy drugs, similar to the Total Therapy 3 approach of the Arkansas group.  I'm not sure I go to that extreme, but I agree with him in principal about hitting it hard up front.  I feel so fortunate to have found Dr. Richardson, who subscribes to a lot, but not all, of his approach (mongoose vs. cobra).  After all of the agonizing I went through, I am now confident that my decision to do the ASCT clinical trial was the right one.  I was selected for the single vs. tandem ASCT arm, which Dr. Richardson preferred.  Thankfully, I have not only achieved MRD as shown by the bone marrow biopsy flow cytometry results, but also Stringent Complete Response (sCR) based on continued negative results from my blood and urine tests.  From what I have read, I have a good chance of staying in remission for a long time.  Yay!  But time will tell.

Now see.  I didn't have anything to write about when I sat down at my computer here, but now I have managed to waste your time with several paragraphs of drivel.  I have more drivel I could write about now, but I think you all may have reached your drivel limit.


  1. Bring on the drivel! It's more interesting than most of the crap on the internet anyway :)

  2. Thanks, Jason. I guess I'll just drivel on.