6/13/14 – Many Options

Before I start writing this post I need to send my best wishes to two families who are very dear friends of ours.  You know who you are and let me say that our family’s thoughts and prayers are with you.  I feel guilty (my friend Miriam says that guilt is an unhealthy, unproductive emotion) but I feel guilty posting of my tsuris when other families are going through difficult emotional times.  I have always said that I could never live long enough to repay the support and generosity that others have shown me.  Posting about my doctor’s visit seems trivial when others are suffering.  Please know that I throw my support to you all 150% but in the interest of updating my status I continue to write.

I saw Dr. J yesterday to discuss the rising Kappa Light Chain number and the persistent M Spike.  As the doc says, there is still some minimal residual disease.  It seems as I said in the last post that I just can’t shake this Cancer thing.  We are going to start another two cycles of Chemo in a week or two.  This is what they call consolidation therapy.  It is very common after stem cell transplant.  I have two options of consolidation therapy.  The first is a new drug called Pomalyst, which is Celgene’s most recent approved myeloma drug.  This drug wasn’t even available when I was diagnosed!  It would be given in combination with a drug called Velcade.  I had Velcade during my first two “induction” cycles of Chemo in December 2012 at diagnosis.  Velcade is given as a shot once per week.  Pomalyst is a pill.  So basically if I choose this route I would have to go to Mt. Sinai once a week for about 5 minutes for a shot of Velcade and take a pill everyday.  Great! – minimal work interruption.

The second option is a study that Mt. Sinai is doing with Velcade.  In this study, Velcade is given without Pomalyst but given orally.  So basically I just take one pill of Velcade everyday.  That sounds great!  The problem is since it is a “study” I would need to go in to Mt. Sinai ONCE A DAY for the next two weeks for blood work.  ONCE A DAY?  I don’t know if I could handle that.

So here is my quandary:  I want to do the oral Velcade but don’t want to drive into the city EVERY DAY (including Saturdays and Sundays) to give blood.  The reason for doing the oral Velcade is that I want to hold back with the Pomalyst.  Why start a new drug?  I would rather keep that in my arsenal in case the Velcade (which I HAVE had exposure to) doesn’t work.  This is a disease where we have to keep the many options we have in our back pocket for relapse because WE WILL ALL RELAPSE.

The getting into the city part isn’t that tough.  I did it for radiation and still worked a full day so I can do it for Velcade.  Besides, the blood work would only take about a minute so it really wouldn’t interrupt anything at all.

Here is another issue into the mix:  If I choose the oral Velcade I wouldn’t be able to start until after July 4th because we will be away for a baseball tournament in Cooperstown and I need to be in NYC for the blood work.  MY GOODNESS!  How do I choose?

What we decided was to take the blood work for the Myeloma panel again yesterday.  If it comes back (Monday) and my Kappa Chains have gone down (from radiation on the hip tumor) or have stabilized I will wait until after the 4th and do the oral Velcade.  If the Kappa Chains have risen again I will start on the Pomalyst right away.  DECISIONS, DECISIONS!

We also started preparing for another step.  I am going to Memorial Sloan Kettering to consult with a doctor there who specializes in allogeneic transplants.  Allo transplants are donor transplants.  When I met with Dr. S at Hackensack he said this was the only way to get to cure.  Put someone else’s cells in your body.  The problem, Dr. S said, is that there is a 15-20% chance the procedure itself will kill you.  This doctor at Sloan, Dr. K, is doing a unique kind of allo transplant called a T Cell Depleted transplant.  Basically it means that they introduce the t-cells to your existing cells outside your body before they put them in.  This reduces much of the risk of engraftment of the new cells.  It is another of the many options available to me.  It is the option we will definitely choose if the Pomalyst or Velcade doesn’t work.  Heck – if it could CURE me I might do it anyway!  You can read more about T Cell Depleted Allogeneic Transplant here:

http://www.mskcc.org/cancer-care/adult/multiple-myeloma/clinical-trials/12-175

Or watch a video on it here:

http://www.mskcc.org/videos/case-study-wt1-specific-t-cell-responses-patient-plasma-cell-leukemia-and-relapsed-refractory-multiple-myeloma

Whatever the case may be – I have a ton of options.  AND – there are always a ton of new drugs in the pipeline ready and waiting.  I will keep everyone posted on the decision – probably will be Monday.  In the mean time keep my friends in your thoughts and prayers today.

Love you all – #bradstrong

3 responses to “6/13/14 – Many Options

  1. Babe! That wasn’t guilt: that was empathy. See what cancer grows! Another silver lining. Love you long time. And, love the battle. It’s like watching Rocky and cancer has you backed into a corner: you don’t care, you sucker punch and keep dancing…that’s my BOY!!!!!

  2. Wow. You are like the Eveready battery. You just keep on going & going& going Thank God . Keep on going!!!!!!!! You inspire all who read your blog. I read the info and watched the video. Love that Dr. He is a fighter for his patients . You have some major & tough decisions to make, but you will fight through this & be like Lacy. REMISSION!!!
    Sending love hugs and prayers Joni& Jeffrey

  3. Pingback: 7/25/14 – The One I Wish I Didn’t Have to Write | bradstrong·

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