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University of Chicago

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Excited to be at U of C since 7am
Today was an exciting, slightly overwhelming, but very hopeful day.  We met with Dr. Jakubowiak, a leading researcher and specialist of Multiple Myeloma at the University of Chicago.  The appointment was purely consultative but it gave us an opportunity to hear a second opinion, and one that is incredibly educated and well-versed in Multiple Myeloma.  From the beginning of the conversation it was very apparent that is he is on the leading edge of medicine and has access to a tremendous amount of studies, trials, and other research.
He began our meeting with telling us that he recently attended an international MM conference where they used "the C word..." Dr J being in the camp that Multiple Myeloma is curable.  This positivity and confidence set the tone for the rest of our 1.5 hour long conversation.  While attempting to spare you all the details and in an effort to keep my report the most accurate, I will simply highlight some of the information we received.
 There are two major changes to Matt's current treatment plan that he is suggesting:
1. He is suggesting that Matt's doctors (or he, himself) change Matt's chemotherapy drug that he receives by injection to a new drug called Kyprolis.  While there are side effects to this new drug they seem very minimal and pretty comparable to the chemotherapy Matt is currently receiving, Velcade.
2. The second change or difference of opinion was regarding Matt's transplant.  He is recommending only one self-donated stem cell transplant (woohoo- the secondary benefit is that there wont be a dilution of Matt's ninja cells), compared to the other oncologists' recommendation for two, one self-donated and the other donated by a family member.  He explained that the risks greatly outweigh the possible benefits of the second transplant and that there is little research to support taking this risk.

He suggested the following plan and provided us with a lot of information from his current clinical trial to support the effectiveness of this plan.
* Matt would continue on to his 4th cycle, beginning at the end of October (either with his current medications or with his recommended change - depending mainly on insurance) and ending in mid-November.
* Matt can continue his secret life as a ninja.
* 4-5 weeks after Matt finishes his 4th cycle (approximately mid-December) they would begin harvesting stem cells and begin the transplant process.  We didn't get a lot of information on this process quite yet.
* After Matt recovers from the transplant he would continue on the  *new* treatment regimen with the new medication, Kyprolis for 4 cycles.  After those 4 cycles they would reevaluate and possibly lower his dosage, yet continue treatment for another 10 cycles.  So a total of 14 cycles.  Each cycle is 28 days so if you do the math, it will last over a calendar year.

Dr. Jakubowiak was very firm in his belief that "hitting it long and hard" was the best course of action, especially with a patient as young as Matt.

After our hopeful and exciting (that's a relative term here) meeting we were able to enjoy a fun-filled
afternoon at the pumpkin patch with the kids.  It was so nice to relax and enjoy time as a family.  Matt has had a pretty tough couple of weeks, physically, after receiving his first dose of bone strengthener, so it was nice to get out and enjoy some time together.

Thank you again for all your support and encouraging texts / calls / emails / cards / visits.   While the news we got today is encouraging, there is still going to be a lot of hard times ahead, both physically and emotionally.  So keep those good vibes coming!

All our love,
Matt & Mandy

*This post has been edited / revised by Matthew himself

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