Sunday, May 18, 2014

Not So Fast

My previous post was about the woman with myeloma who apparently went into remission after receiving a massive dose of the measles virus.  Sounded pretty good, right?  Well not so fast my friends.
I've gotten a number of texts and email about this potential game changer. I was excited by it.  We talked to Berenson about it. As we know, Berenson is opinionated, a bit controversial and very sure that his way is the right way and so on and so on. He's also considered one of the top myeloma specialists in the world. That's right, the world.  Yesterday I went to a myeloma seminar put on by the MMRF.  Berenson was the program chair and spoke on a couple of different topics. A few months back, me, Leslie and my mom went to an LLS blood cancer seminar.  That was basically a waste of time, other than cookies at break time. Yesterday's conference was fantastic. I learned a lot. All the speakers were myeloma doctors and all focused on different topics. A couple of doctors made jokes about Dr B and his dogged determination to find a cure and about his steadfast opposition to the stem cell transplant. A doctor from the City of Hope spoke right before Dr B about transplants and as she was being introduced more jokes were made about getting her and Dr B in a debate on the merits of the transplant. Remember, before I saw Berenson, we did go to City of Hope, thinking I'd do a transplant. They denied me due to my kidneys. (and that is something to keep in my mind, when you hear tremendous numbers for transplants success rates (i.e. surviving the procedure) keep in mind that some places are quite selective about who they will transplant, not wanting to impact that percentage of success)  I'll listen to and follow Berenson anywhere.  He's performed a miracle on me.   I talked to a newer patient of Dr B who I had just met the day before in Berenson's office.  He lives in Vegas. His primary oncologist in Vegas actually dropped him when he heard that Berenson was his myeloma specialist. That's bullshit. 
Oh, by the way, Berenson isn't worried about my numbers. But he does want to me to continue on treanda. I handle it well enough so we're staying aggressive.  He also gave me an extra week off, so I will feel tip top for the BolderBoulder. And he was quite pleased with our fund raising success. If you haven't donated yet, you have one more week. It benefits Berenson's non-profit research institute. One more shout out to my recently reconnected with friend Suah. She's got perfect strangers donating to the cause.  That is also dogged determination. Here's that link
Our Designed by Leslie Team Goldman t shirts will be ready this week. In time for the 10k. Team Goldman will be properly attired. We've got 18 family members doing this thing, ranging from 6 months to 77 years. Very impressive.
My point is that we asked Berenson about the measles and he got more worked up than usual. His first words were "that's not science".  He wondered why they'd do this big publicity push when this hasn't been tested, published in a medical journal nor peer reviewed.  One patient does not make a new finding, he said.  Dismissed.  Conversely, there are a whole lot of new treatments options. Options that have been tested, vetted, and approved.  I appreciate people sending me message about the measles thing. But it's too soon to get excited. 

1 comment:

  1. When we brought something up to Greg's infectious disease specialist, he replied, "Plural anecdotal evidence doesn't make data." Sort of Like Berenson saying, "that's not science."


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.