MD Anderson This Week, by Libby

Monday, October 22: Dr. Nieto and our trip to MD Anderson in Houston

Well, since there was a Trump rally in town and Doc had a hard time finding any hotel rooms available, we stayed in the America’s Best Value Inn Motel, just a short Uber ride away from the transplant center. We arrived at the motel at around 6:00pm through some really heavy traffic from Houston Hobby airport. Mom and I looked at each other funny when we arrived wondering if the rooms would be clean, be clear of bed bugs, etc.! We got tickled, but realized after scoping out our rooms, that they were pretty nice for $80.00 per night!

We took an Uber to Hungry’s restaurant to meet cousin Ray. Ray is currently head of noninvasive cardiology at the Texas Heart Institute. We are very close since during our childhood ,along with my other siblings and cousins, we grew up hunting turtles, riding horses, snow skiing trips, beach and camping trips together. Ray knows more about my personality traits than most people. I adore him.

Tuesday, October 23: My appointments

Good news is that my bloodwork, vital signs and weight were good today. At the clinic, we didn’t have too wait long. I met Nieto’s nurse Annie, his PA Melissa, and Ms. Sheen who is the transplant coordinator. They gave me a list and direct phone numbers for my whole transplant team including Dr. Nieto’s e-mail address. They were all very upbeat and knowledgeable. PA Melissa preceded Dr. Nieto and explained the difference between an Autologous (harvests your own stem cells) and an Allogeneic stem cell bone marrow transplant (using a donor’s stem cells). MD Anderson currently does the most stem cell transplants in the country.

It seems that for a variety of reasons, Dr. Nieto is recommending an Autologous stem cell bone marrow transplant using different method other than the standard Beam. He is proposing GEmBuMel (+/- SAHA/VIdaza) (N=23) because of the superior results they are getting for their patients with my disease. I got excited because I thought maybe we could do something similar at Emory vs an Allogenic transplant?

Wednesday, October 24: Insurance

After my visit with MD Anderson yesterday, I learned that, to date, Humana will not cover a stem cell transplant. The MD Anderson folks indicated that they have been trying for two years to negotiate a contract with Humana for these services. MD Anderson has this drug synergy protocol called GembuMel that they are proposing for me that has worked much better for them than the standard BEAM approach on Autologous transplants. My chances for survival are much higher with this approach and allow me to get a transplant using my own stem cells vs an Allogenic transplant (donor cells) if I do the procedures at MD Anderson. There is a high risk of Grafts vs Host disease with Allogenic transplants. I am very interested in pursuing this GenbuMel approach for my specific situation. Emory to date is recommending the more aggressive Allogenic transplant which is more expensive. The out of pocket cost of these transplants is roughly between $600k and $1,000,000! I have reached out to Emory doctors to see if they could/would follow MD Anderson’s GemBuMel protocol but my suspicion is that they will not feel comfortable with this approach.

MD Anderson mentioned that they are hopeful that they can negotiate a successful contract with Humana for transplantation by January 2019 but they are still uncertain. Wishing I had a magic wand to help the negotiations!

I have an appointment at Emory to meet with Dr. Waller at 10:00 tomorrow to learn about alternatives to Dr. Nieto’s recommendation.

A lot to figure out…

 

One thought on “MD Anderson This Week, by Libby

  1. Libby, You guys are amazing!!! I only understood part of this, I will go back and read carefully with a cup of coffee. I think you are on the right track…Money is no object here..we got you….all your friends have your back! And there is always the lottery!!!! Love you so very much.
    Jan

    Like

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