The Window
Houston was interesting, educational and eventful. Jody and I spent all last week there repeating tests and meeting providers. The short of it, Dr. Wang ("Wong"), is a phenom regarding Mantle Cell. One of the most passionate people I have ever personally met. After all my own research, talking to many, hearing Dr. Wang, and his colleague, Dr. Lee, I have decided to enter a trial study called, "The Window." (I look at it like a window of opportunity before you start any other treatment types.) It is seemingly a remarkably less toxic treatment. Jody refers to it as me winning the lottery!
All treatment must be done in Houston. There are two phases and it looks like this:
Phase 1:
One day per week in Houston for the first month.
The following months (up to 12 months), one day per month in Houston.
During these days in Houston I will receive an infusion of Rituxan. I will take 4 pills, Ibrutinib, every day during Phase 1. I will be tested every two months for remission and once I am in full remission I will start Phase 2.
Phase 2:
Chemotherapy once per month which consists of 5-7 days in-patient stay in Houston for 4 months. If I stay in remission I am done, if not, I have up to 4 more rounds of chemo.
I have an appointment on Monday, October 31 and am hopeful (assuming??) I start treatment that day as well. If not, I will start very soon thereafter. I make this assumption based on the time sensitivity of my previous tests (some expire in 28 days from last Wednesday, October 19, and another will expire on November 1).
What we know: The study has been open since June 2015, 100 people will be accepted into it and only 61 are currently participating (Mantle Cell is rare and obviously a person must fit the criteria of the study).
Ibrutinib and Rituxan per the above protocol has seen a 100% remission.
Ibrutinib costs approximately $130,000 per year to take! It is free on the trial.
Doing nothing is not an option I am willing to take based on more research and conversation with providers.
Doing standard chemo protocol is extremely harsh and has some negative, lasting side effects that I hope to minimize with the trial.
Doing this trial is the best "scientifically educated" option for longevity and health. The mission of Dr. Wang is to cure this disease. The goal of this study is to have his patients live long enough for that to happen.
MD Anderson was a fascinating place. They employ 20,000 people and are cutting edge, friendly, hospitable and truly an amazing facility. I feel without a doubt this is the best place for me to be.
Overall, I feel well. I am tired and at times get quite fatigued. My blood has just now started to show signs of the disease as my red blood cells have dropped and are in the "low" level. I am not sure what that really means but I guess I will eat more spinach (iron)!
I am grateful to my husband and family for their amazing support and comfort and for listening to me ramble on and on about this, and to my friends for always being available. I have seen people without support, there are many, and they truly have a much more difficult time than what I have experienced thus far. I love you guys and I need you - even if I don't reach out to you, I know you are here, I know you are available and I know you want to help. As of yet, I do not need anything other than continued prayers for my healing, for my family's comfort and for science to catch up!