Well, hello again! Over and over I kept wanting to update everyone on Caring Bridge. While this is not the update I saw myself posting, it is unfortunately the reality of this disease.

We found out about three weeks ago that the cancer had started coming back. His WBC made a suspicious jump and they confirmed with some more testing that we had some cells that were misbehaving. Please know, we knew this would come back, because of where it mutates and the fact that it rearranges his DNA to better survive, it was always an "if not when" situation. Obviously we hoped to have longer of a break, but here we are. 

The most important thing to convey to you first, is that this does NOT mean that his transplant failed. The cells that Zack gave to Mike did their job! His transplant is still viable, Zacks cells are still doing amazing things for Mike and are giving him a chance to get to where we are today. Which is at UNMC 7th floor again. We are 369 days from his original diagnosis. As much as I hate that the cancer is back, I am so grateful to have the year we have had, even though it was soo difficult at times. 

The original plan was to use Campath again to knock out the cancer cells, Dr Vose has done this before with a patient she has that relapsed at day 100 with TPLL. I honestly can't imagine him fighting this at day 100, I don't think he was strong enough then. That patient had transplant with followup Campath at day 100 over 3 and a half years ago and is still doing well. We know that Campath is still an option, but it is very hard on the system. In August, I had started looking into new and trial treatments that were being presented for relapsed/refactory TPLL and found several Docs who had published some promising research. Dr. Marco Herling in Germany and Dr. Matthew Davids at Dana-Farber at Harvard. They have both been working on using a combination of already FDA approved drugs to treat relapsing/refactory TPLL. We gave that to Dr Al-Kadhimi and he and Dr Vose looked into it. They have decided to move forward with one of combos from the trials. We are using Jakafi and Venetoclax to hopefully work on choking the cancer out and destroying its lifeline supply. He started the Jakafi Monday and they added Venetoclax today.

We would greatly appreciate any prayers you have. 

This therapy plan has great potential, there are only 2 people that were reported this was used on, and it had success in both. That doesn't promise us anything, but it does offer hope. Again, Mike feels good, probably better than he has felt in over a year. Venetoclax is a form of chemotherapy. Jakafi is a JAK1/JAK2 inhibitor, but the two together make a sneaky attack at this absolute bastard of cancers. We don't know how long it will take to work, how well it will work, what adverse affects it may have, how long it may last and if it will work again. We do know that we don't know enough. But we are trying and learning and fighting. Doctors all over the world are saying that we know we don't know enough but we need to know more. I have said before, maybe Mike is the key. Maybe him being otherwise healthy and able to wheather the tsunami wrapped in a tornado rolled in hurricane that we threw at him, has the chance at changing other people's lives and saving them from this horrific disease.

Mike is currently inpatient at UNMC. He was admitted on Friday 10/8. His creatinine was trending higher over the last 3 weeks. The docs were afraid if they didn't get control of the kidneys, by the end of the weekend, there may be nothing they can do to fight the cancer. They have been flushing his kidneys by putting him on continuous fluids. It is helping and his numbers are coming down. I have been driving back and forth from Adel to Omaha since Friday. I'm not sure how much longer Mike will be inpatient. The docs originally wanted to do a 7-10day rampup with the meds. We aren't sure if that is too long, too short or just right. It will all depend on how well he tolerates the meds and how fast it starts to work. Each day we should know more. 

-Laurie