3 month biopsy (from start of Ariad trial)

I can't believe how fast time has gone by. It just like last week that we scrambled to make our way down to Portland on a Friday afternoon, so that we could start the trial. Yesterday was our Day 1 of Cycle 4, which roughly translates to the 3 month checkup. Yesterday involved getting an Echo Cardiogram, blood draw of like 12 tubes, and then the always fun BMB. The first one at OHSU was with Dr. Mouro, where as this one was with Dr. Deininger. Unlike all previous BMB's, Dr. D does it while you're lying on your side, where as the others have you laying on your stomach. I was a little skeptical since my bones are known to be 'stubborn', and I envisioned being pushed right off the table when trying to get through the bone into the marrow. But surprisingly, it seemed to go rather smoothly, and quickly. Of course that could be contributed to Valium and Morphine that they injected into my IV right before they started. I hit a beer level of 12, which is a new high. That is my personal scale on how relaxed I feel, so basically I felt super drunk.

 

The ride home was basically sleeping it all off, thank god for Cynthia as the driver. Today was the usual soreness, and the drugs wearing off. And of course, the waiting on the results. They will probably be trickling in over the next week to 10 days.

Last week has been scary

As most of you know, our close friend Tyler had a transplant a year ago. Ever since October, I have preparing myself for the same path ever since I got on Sprycel.

 

After about 1 year of being PCRU, CML started showing up again on his tests. It was miniscule to start with, but at the 1 year anniversary post his transplant, it shows up with  cytogenetic of 2/20. They decided to do a DLI, which is basically a boost of white cells from his donor (father). After being off Tasignia for a month, he suddenly found out that he was close (if not in) blast crisis. His White count didn't show it, but he had 17% blasts in his blood. They also discovered some tumors that are related to the CML white cells, and they are looking to treat those with localized radiation.

 

The good news is that after 3 days on Tasignia, his blasts were down by 50%, and at least he is responding to the drugs again. But it just shows how fast things can change, and that a transplant not only carries risks, it doesn't guarantee results.

 

CML is a strange illness. For some it's a wild roller coaster ride, while others as my mother's friend from High School who was on the Gleevec trial, is doing great 12 years later. All we can do is grab on tightly and go for the ride, we have no other choice.

 

PS. In my warped mind, I was thinking that if I had to make the decision of a transplant back in November, I may have wanted to time it such that I was 'stuck' watching March Madness while recovering....If you ask Cynthia, my real illness here is March Madness and my love for SU Basketball....Go Cuse !