My last update was all the way back in early September when I was sitting in the hospital the day before my birthday. At that time, I had just finished a round of chemotherapy (Doxarubicin and Lartruvo) and my blood counts plummeted and I wound up in the hospital with a neutropenic fever. Since then, the treatment plan has changed several times. To say it has been a frustrating couple of months would be an understatement!
Around the time of my last update, we were exploring the possibility of entering another clinical trial at Roswell Park in Buffalo. They had just started a T-Cell trial, basically the same trial I was in at MSK in New York. However, the researchers here in Buffalo had found a way to manipulate the cells to avoid a specific tumor defense mechanism. This may allow the T-cells to work better and longer. Last time I updated we were doing chemotherapy until we knew if it would be possible for me to enroll in this trial. Well, by early October it looked as if everything was a go and I was set to have my cells taken out (apheresis) and start the trial 6 days later. Unfortunately, a day before I was scheduled for apheresis, I was told I was excluded from the trial. To be excluded from a clinical trial is usually a very concrete reason. Every trial has inclusion and exclusion criteria written in the research protocol. However, I was being excluded from this trial without a concrete reason which made this all the more frustrating. To make a long story short, it was back to the drawing board. At this time, I had been without any treatment for about 5-6 weeks because we had thought I would be in the trial and I could not have chemo for a time period before it started. When I was excluded, that delay in treatment ended up being for nothing and my disease was progressing. My doctors here in Buffalo and at Memorial Sloan Kettering decided it would be the best route to do a couple rounds of high dose Ifosfamide. I have had this chemotherapy in the past and had some good results with it. The downside of this chemo is that it requires me to be in the hospital for 6 days. 6 days is a long, tedious time to just sit and be poisoned.
To make this all a bit more crazy, my doctor has also reached out to a surgeon at MD Anderson in Houston, TX. We had reached out to him to see if surgery, especially for the tumor behind my heart, might be an option if needed. He has not ruled out that possibility but at the time, wanted us to continue with the T-cell trial first to see if we could achieve some shrinkage first. Obviously, we are not doing the T-cell trial anymore, but the plan with chemo is the same. Hopefully, achieve some shrinkage and then explore the possibility of surgery. This would be a big open heart surgery and it would be the 8th surgery on my chest cavity. The surgeon definitely wants to make sure we can do whatever we can with systemic treatment first that may help make the surgery more successful.
I finished round one of chemo on October 16th and started round 2 yesterday, Nov. 10th. After this round we will do a CT scan and see what everything looks like.
This has definitely been a difficult 2 months with a lot of decision making, some disappointments, and some hope of new options as well with the possibility of surgery back on the table. Through all of it, we are trying to live as normal a life we can. Lorrina is doing well in her new job and we are spending as much time as possible with are daughter Nalina who will be one on Nov. 22nd! I can't believe it has already been a year. It seems like yesterday we were bringing her home and hovering over her every move. She is truly the love of our lives and has been the greatest miracle baby anyone could ever ask for! I have unfortunately not been able to return to work and it is very hard for me to watch the baby all day by myself, especially in the mornings when my pain tends to be the worst, so she spends part of the day with my wife's grandmother who we are so lucky to have. Plus she stays away from daycare and all of the germs that come with it.
Thank you all again for following along and for all your thoughts, prayers, and messages. Your support means more than I could ever express! Lorrina and I are so grateful for the support we have. Hopefully I can avoid anymore emergency visits to the hospital and I will try to update the next time we have some news about the plan.
