We arrived at the hospital this morning expecting Brody to receive his usual chemo. Instead our oncologist surprised us with news of a more encouraging option for right now. Brody has been taking a chemo regimen that consists of Vinorelabine, Cyclophosphamide, and Bevacizumab. There is a clinical trial that has been running for the last year and half that compares the outcomes of these three agents in kids with rhabdomyosarcoma against Vinorelabine, cyclophosphamide, and temsirolimus. The regimens are pretty much the same except for the difference of Bevacizumab or Temsirolimus. Our oncologist discovered last night that preliminary results of this trial were just recently released. It turns out the regimen that contains the temsirolimus was quite significantly more effective against rhabdomyosarcoma. So today Brody was switched to the regimen containing the temsirolimus instead. He will be on this regimen instead for the next month and then will get another CT scan to determine if it's working or not.
In the meantime we are moving forward with steps to enter the trial in Grand Rapids in case this switch is still not effective.
Brody did well with the new medication today. He did not have any major problems. His only complaint is feeling excessively tired. He could barely keep his eyes open as they were starting it. This is likely mostly due to the IV benadryl that is given with it to help prevent severe allergic reaction to the temsirolimus.
Brody has been getting tired for easy these last couple of weeks though and has been having leg pains and belly pains. These all come and go and the severity varies. He also gets short of breath very easily. These are new developments these last few weeks. They were all signs to us that Brody's tumor may have been gaining ground. On top of that, a few weeks ago, our oncologist felt an area in his abdomen he suspected to be new tumor growth. He couldn't say for sure until doing the CT scan. He didn't want to do the CT scan right away at that time though. He had us wait until the end of Brody's chemo cycle so that a better comparison between CT scans could be made. So, yesterday when we got our very disappointing news, we were not entirely surprised. Today, though I was surprised at how little it took for Brody to become tired and short of breath. Walking extremely short distances requires Brody to stop and rest to catch his breath. Walking from a special parking lot for Heme/Onc patients at the hospital to the Heme/Onc office is not a very long walk. But today, Brody had to stop, rest and catch his breath three time to make it there. I, of course, let him walk as slow as he needed to the whole way. There were not any wheelchairs available at this entrance today and he said his belly and legs hurt when we try to carry him. It's so scary how fast things can change.
We have a stroller for Brody but it's not holding up too well. Brody's weight is a little too much for it. We decided to go ahead with getting him a pediatric wheelchair instead. We will be checking them out tomorrow. Hopefully this regimen he started today is more effective and starts decreasing the size of the tumor(s) quickly. Hopefully soon, we won't need the wheelchair and Brody will be back to feeling more like himself.
Brody has a surgery and chemo scheduled next week. He will have surgery next week to replace the stent in his right ureter. After surgery he will be sent to Heme/Onc for chemo. He will be released that same day from the hospital/he should not need to stay overnight. Hopefully, all goes smooth with this next week. There is some concern that the tumor may now be in the way too much to be able to successfully replace the stent. Brody's urologist reviewed the latest CT scan though and still thinks she will be able to do it.
Thanks everyone for all your prayers and support. Please continue to pray for us.
