Back in the Sunshine State

We are back in Tampa right now and Bennie is getting his fourth and last infusion of yervoy and fourth (and hopefully more to come infusion) of the anti pd1 drug.  They did a chest x-ray and bloodwork and everything looks great!!!! Wahoo!!! So we will see if he gets any side effects from this round of drugs.  Hopefully it is smooth sailing for the next few weeks. 

In two weeks he will be getting his body scanned as well as a MRI of his brain to see how well this drug is working to keep the cancer at bay.  If he has any tumors pop up then he will be kicked off the trial.  This is a real nail biting time for us!!!!!! The next two weeks are going to be filled with anxiety as our minds play the "what if" scenarios like a song track on repeat.  There is so much going into these scans.  We came into this trial mainly for the chance to get the anti pd1 drug that is not FDA approved.  He has been getting that drug for the last 12 weeks, but only at a minimal dosage of 1mg.  If everything looks good on the next scans then he will just be getting the one drug, anti pd1, but at a higher dosage of 3mg.  So the more we can get of that the better, because we can't get it without being in a trial.... and it probably won't be FDA approved until October. 

The ASCO ( American Society of Clinical Oncology) Meeting is also in two weeks.  The conference is when all of the clinical trials from the past year are presented with the newest information and results.  The next years clinical trials and treatments are typically based off the presentations and results from this conference.  I am such a nerd I would love to be a part of it .... but for a normal joe shmo it would cost me 1500 dollars or so.  So I will pass. We won't see Bennie's Dr. the next trip because he is a part of the presentations, but he will be waiting close by for an email update from the Nurse Practioner to give him an update on Bennie's scans.  EEEEEE!!!!!

We are almost done here with the infusions, and then we are off to catch our flight back to Houston.  Tomorrow morning Emmi starts her first swim meet!!! It is exciting, because it is something Bennie and I enjoyed growing up.  But also kind of scary, because we don't really like her to be in the sun all that much.  Since Bennie has melanoma, the genetic potential for the kids to get it at some point is substantially increased.  We have a tent, loads of sunscreen, hats, sun shirts, and are as prepared as we can be to keep all of us covered up.  Hopefully we will be able to share with others at swim team the importance of staying protected as well, because I am sure someone will forget sunscreen and become lobster red.  I may just go around wearing a sign for free sunscreen, and squirt random people with sunscreen who may be getting toasty!!!!! I didn't read that in the code of conduct for the swim team!