Let me start by saying it has been a super long couple of days. Thursday the 19th Jody had his baseline ct scan. This will be the one they compare future ones with to see how the chemo is working.
Friday we met with the Dr. Meiri and got the news he is not a candidate for immunotherapy because they did not have enough cells in the tissue they sent the lab. Dr. Meiri said "we are not taking more samples and wasting more time. We need to start. We will just move forward with chemo only." This was a huge disappointment for us. After Meiri we had Jody's first chemo.
All was going really well until the very end. Seconds before the pump went off he had a major side effect. They thought it was an allergic reaction but, now it is looking like a very rare side effect that our center had not seen yet. Jody looked at me and said his chest was hurting. I got the nurse real quick and with in seconds his b/p skyrocketed to 250/150 and he kept saying his chest was going to explode. They ran all the test after and said his heart was fine. We decided to go home last night instead of staying in the hotel. I wasn't sure how he would be doing the day after and he wasn't sick so, we made the drive that night. When we stopped at the gas station he had another attack and we called 911. By the time they got there it subsided again and the ekg was good. We made it all the home before he had another one. This one was smaller so, we waited it out. He had another really bad one about 1230am and we called ems. By the time they got here (they couldn't find our house) I had him settled. The ekg was good again. Since then I have just stood holding his hands trying to walk him through breathing and telling him it's not his heart. As long as we can keep his b/p from going to high I think just talking him through it is the best. Today he made it 4.5 hours between the last two he had. The neuropathy also set in with in minutes of leaving chemo. He can't touch anything cold or metal because the pain gets to bad. By the time we made it home all of his joints were aching but, he said he can deal with the neuropathy and joint pain if we can get these "attacks" to stop. It sounds like they may change his IV chemo meds.
All the researching we did before chemo did not prepare us for it.