When you have appointments at MDACC they schedule each little thing out for you and give you this printed schedule each day. Cause you end up roaming all over the huge complex just to get everything done. So you can print it at home or you can go to the front desk and have a nurse print it for you when you get there. So I just figured we would have the nurse do it, cause I didn't want to mess with it last night. And can you imagine that we were there so early there wasn't a single person at any of the desks yet? So I had to call my mom and guide her through the process of finding it online just so we knew what floor and desk to go to! I guess I learned my lesson about being prepared! :)
So Josh gave blood, which was nice and easy. And then we made our way to the other side of the complex for the BMA. If you remember Josh was REALLY worked up about this, even though it would be with sedation this time. He couldn't eat after midnight, which if a big deal for Joshua - I have never met a person so intent on eating immediately when he wakes. He drives me crazy with it at times! So we go there at 7:00 and they told us that they had to change the times and he wouldn't be able to go in till 8:00. So we waited and waited and finally they took us in and got him all hooked up to the IV and all the other gadgets. So she tells us they will be giving him Propofol, and it seemed familiar but I was so intent on listening to her I didn't really think much about it till later in the waiting room. Does it sound familiar to you? If you are thinking Michael Jackson then give yourself a gold star cause you are right! Josh now says he completely understands why MJ liked it so much! LOL
He said that the anesthesiologist told him "you'll feel some pain in your hand and then the next thing you'll remember is me saying Josh, Josh, wake up". And sure enough he says that is exactly how it happened! They wheeled him out in a wheelchair and I just wish I had my camera with me cause he just looked GONE! So very confused and drunk looking! And he just kept talking to me with slurred speech - it was really funny. He kept talking about giving the thumbs up and then while we were waiting for the next appointment he likened himself to a robot in the wheelchair. He was cracking me up! And he wasn't the slightest bit concerned about eating for quite some time after the test. I'm really tickled with his goofiness after the procedure! He says it was absolutely perfect and it is the only way he will do the bone marrow tests from now on. I am so glad! Especially since he will have to have another one in October.
The nurse that processed Josh for the BMA was so funny - the discharge instructions are pretty normal, like not operating heavy machinery or drinking alcohol. But then they stress don't make any major purchases or important decisions. She did clarify though, to ignore those instructions if he felt like buying me some jewelry today! :)
We waited for an hour for the five minute EKG and finally gave up and made our way upstairs to see Dr. Quintas. And we were able to visit for a long time with the super sweet trial nurse, whom we love. So that was really nice. Only saw Dr. Quintas for a few minutes, but he said Josh is doing great. Remember there are three responses they are looking for? You can read about them here on this site. The first response is a hematologic response, which he has achieved. His platelets did fall some more in the last month, though. They were at 99 today and normal is considered 140-440. He said that his low count is from the nilotonib, and not from the leukemia, so they are not worried about it. They did say they will keep an eye on it but that it is very normal for platelets to fall in the first few months and then level out as your body gets used to the drugs.
The next response is the cytogenetic response, and he is hoping that Josh has already hit that. They won't know this until the results from the BMA are in. You can see that they want this within 6 months, but he says that being on such a high dose of the stronger drug should bring that response already. So we are very hopeful that is what he will get! He did stress over and over that three months is extremely early into treatment, and that the treatment of CML takes time. If he is doing over the top well he would already have a molecular response, so we will anxiously await those results as well.
So basically the responses are just a blood response, then a chromosomal response, and then finally a molecular response. Of course these are all tied to the fact that he takes his chemo every single day. If he were to stop taking it at any point, even ten years from now the leukemia would come back. They did stress today that mutations are very rare which I think made Josh feel a lot better. It is just scary, though, cause we know that it does happen. I was asking Dr. Quintas about specific numbers that we should see with these results and he gave me some figures but then told me to not really worry about it. I had to look at him straight in the eyes and inform him that I WOULD be worrying about it. This is my man we're talking about!! Dr. Quintas made us laugh cause he then made some sort of joke about how he didn't know how Josh could forget his pills with a wife like me! ha ha ha He has me all figured out in a few short visits! I like it!So all in all, today went well. As crazy as MDACC makes me, I really love Josh's trial nurse and his doctor. It is always nice to actually get to see them when we go in. We did get a refill of meds, so we are good to go for the next three months. Josh will go in monthly for blood tests until October when we will once again have bone marrow tests. We will let everyone know when we get the test results back. Isn't it just mean to make us wait that long??! :)
Hang in there! Praying for good results!
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