Nov 11, 2011 - 3:52 am
We received GREAT news today!!! David is approved for that special treatment that we wanted him to have...the blood brain barrier disrupter protocol!!!! I spent the morning on the phone with OHSU, with our oncologist's staff, with a patient care coordinator, with social security, with David's insurance company, with the hospital admittance person....I talked to some of them more than one time. All of them said that David is cleared and he will get treated. Some of you might remember that we were going to do this procedure back in July, but the day before he was to be admitted and treated, we were denied by his insurance. That's why I called so many people today, trying to get them to swear on their life that David will get treated. I never want to go through the agony we felt when David was denied treatment the day before he was supposed to start.
David is going to be admitted on Wed at 6 am for a whole bunch of tests...MRI, EKG, bloodwork, chest X-rays, etc. and he will have a procedure done to put a port in his chest. Then on Thursday (and again on Friday), he will have a catheter put in his groin up to his aorta, as close to his brain as they can get, then they will put in the blood brain barrier disrupter (Mannitol) and then shoot in two chemos. The third chemo will go in thru his port. They will repeat this same procedure the next day, on the other side of his body. Then he should be able to go home late on Saturday. He has to wait a certain amount of time after getting chemo to get two special shots...one to boost his bone marrow production, another one to protect his hearing. Before they had discovered or invented the shot to protect his hearing, patients would lose their hearing from the chemo. It's the carboplatin given with the BBBD method that does that damage. But with the shot, no one has lost their hearing. Thank God they have that shot.....
Last month, David had this same treatment, except they did it in one day, and they did not use the disrupter. They just gave the chemo to him intra-arterial. Even without the disrupter, our NO says that intra-arterial chemo is 10x more potent than regular chemo via an IV. With the disrupter, he says it's 100x more potent. Maybe more effective might be a better description than potent? I don't remember the exact wording...I just remember the increments of ten.
After the first treatment, David was so incredibly sick. He threw up for hours, really hard. We are hoping that he will not get as sick this time, but I think it's pretty likely that he will be as sick...maybe even sicker. We will see....David's blood counts were also really low, which was not expected for the very first time he did this chemo. And his hair started falling out right away...they thought he would not lose it for a few treatments yet. And he's had some really nasty, gushing bloody noses. But....no major headaches, only moderate ones that he's been able to tolerate and treat with oxycodone. And no more seizures! He's had two weeks of relatively good days. A few days he's felt pretty lousy, but he's recovered. Compared to how he felt before chemo, he's doing amazingly better. I am hoping and praying that when they do the MRI on Wed, it will show some shrinkage in his tumors already, from the initial intra-arterial chemo treatment.
Now...there is no guarantee that this BBBD treatment will help David. And even if it does, the dr says that the tumors will eventually find a way to get around the chemo. They will not really say what to expect time-wise...one nurse did tell me that they would consider it a favorable outcome for David to be without "disease progression" for two years. Before David's recurrence in July, that comment would have made me so miserable. Right now, after what we have been through recently, I am very, very grateful. David was so sick with headaches, seizures, etc. that he was seriously losing hope, and I was terrified that he would not be with us much longer. So two years seems like an incredible gift. David is encouraged because he's feeling better, and because he's going to get this treatment. And who knows what could happen in two years...who knows what this chemo might do? Maybe David will be one of those people that you hear about, who do really well and the drs just don't know why......all I know is that today David is feeling better and I am enjoying each and every day, one day at a time.
I will post here on CSN on a daily basis while David is in the hospital. I'll just do daily updates and add it to this thread. I will stay with David while he is in the hospital and I'll have lots of quiet time while David sleeps off the effects of the anti-nausea medicine, and while he recovers from the treatments. I'll try to keep my posts brief! :)
Thanks for reading this!