I'm not sure there's anything solid to attribute that to. She's been on the Xalkori for 12 days now. So, yeah, it could be the drug. If so, than this is even more of a wonder drug than expected. Regardless, we'll take the improvement as a positive sign that things are headed in the right direction.
She's been going longer between pain medications as well. Sometime stretching as far as 4 hours between doses. Two weeks ago, that was unheard of.
My mom has left for her appointments in Naperville. Since she's doing so well, Jen believes she can handle the kids during the day. I'm pretty sure she can too. They aren't going anywhere. There's plenty of help in the neighborhood should Jen have an emergency, and there's always 911. I'll come home, make dinner, and take the kids out for some adventure somewhere.
Again, to all of you out there that have helped out, cooked food, delivered food, watched our kids, whatever...
THANK YOU.
You are all a blessing to us. And we're truly humbled by the outpouring of support.
Jen had a number of appointments today at Froedtert, starting at 9:30am and ending around 2pm this afternoon. I was there of course, carrying "the football" as I've come to call it. It contains all of the lab results, clinical trial printouts, livestrong binders, and cancer documents.
Jen's morning started with the requisite blood work and labs at 9:30. It was a quick appointment... all of about 30 minutes. For some reason they didn't use the mediport that she had installed two weeks ago and instead tapped her arm. They should have used the port. That's what it's there for. Heck even I could draw blood through that thing. It's huge.
Next up we saw doctor Santana. He was very pleased to hear of the improvement of Jen's condition and attributed it to the medication. The discussion then turned to what is most likely happening within the tumors.
- The Xalkori is interfacing with the ALK positive tumor cells and is "turning off" the uncontrolled cell division.
- It's essentially "killing" the cancerous cells
- The bodies "garbage collection" systems are sweeping up these dead cells, like any other normal dead cells within your body and removing them naturally.
In short: the tumors should be shrinking, and the general improvement in activity, pain, and blood levels is the best indication that this is the case.
Dr Santana then initiated the discussion on how long the drug will be effective. It was stated clearly up-front that the cancer will eventually become resistant to the Xalkori. While he doesn't believe that it will be soon, inevitably it will happen. At that point, we'll have to change how we attack the cancer. Whether that's going back to the carpet bombing with chemo, or Hopefully, the next genetically targeted drug, we won't know until we get there. For now, we've got the current plan, and we're executing it. It's a question of how far we can shrink it before the resistance appears
Jen will have CT scans on July 23rd to determine the size of the tumors. Until then we're really flying blind. The only instrument to determine progress is how Jen feels. Did I mention how much I hate ambiguity and waiting?
Next up was the nutritionist. This appointment was set when Jen was loosing weight at an alarming rate. She's lost about 35 pound since April. However, she's managed to maintain her current weight for the last few weeks. So this meeting was really a talk about how to maintain muscle mass. Essentially I've got to up the protein in her diet. So nuts, beans, and lean meat are going to get pushed. GORP (good 'ol raisins and peanuts) should become the snack of choice (if I can help it).
I cancelled my annual pheasant hunting trip out to South Dakota in November. Given the uncertainty of everything it seemed the right thing to do. Kind bummed about it as it's one of the highlights of my year, but I'm not thinking much beyond a week out nowdays.
1 comment:
Chris, Glad to note that Jen is doing better with her daily activities. We pray that her CT results are promising..
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