Wednesday, April 6, 2011

Alright, a plan...

We are now scheduled to head back to Bethesda and the National Cancer Institute (NCI) located within the National Institute of Health complex next week.  Our appointment is Thursday morning at 8:30am until they are done, so we fly out Wednesday and back on Friday. We've got a lot on our plate here with Meagan's dad's health issues so no time to relax and make the trip fun. The NCI process is pretty interesting. Read on if you want the details.

They want us to bring along the last two CDs of chest/abdomen/pelvis CT scans and PET/CT scans. Plus the brain MRI Meagan will have Friday. The files are so large you have to hand carry them. They wanted all the UNSTAINED pathology slides from the previously extracted tumors - so those got overnighted today. Additionally - they wanted any blood workup indicating her HLA 2 status, which we have, so that report was faxed today. Meagan also has to bring along all her medications and vitamins, they may want to wean her off all those before starting a recommended protocol.

Here's how it works:

1. We arrive at Admissions office on Thursday the 14th at 8:30am, no breakfast. Then it's a series of visits to various floors for lab work, blood and urine samples, EKG, chest x-rays, etc. We go back to main clinic at 11:30am. At that time we see a social worker, along with some other new patients (she said its only about 4) and maybe some previous ones, and sign more consent forms. We then meet with two docs. First is a Fellow/Resident who gets the full history and does a complete physical exam. Then we meet with a senior attending physician (not Steve Rosenberg who heads up the melanoma program) who apparently discusses some more the history and current condition.  Then we go home. We do not expect any tumor extraction at that point.

2. The following Monday they have a staff meeting, including Rosenberg, where her case is presented and the best protocol is chosen and recommended.

3.  Then we will be contacted by the attending physician or assigned research nurse to discuss the plan, and negotiate dates etc. (for example based on our older son's college graduation on May 15th) and depending on protocol chosen, arrange for dates for them to get tumor samples for their adoptive cell therapy approach

4. We'd then obviously want to talk with our oncologist before moving forward.

5. It's also possible they may want to have her do a course of Interleukin 2 first, and they'd follow that and then if that's not successful move forward with a particular protocol.

So far they are professional and friendly, which is nice. Flight is booked, waiting for them to send the logistics package before I book a hotel. It's a relief to finally have a plan!!

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