Neratinib: More Hoops to Jump Through

I spent two days this week writing up my entire cancer treatment history--all 11 years of it, complete with notes on my response to each treatment I've had--and then I delivered this 1,300-word document to Dr. Lee, my medical oncologist, so he could use it to write the application for me to get neratinib from Wyeth/Pfizer on compassionate use. 

Then, I received a phone message from Dr. Lee saying that the information we had provided wasn't enough--the folks at Wyeth/Pfizer needed more details and copies of my original pathology report (the analysis of my original tumor that was done after my mastectomy back in October 1998), and the exact date of my mastectomy, and more. 

Now, I'm not stupid, and I had what I thought was a complete copy of my medical records from the first eight years of cancer treatment, which was at the University of Washington Medical Center and later at SCCA. I had this document because I asked for it when Dr. Livingston left Seattle and I moved on to another doctor. 

So I went though this thick stack of papers, looking for what Dr. Lee had asked for, only to quickly discover that I DO NOT HAVE a complete copy of these records. Whoever made the copies, despite assuring me at the time that it was my complete file, minus some duplicates, appears to be only Volume 3 of my three-volume medical history at SCCA. 

I'd like to say that I was outraged by this, but I'm not. It's pretty much same-old, same-old in the cancer world. 

I delivered this document to Dr. Lee, even though I don't think it has what he needs, and now he or I--or both of us--will have to try to get the records from SCCA in a timely fashion. I'm letting Dr. Lee make that request, because they will respond more quickly to a doctor, and they won't charge him for them. 

Then, later, after the dust clears, I'm going to have to get a copy of Volumes 1 and 2 of my cancer records. I'm expecting to be asked to pay a copying fee--so much per page--so I think I'll make this request through Dr. Lee's office. 

Meanwhile, my neratinib application is stalled, once again. 

As I said, I wish I could feel outrage, or anger, but it just makes me tired. Argh. 

Why is it a good idea to have your own copy of your medical records? See; Keeping Medical Records

@ Jeanne Sather 2009.  

Comments

[carver]

I'm sorry you have more hoops to jump through. It is exhausting even in the best of health to deal with this type of thing and it must be daunting indeed when you are dealing with so much.

[Miranda]

Jeanne
Why am I not surprised?
The medical profession has grown to feel that they own our illness and our bodies. Our medical records "are" theirs, so...they gave you a copy of what they understood you needed to have, instead of a copy of everything. It has happened to me several times in the past. Now, I systematically ask for every document every time I visit the doctor. Of course, my medical visits are not so frequent, but I ask for a copy of everything. The doctors DO NOT LIKE IT.
I am so happy that you are raising these issues. Because it depends so much on us, on our attitude to our own health and on us owning our health

[jeanne Sather]

Miranda--you know, I need to start doing that. I usually ask for reports of important scans and such, but not everything. Argh.

[Cathy McDonald]

I guess what strikes me is this: I'm sure you are not the only individual who is applying for compassionate use of the neratinib. However, I would also guess that that are NOT thousands, or maybe even hundreds, of folks applying. (Of course, I could be very wrong with this statement.)
I also recognize that corporations performing scientific research need to be rigorous in their data collection. I realize they probably need to have rather strict criteria for giving out a drug for that reason.
However, again, it seems to me that the amount of documentation they are requiring of you translates into plain English as "Let's set the bar so high that she'll never meet it." And, again, how many requests do you think they get. Would it kill them (pun intended) to give out a small number of doses without following strict scientific method???
To put it eloquently, this pisses me off.