I am CAR-T19

An uneventful day

An uneventful day

cart19 blog (1 of 2)The tools of the trade for the bone marrow biopsy. The nurse did a great job. It may actually be the best one ever. While I was waiting to begin I read some disturbing statistics though.

Only 3% of cancer patients participate in a clinical trial. WHAT?! Women and minorities participate even less. I can’t even count how many trials I’ve participated in up to now. One was as simple as monitoring mouth sores. (I had none.)

Here’s a link to a New York Times article about this. Get in a trial people! I respect everyone’s choice and right to decide the course of their medical care. I don’t understand this though. Granted, trials are not for everyone. That being said, participating in cutting edge treatments with some of the foremost experts in a particular disease with extra attention paid to medical care sounds okay to me. A trial like I’m doing now is a big deal. Every patient shouldn’t rush out to get on this bandwagon. The cancer center in my hometown isn’t equipped to do clinical trials. Many patients do not want to take the lead in their treatment, and just want to hand it over to their doctor. I’ve met many patients who do not even know their diagnosis. I’m not saying there is anything wrong with that, sometimes learning too much can be overwhelming. If your doctor is an expert in your disease and you’re comfortable with them driving your bus then that can work great. My original oncologist saw all types of cancer patients though. His work load would not allow him to be an expert for all of us. I realized early on if I wasn’t seeing an expert, then the onus was on me to learn as much as possible. Who else has more of an interest in keeping me alive?

Back to this article. How did we ever move past a bag of leeches and drilling holes in heads to let the demons out with only 3%? This is a troubling and disappointing statistic.

I would love to talk to other patients going through this, I know they’re out there. I was told by a coordinator other patients have said the same. With HIPAA policies though, the clinic is not allowed to match us up for play dates. I’m thinking of wearing a sign around my neck to advertise my status. My family is split on whether this is a good idea, but said family member also didn’t think me panhandling at WalMart to offset medical expenses was a good idea either.

cart19 blog (2 of 2)

A pic of an actual t-cell killing a cancer cell. Amazing!

Recently there was a blood cancer conference in Switzerland. Like within the last week. Naturally, I have a lot of reading and studies to pour over.

My family members just love sentences that start with “Listen to this data!” The most recent article I’m geeked up about is linked here: For science nerds like me.  Long story short, the very limited data in this study is extremely encouraging.

Tomorrow I will be getting a PICC line put in for my 4 days of chemo and blood draws over the next month. I’m one day closer!




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