I debated whether I should blog about this or not since I have mixed emotions. This situation seems more complex than just a sensationalistic headline.
Last week I woke up to a stream of messages about Juno, patient deaths, and the CAR-T trial being suspended. First off, thank you to my family and friends who even have this information on their radar.
That is terrible. It's horrible news. I wonder how did that happen? I am shocked, I am sad. I sit here, alive today and cancer free because of this very same trial. There were patient deaths before I enrolled. There were patient deaths from cancer for people who were too sick to get into the trial as well. Dr. Turtle mentioned to me that I was between a rock and a hard place. I don't know what options were available to these patients who lost their lives, but I do know getting into the trial is not a cake walk. Hindsight and uncertainty can fancy up many alternate endings. Losing my sister to cancer, the number of times I have retraced the time frame to the "what-ifs" that could have been different drives me out of my mind.
For the time being, my trial is going back to Cy for preconditioning. Not the flu-cy I had. That alone makes me sad because I am biased based on my results. Will lives be lost as a result of that? Who can know. I do know the doctors are doing their VERY best with the knowledge they have to save lives.
If I'm in a burning building and am pulled out but die from smoke inhalation, don't shut down the fire department. I'm only speaking for myself. I'm going on record right here right now, that if something happens to me as a result of my participation in this trial, don't shut it down. It's impossible to know all the risks, but I knew death was a risk. With cancer it was kind of a certainty, barring a spontaneous remission. Everyone is doing the best they can with the current information they have.
As of what I read today, Kita Pharma is still doing their trial with flu-cy.
I'm sorry to link to yet another article, but I saw this this morning and couldn't agree more with the title of the article. It was pointed out to me that the anonymous patient is referred to as "she" instead of the usual "he." I shouldn't take it personally, but of course I will anyway. Go Juno! I love you guys! This article also briefly touches on my concerns--and the reason I pushed to get into the trial so early--that if & when cart19 becomes available, who is going to pay for it? Who will even be eligible to receive it? It's a scary thought when lives are literally at risk.
In totally unrelated news, my world came to a screeching halt Thursday night. A few weeks ago I rescued 2 dogs. Adopted from a rescue, not picked them up on the highway or anything. Integration into the house was going slowly & cautiously, and pretty good. Thursday night one of the dogs snapped without warning, no growling, nothing. Until this point I was a firm believer that a dog always gives a warning sign before an attack. Some indication. Sadly, that was not the case. I have never bought a puppy, I have only ever adopted or gotten dogs from a rescue as adults. I was incredibly naive with all of my prior good experiences. Long story short, the dog attacked me and killed my 4 year old chihuahua. I know one brutal dog attack shouldn't make me jaded against ever getting a rescue again, but I will not. Not only that, I am now terrified of dogs. It seems inconceivable. One thing that keeps being said to me is "well, you don't know what type of life that dog had." I don't, that's true. I lost my best friend and star of my Facebook page. He's been with me for all my treatment, all my back & forth to Seattle. My heart is in a million pieces.
Apologies to anyone who has looked for an update, and many thanks to everyone who has contacted me. I will still answer whatever I can.
It's only been a few months, but everything is going according to plan. My t-cells are still doing their thing. I couldn't be happier! I get lab work every 2 weeks. Last week was pretty funny, since it was at my local center and they weren't used to seeing a kit for research and everything involved. More entertaining to me was that it was barely half of what it had been.