I am CAR-T19

Exciting news x 2

Exciting news x 2

I’m not going to bury the lead on this. Seattle is opening the FIRST IMMUNOTHERAPY CLINIC! I attended the Science Spectrum in Sun Valley and my head is reeling. There were 3 featured speakers who each deserve their own blog post, plus in other HUGE news for me, I met Dr. Gary Gilliland from Fred Hutch! Yes, THAT Gary Gilliland, star of the earlier blog post. Separate blog post on that coming up. The three speakers were Dr. Julie McElrath, whose recent research is on an AIDS vaccine, Phil Bradley, Ph.D, who is focused on protein research right now, and drumroll…Dr. David Maloney! If you’re reading this blog then you should already know what research he’s doing that is changing lives. I also met equally amazing spouses. 100% equally amazing. Look, I am not a fan of overuse of the word “amazing.” I’m telling you all, the word amazing was designed to describe this group. Global humanitarians.  Simple Resume: Change the world, improve lives world wide. They inspired me so much, that as I drove to the airport, I called a community leader in my own home town to find out more about where I can start to get involved, albeit on a much smaller scale.

As with almost everyone I’ve gotten to meet at Fred Hutch, these 4 could not be more down to earth, kind, and inspiring. The event was put on by an entire hardworking support team. They all give so much of themselves. One of my favorite things about the team at Fred Hutch is that everyone works together cohesively without ego, all for a common goal of helping others. Their model of patient care is like no other place I’ve been and it is remarkable. Experience level 4 on that. It’s not like I’ve been to every single clinic in the US. On top of all that, they attract the best & brightest. Being around the group of people not just wanting to change lives but actually making it happy is a bit intimidating.

The other big big BIG news is that the trial for immunotherapy in breast cancer is starting in August! To be fair, there is another immunotherapy cancer trial starting and I can not remember which one. Many apologies, when I find out I’ll update.

It’s still surprising to me that some people read this, since I think it’s not exciting for most. That being said, I read all the emails I get, and if any of you have ANY questions at all about what my experience was like going through the CAR-T trial, I will answer it here. I won’t name names. Most recently, here are the questions I’m getting.

Where was your cancer? Pretty much everywhere, but NOT in my bone marrow. I even had a lump on my head which Dr. Maloney said probably wasn’t cancer & I insist otherwise. A PET scan does not scan above the ears and taking a biopsy to see who was right was not at the top of the to-do list considering I was staring death in the face.

You didn’t have ANY side effects? I would say yes and no. The CAR-T cells did wipe out my B-cells so I have now had 3 infusions of IVIG to help protect me from getting an infection. Over the last year, 3 infusions, the most recent last week. The “storm,” no. I wrote a blog post about my very boring no-side effects situation last year.

but…you look so healthy. Thank you. Thank you God, and thank you to the team at Fred Hutch for saving my life.

Send me some questions, it would make my day. AND, if anyone has any interest at all in help support this research, please let me know. Any amount helps. It’s all I want for Christmas. I mentioned to Dr. Gilliland how when I started this blog, I only bought the webspace/domain for a year because my future was so uncertain, I didn’t want to commit to 2, 3, 10 years. The last 13 months have gone by in the blink of an eye, but there are others facing this just starting. Time and health are not something to be taken for granted, not for me anyway.


Science Spectrum 2016 at the home of the wonderfully gracious Donderos.


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