Weekly Update #86

There is so much news from this past week! And my mood is far better than it was last week, when I just felt sad.

On Tuesday I went to San Antonio to visit with a site for phase I clinical trials. We started the process of assessing if I am a good fit for the trials, which includes giving samples and having ECGs done. I also had a physical exam by the doc, which included testing the strength in my limbs. It matters that I am well enough to handle the rigors of a trial and so far it doesn’t look like my underlying health will exclude me. I left with 3 trial options to look over and an appointment to come back in two weeks and discuss them. For the trials I got the huge informed consent documents which include the treatment protocol and how often I’ll need to be at the clinic as well as anticipated side effects and info on the confidentiality around my info.

One thing that is interesting to me is that somehow the definitions of phase has shifted and there are now phase I trials that are not dose exploration, where they find the highest tolerable dose, but dose expansion, where they have more people on that dose and see how they do. A dose expansion trial is much more interesting to me than dose exploration, as I have discussed before.

I also received a phone call from MD Anderson this week setting me up for an appointment with the clinical trial team there. The good news is I get to skip the bureaucratic step of visiting my “current” doctor there. The bummer news is that I will have to be there early in the morning on my birthday. I am trying to see it as a gift that I have this opportunity, but really the gift is that I will get to have socially distant lunch with one of my best friends who happens to live there.

My joy for the week is that I decided to take a measured risk last weekend and rent a house in town with 3 friends who have been as COVID-careful as me. It was so restorative to see their whole faces and hug and laugh together and eat well and just not feel on guard. The house we rented was a trip, filled with original artwork of varied styles and themes. We had a really lovely time and I came home with so much energy after having my soul refilled a bit.

5 thoughts on “Weekly Update #86

  1. Wow! You do sound so much brighter and with hope. I am so happy that you spent time with friends! I am thinking of you ❤️

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  2. Oncology trials are so complex! One additional question to ask your doctors is whether you will eventually be eligible for the experimental medicine, even if you are in the control group (the control group meaning “best available current care” not placebo as some of your readers may be thinking). Some trials have a “roll over” policy so that patients can benefit from promising therapy, or maybe stay on therapy that is working for them, long before it is otherwise available.

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    • Larissa, thank you so much for this advice. I had kinda thought it was a given that the trial would have a “roll over” policy so I do want to know if that is not the case. I will ask my team when I start later this week.

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