Weekly Update #84

What I want to do right now is crawl into a hole and ignore the world. Instead I am going to rip the bandaid off right now. And then possibly crawl into a hole afterwards, we’ll see.

I had a CT scan this morning to check on how well my current chemo, Stivarga, is controlling my cancer and I found out this afternoon that is answer is, very poorly. Although I didn’t show any new tumors, there was growth in my existing tumors. It’s enough to take me off this medication. This sucks because there is no “next drug” for me to try. If I want to continue cancer treatment I need to participate in a clinical trial.

I knew very little about clinical trials before my care team started talking with me around a year ago about how they would definitely be part of my care at some point. I am guessing this is true for most, so I’ll tell you a little about them. There are 3 phases – phases 1 is to test the dosage, different participants take different doses to find the highest non-toxic level. Phase 2 is to expand to a larger audience – they use the best dose as determined by the previous phase and a larger group of patients, take the drug to give them more data on how successful it is. Phase 3 is the final phase and the only one with anything resembling a placebo – some participants are given the trial drug and some are given the current standard of care aka some other approved treatment. So there are no cancer patients receiving no medicine at all, a huge fear of mine. Next up, you give consent to participate and you can quit at any time for any reason. Sorry researchers, but my life has changed or the side effects are too much or whatever, and I can walk away. Additionally, participating in a clinical trial, especially a phase 1 trial, is time-consuming. Often you have a 12-18 hour day at the clinic on day 1 because they want to draw blood from you over and over to see how you metabolize the drug over time. You’ll have to be in often for visits and blood work, especially in the first weeks of the trial. I’m not against being super vigilant when you’re putting a drug into humans for the first time, by the way, just noting the commitment.

When we spoke today my doctor said she wanted to find a phase 1 trial for me. Phase 2 sure sounds better to me, so that’s one of the things we’ll talk about in the future. At this point it’s in my hands what comes next. I could choose not to do a trial – it is walking into the unknown and potentially having huge QOL losses – but I just don’t feel done yet. I will let my team know when it’s time to pull the trigger and start the process of finding a trial for me. There are none at my center, so we’re looking at MD Anderson where I was previously a patient, and a place in San Antonio I always forget the name of. The time commitment I mentioned above becomes a much bigger deal when you’re going to be away from home for it. We’ll figure it out when we have our choices in front of us. For now, though, I am going to spend the weekend reading and watching movies with my family and will deal with this next week.

My joy for the week is that my childhood best friend very generously sent us a lamp for my daughter’s desk and it has made her room so much nicer for Zoom. I wrote my friend asking advice on lighting for the desk because it’s her husband’s industry and they insisted on sending us the light. My husband and I drilled it to to the underside of my daughter’s hutch and it makes her work area glow. And as soon as it was in my daughter got out her computer (on a Sunday!) to play around in her space.

8 thoughts on “Weekly Update #84

  1. My husband was in a clinical trial and it was not too time consuming. He opted in for all of the testing, so that meant one half day appointment per year. The really long visits to check metabolism aren’t done on every patient, and they aren’t done in every trial. Most people running trials now are doing everything they can to relieve/reduce the burden of office visits due to Covid (like remote visits, mailing medication instead of having you pick it up), so I hope this works in your favor!

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    • Larissa, thank you for that information, I really appreciate it. It would be great to be able to reduce my lengthy drives and do more telehealth, though I understand there will be times they need to look at me in person.

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  2. I’m a data manager on clinical trials. I’m not currently working on any early phase oncology trials, but have in the past and if you have any questions please feel free to reach out. Whatever it takes to make you feel more secure. Know that the people who work on clinical trials from the doctors and nurses that you’ll personally deal with to those of us behind the curtain, want the best for you.

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  3. Dear Christina,
    I want to tell you how much I enjoy reading your posts. Your writing is clear and engaging. You explain so well the complicated process of oncology treatment.
    I look forward to your posts and I also am sending wishes and prayers for you and your family.
    I’m excited to see what you will write or sew or just create next. ❤️

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