February 7, 2024 Update

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Just returned from our visit with the Kaiser Oncologist. He reviewed Michael’s scans and listened to our description of his current state of health with the frequent infections. Nephew Paul McClelland explained Michael’s situation best. See quotes from his email below.

Unfortunately, the two new spots in the liver upgrades Uncle Mike’s disease to metastatic status (stage IV, perihilar cholangiocarcinoma with intrahepatic spread). (NOTE: Dr. De Graca said things were not clear enough to stage the cancer as a 4.) This changes the game a bit since the goal with therapy is no longer curative, but rather to prolong survival while maintaining the highest quality of life possible for Uncle Mike.  Depending on underlying cancer biology, tumor location, baseline health, and a ton of other factors, patients can have a widely variable survival course with stage IV cancer, but the idea behind therapy for stage IV disease is to delay cancer symptoms as much as possible instead of curing the cancer completely. 

For years, the gold-standard treatment for metastatic cholangiocarcinoma has been chemotherapy (gemcitabine + cisplatin), which has been associated with a 50% overall survival rate of around 11 months.  In 2022, new immunotherapy drugs such as durvalumab and pembrolizumab were added to this baseline regimen and were able to extend that 50% survival rate to around 13 months. A small subset of patients (< 5%) survive longer than 2 years.  

The oncologist, Dr. De Graca, confirmed what Paul said–that the benefit of doing chemo could add 11-13 months of life. But that time frame is measured from when the cancer began, not from when chemo is started. The cancer likely started 12 months ago so he has already outlived these estimates and that is without any treatment.

Dr. De Garca brought up a really important factor to consider before deciding to go with chemotherapy: Mihael’s frequent fevers and infections. He explained that the chemo most definitely will lower immunity and cause more infections, weakness, etc. He does not recommend chemo in Michael’s case and said we should ask ourselves if it is it worth it to get 2-3 extra months and have to suffer more.

The infusions take 3 hours (a drive to Salem) and would be administered once a week. The schedule is two weeks of treatment followed by one week off, and would be repeated the rest of Michael’s life if he handles it well. The doctor is willing to give chemo to Michael if he chooses that path. We are in the process of deciding what we want to do.

3 responses to “February 7, 2024 Update”

  1. Gayle

    Our hearts are with you both💞 We’re praying.

  2. Myra Gruenberg

    We love you all so much and will continue to pray for a miracle and believe for the Lord’s presence with you in this difficult journey. 💞

  3. Marian

    Heartfelt thanks for these updates. It’s wonderful to hear that Paul is so helpful in offering support from a medical perspective, and the nurse who took care of Michael in your Feb 9 appointment really sounds like a treasure.

    I can’t help wishing I could be there to help out around the house, Sarah, and to sit quietly with you, beloved Michael… just BEING with you. But I’m grateful that you know, in spite of all physical limitations, that I’m with you in spirit and that I love you forever. When I think of you now, I experience you more and more as exquisite LIGHT… intense, and so beautiful.

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