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A Little Experimentation

Saturday, June 07, 2014

Things have changed some more since the last update. Not the diagnosis, unfortunately, still stage IV renal cell carcinoma. However, we've been tromping all over creation talking to specialists, and the treatment plan has changed considerably.

Rob has not started on the anti-angiogenics (also called TKIs ) - instead he is enrolling in a drug trial for a cancer drug mostly referred to as PD-1 or PDL. It's an immunological drug, which is already approved for a few other cancers, but not for RCC. It's been showing a lot of promise, and we're really hopeful and excited about the prospect of getting him on it.

Right now we're waiting on the first post-surgical CT scan and then some blood work before he gets assigned to a cohort and starts the drug protocol. Those will probably happen while I'm in Okinawa, since I leave day after tomorrow.

The other change is that the RCC specialist running the trial actually had an opinion on Rob's probable rate of progression without treatment. Granted, kidney cancer is terribly unpredictable, so there are no guarantees either way, with or without treatment, but given Rob's blood work pre and post surgery, his general health, and the state of the spread, he felt that even without treatment, Rob would probably have a minimum of three years - not average, but minimum. With any sort of luck, we should be able to add to that time considerably, but regardless of how treatments go, minimum three years sounds a lot better than average of two.

I'm going up and down like a little emotional yo-yo right at the moment. On the one hand, getting into this trial, and the specialist opinion on lifespan are the best bits of hopeful news I've heard in ages. Preliminary results from the first trials for PD-1 suggest a 26% durable remission rate - up from 4% for the best treatment currently on the market - so I'm over the moon about that. On the other hand, our prospects are such that a 1 in 4 chance of not losing my husband young sounds wonderful, and sometimes that reality is hard to be cheerful about.

If everything goes as planned, Rob will probably be starting treatment in the trial in July or August. It'll mean a lot of distance driving to get to the university treatment center (about 3 hours from us), but well worth it.

The kids are being troopers about all the changes. Old enough to understand what's going on and try to help, young enough to be pretty resilient about adapting. The last day of school was today, and I think Rob is planning on spending some serious quality time with them while I'm in Okinawa. I hope it's good for all of them. I feel guilty about going, but Rob was pretty insistent that I not cancel and no new treatment decisions are likely to be made while I'm gone, and I could honestly use the break. I think the guilt comes because Rob needs a break even more than I do, but he can hardly leave his cancer behind and go vacation without it for a couple of weeks. Would that he could!
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Member Comments About This Blog Post
  • _LINDA
    Hoping that this trial will help Rob!!!
    Try to enjoy and focus on your experience in Okinawa, there is nothing you can really do for your husband (waiting is the hardest part) Make him and your children proud of you!
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    2532 days ago
    Sweetie, you are honoring your DH's wishes by going, and that's the best thing you can do. ((((HUGS)))) Praying for you all and hoping that this trial adds meaningful healing!

    2532 days ago
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