Flying Blind

I have been grounded on my clinical trial since May 1st due to a “Significant Adverse Event” from my last infusion of the oncolytic virus. That infusion resulted in me spending a lovely overnight in the ER at Banner University Hospital. The infusion reaction combined with my chronic cough caused Dr. M to call a “time out” for Jimmy. The break meant I had to miss my second round of the immunotherapy drug, Opdivo, which is not good.

During the time out we also received my first CT scans since I started the trial. These showed about a 15% increase in tumor size with some new baby tumors in my lungs. Bad news again. I also saw a pulmonologist and had a bronchoscopy on Wednesday. The bronchoscopy reduced my cough, but I will probably always have some degree of chronic cough. The coughing is most likely a result of chemo treatment that caused multiple lung infections. Ah chemo, the gift that keeps on giving.

So these past two weeks we had lots of time to ponder. Would they drop me from the trial? If there is too much disease progression that’s what usually happens. Would they drop me from the trial because of concerns about my lungs? Opdivo can cause lung damage. Was the condition of my lungs too risky to remain on the trial?

Fortunately for us, our neighbors Barb and Joe, brought us a Maeki-neko, a “Beckoning Cat,” back from their cruise around the world. This Beckoning Cat hails from Japan and brings good fortune. It seems to be working for all of us, including our fuzzy feline Cotty who is battling lymphoma. Today, we finally got some good news. FullSizeRender (11)

Lee and I had a meeting with Dr. M this morning and the trial is a GO again. My next Opdivo infusion is scheduled for Tuesday, which just happens to be our wedding anniversary. Pretty romantic, don’t ya think? I am going to pull out all the stops and buy Lee a latte from the cafe and a “cancer sucks” T-shirt from the cancer center gift shop.

We still don’t know if there is actual disease progression. Dr. M thinks it is pseudo disease progression. This occurs when the immune system is attacking the tumors making them look larger on CT than they actually are. Only time will tell. We don’t know if the Opdivo will further inhibit my lung  function. Only time will tell. We haven’t received the results of the last lung biopsy which we hope will reveal how the oncolytic virus affected it. I do know that other than a cough, I feel great.

There is a lot I don’t know at the moment. I’m flying blind…..but at least I’m flying!

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21 thoughts on “Flying Blind

  1. sounds good. another round of opdivo but not more killer virus. right? happy to hear you feel pretty good. happy anniversary. number 18, i think. that was a fun wedding. i had not heard about ‘destination weddings’ at the time but napa is your kind of destination. hope cotty isn’t jealous of the beckoning cat. he knows he’s #1 kitty.

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  2. That “Beckoning Cat” has that Japanese world cruise appeal that keeps you waving a paw. A lot of investigative work being done on the world cruise of Jimmy A & you might not be flying blind. Blindsided yet you feel good with a side of cough with the 18th anniversary to Lee in your headlights. That Lee & Cotty & Marian & all your “Gang” that you drink the most incredible Vino with is such a blessing. Your significant adverse event altered timing, but did not throw you out. Your CAPE has withstood these howling winds & wishing you a wonderful Anniversary with Lee.

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  3. Hoping your next set of testing goes purrrrrrrrrrrrrrrrfect for you. Congrats to you and Lee on your upcoming Anniversary. ANOTHER kitty???? Cotty called me last night to COMPLAIN.
    My best to all of you. Sandi B.

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  4. So good to hear about the flight pattern and that you are able to be on board. Congratulations to the two of you. You are a blessing not only to each other but to those of us who have gotten to know you.
    Enjoy your anniversary, the day and the “toast” wherever and with whatever it might be.

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  5. Happy anniversary! I have to say you are a trooper!!!
    Gary will celebrate your day by going to Banner for his bi-annual brain MRI.
    Yesterday we played golf-well, I should say played at it. Formerly a scratch golfer, Gary is not pleased with double bogies. The Tarceva is causing some neuropathy in his legs.
    We are also looking at a trial up at Fred Hutch in Seattle. It is cutting edge, using T cells.
    But, for today, we will keep on keepin’ on.
    I want one of those tee shirts- “cancer sucks!”

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  6. I am grateful that you have Lee and Cotty in your life. Continue what your are doing; finding joy in each day, plan some fun. Find someone to hang out with you and distract you so Lee can catch a break. God Bless you both. Sandy H.

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