Wednesday, September 14, 2016

Next?


Waiting for just the right time to write a new post didn’t pan out as a productive strategy, so the time is now, right or not. My husband Sam and I spent most of May on a once-in-a-lifetime trip, combining a thirteen-day transatlantic cruise with another ten days split between London and Paris. Needless to say, it was fantastic. I had been taking Afinitor since the previous December. That’s a targeted therapy for my renal cancer. I’d switched to that after the previous drug, Sutent, produced serious side effects—the most significant being necrosis of the jaw where I’d previously had radiation therapy for an unrelated cancer more than twenty years ago.

I had purposely delayed a follow-up CT scan until after the trip, remembering that when I began this cancer journey a year earlier, we’d had to cancel a planned tour of Italy. So in June I had the new CT scan, and the results were mixed. Some tumors had shrunk, some had grown. That was an indication to my oncologist that Afinitor had run its course as an effective treatment. What next?

Progress is continuous in the field of cancer treatment. A year ago—even less—immunotherapy was still making its way through the approval pipeline. Now, fortuitously, it was ready to be used to treat kidney cancer. On August 23 I had my first infusion of the immunotherapy drug Opdivo. Additional infusions would follow every other week. The first infusion was administered on a Tuesday morning. By evening I was running a fever of 101.7 F and aching all over. My fever was slightly lower by bedtime, and the next morning I was feeling relatively normal. Subsequent infusions to date have produced no discernible reaction, thankfully. (That relative stability emboldened me to take my godson on a weeklong trip a couple of states away to visit relatives.)

Unfortunately as this new therapy was getting underway, pain in the area where my left kidney had been removed—now the region of the central tumor, from which the metastases have spread—had begun to increase. Trying to control the pain progressed through several painkillers: Norco, Percocet, and now a combination of a Fentanyl patch and Percocet (7.5-325). The Percocet is for when the patch isn’t enough and is prescribed for every four hours. Most days I need the Percocet around the clock.

This past Friday I woke up experiencing shortness of breath and a sharp, stabbing pain in the left side of my chest. Off to the Emergency Room. After a panoply of tests, the conclusion was that I was developing pneumonia in my left lung. (This was the same day Hillary Clinton was diagnosed with pneumonia. I don’t have anything like her stamina.) I was prescribed an antibiotic and went home. However, as I read about the antibiotic I became concerned about the potential side effects. So on Saturday morning I called my family practice doctor and obtained prescriptions for two antibiotics that I'd previously used without a problem.

On Sunday I was again (still) in distress with shortness of breath, so we went back to the ER. This time, along with other tests, a CT scan was done to rule out a pulmonary embolism (blood clot in the lung). More antibiotics were administered by infusion and, absent any other evidence, the diagnosis of developing pneumonia was held.

On Monday I followed up with a visit to my oncologist, who voiced skepticism about the “developing pneumonia” diagnosis and set in motion a consultation with a pulmonary specialist. That is still in process.

On Tuesday I followed up with my family practice doctor, who ordered lab work to rule out congestive heart failure but speculated that the real cause for shortness of breath may be the increased growth of the cancer, particularly metastases in the left lung. Results for the congestive heart failure were negative.


My oncologist has suggested that, although some increase in some tumors has occurred, it is too early in the Opdivo treatment to conclude that it is not working. But that still leaves the shortness of breath to be addressed. So...next?

5 comments:

  1. Well, Donovan, you have Ben through the mill and compounded by multiple caregivers and differing ideas of what is going on. It's a difficult medical jungle. Be a good patient and an even better advocate for yourself. Keeping you in my thoughts. Sandy

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  2. I'm keeping you and Sam in my prayers daily. I'm glad you aren't just accepting what is given you, but continually researching it. God bless you.

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  3. Donovan, you lay this all out so clearly and calmly, so that all of us holding you in our hearts and in our prayers can understand. Thank you. Sending you light and love and hopes for easier breathing. Mary❤️

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