Consultations and infusion 55

For the past couple of weeks, my medical team at Kaiser Permanente in Virginia, Johns Hopkins in Baltimore, and NIH in Bethesda, have been reviewing my recent PET scan, comparing it to my other scans, and considering my therapeutic options. I exchanged several emails with my Kaiser oncologist, Dr. Iva Ferrera. She wrote that she was not convinced that the lung tumor was gone. Just because the Colorado radiologist had not seen it doesn’t mean it’s not there. She noted that a PET scan does not have contrast (unlike a CT scan), so it can be harder to make out smaller tumors. She thinks that no action is needed on the lung tumor, however, since it’s not of sufficient size to hit the panic button. She thought that I should wait and see if continued scans show if it continues to grow.

With regard to the supraclavicular node in my neck that is once again growing and showing active metastatic activity, Dr. Ferrera thought that I could also wait and see if that continued to grow. It’s not causing any problems right now, and it has a history of growing and shrinking. Alternatively, she thought that it could be treated with cyberknife radiation, since it is the only tumor of significance currently showing up on my PET scan. She also thought that there was the possibility that the lung tumor could also be zapped with Cyberknife radiation if it continues to grow. Before making a decision, she wanted to see what NIH said.

On Monday, December 10, I met with Dr. Andrea Apolo and her team at NIH’s NCI in Bethesda Maryland. She’s followed my case since April 2012, and I think that she is one of the most knowledgeable doctors in the world regarding current and cutting-edge treatments for metastatic bladder cancer. After I was screed by one of her fellows, she came in with her team to review my options. She said that she’d recently talked with Dr. Noah Hahn about my case, and that she said with a smile that she was not very impressed by my tumors. I told her that I was happy to hear that. (You do not want to have an oncologist tell you she is impressed by your tumors.) She didn’t think that I needed to enter a new clinical trial right now (yay!). She asked that I send her a copy of every scan so she could continue to follow my case, and we’d keep in touch by phone or email. If and when it’s time to start a new clinical trial – most likely a combination drug therapy trial – we’ll sort out the best drugs and which location at that time.

For now, Dr. Apolo recommended that I continue with my Opdivo treatments and taking a wait and see approach, with regular CT scans. I told her about Dr. Ferrera’s idea of having cyberknife radiation, and Dr. Apolo said that she was not opposed to the idea. Usually she would not recommend zapping individual metastatic tumors, but in view of my young age and otherwise decent health, radiation might be an option. She thought that it need not be immediate, however – I could do it in January or after my next CT. I thanked her as we hugged at the end of my appointment. I am so fortunate to have such a skilled practitioner as part of my team.

On Wednesday, I went into Kaiser’s Tysons Corner facility for nivolumab infusion #55. As usual, it was unremarkable: IV placement, 30 minute drug push, and done. It likely will be the last time that I’ll get an infusion in Virginia, since effective next year I’ll be changing to a Utah-based insurance policy. Notwithstanding my recent adventure with Kaiser in Denver, I’ve come to appreciate the care I’ve received of the past three years from Kaiser. When I first enrolled in Kaiser’s Medicare Advantage program in 2016 after formally retiring from my law firm, Kaiser noted that I was in a clinical trial with Johns Hopkins and also enrolled me in the Kaiser Family Foundation medical assistance program, which covered all of my deductibles and copays. So for the past three years I have not paid a penny for any of my treatments – Opdivo, or scans, or other medications. And the care that I have received from my Kaiser oncologist (Dr. Ferrera) and my primary care provider (Dr. SummerAbdel-Megeed) has been as good as any doctor I’ve seen.    

But alas, Kaiser is not in Utah, where I’m now spending most of my time. Shopping for a new Medicare Advantage policy was a bit of a pain. I first had to find a policy that covered the oncologist that I intend to see (Dr. Ben Maugham). Then I needed to find out who much I’d be paying for coverage, which is the sum of my monthly cost, the copays, the deductibles, coinsurance, and whether Opdivo was covered. As near as I could tell, Opdivo is not on any of the insurance company formulary lists of approved drugs. To find out whether it is covered or not, I’ve had to call each company, educate the rep about the drug, and learn the coverage limits. I’ve learned that Opdivo is not considered a Medicare Part D drug, because it’s given by infusion in a doctor’s office. That makes it a Medicare Part B procedure. The drug component of the procedure is subject to an 80/20 split, with me paying the 20%, up to the amount of the annual out-of-pocket maximum. The policy that I finally settled on has an OOP max of $4900, which I’ll probably hit in the first month or two of 2019.

This morning I met with Dr. Ferrera. I’d already sent her an email updating her with Dr. Apolo’s thoughts. We considered setting up the cyberknife appointment for next week, but I decided to wait until after the holidays and will follow up with my new doctors in Utah next year. I thanked her for her outstanding care and coordination with my other doctors. We hugged and I told her I’d give her a shout out in my blog. Everybody now: Yay for Dr. Ferrera!

Update on Jennifer

From time to time I've mentioned my wife's recent struggle with cognitive difficulties. From her sudden onset of catatonia 14 months ago, she's gone through seven extended hospitalizations, evaluations by more than 20 doctors at 6 different hospitals, and more than 20 different drug regimens. No one has been able to agree on a diagnosis, and none of the drugs have helped. We transferred her to a memory care facility this summer, since she needed more care and support than I could provide at home.
 

Jennifer has been in the hospital for more than two months. She had become increasingly unstable while living at the memory care facility, and her doctor wanted to adjust her medications while under observation. She also had another round of scans and tests as a team of doctors tried to arrive at a diagnosis. The only thing that everyone agrees upon is catatonia. But everything else about her condition is atypical and defies a diagnosis of dementia or depression or any other label. Her doctors now theorize that in September or early October 2017 she had some kind of infection – perhaps a virus of some sort – that caused some permanent changes in her brain chemistry and electrical structure. For the past two months her doctors have tried multiple drug therapies, none of which have worked. The doctors now believe that her recovery is unlikely, and that she likely will require assistance for the rest of her life.

On Sunday I had a conference call with my four children to discuss their mom’s poor prognosis, and make some decisions about her future care. We arrived at a consensus to look for ways that Jennifer could be discharged from the hospital, receive the appropriate level of care, and be given the opportunities to find joy in life however she can. Over the past couple of days I’ve spoken with multiple people to determine if we can arrange 24/7 one-to-one support by aides and techs at an appropriate facility. It’s been a dizzying education on the limits and gaps in our health care system in caring for people with cognitive difficulties. I'm applying all of the lessons I've learned from my cancer journey to advocate on my wife's behalf. Please keep Jennifer in your prayers – she (and I) need all the help we can get.