Just To Be Safe

The picture associated with this post shows Elvira taking Olive into waves for the first time. It has nothing to do with our visit to UCLA on June 11, but it does give an idea of how we've been spending our time between visits, enjoying our puppy as well as our life here in Santa Barbara.

I could say the UCLA reports were ambiguous because the melanoma expert and neuro-oncologist agreed that, just to be safe, they wanted to wait until I had a full 52 Opdivo infusions before recommending that I be taken off treatment and declared "in remission". But there was no real ambiguity. The scans and the MRI were clear. The esteemed doctors stated categorically that I showed no sign of cancer either in my body or my brain. They reaffirmed that I was on the right path. No hiccups or problems found.

So, why did they recommend I should have eight more infusions? The answer is a technical one. The protocol for immunotherapy used to be to take it until it didn't work anymore. Then, about a year ago, the research suggested that in cases where the drugs are working, they only needed to be taken for two years before the patient's immune system could take over on its own and protect the patient's body against melanoma.

The protocol was clear except for pinpointing when the two-year clock starts. Was it two calendar years that the patient needed to be on the drugs? Did the four combination treatments at the beginning count, or was it just the Opdivo-only treatments?

On June 11, the melanoma expert's "instinct" was that I should be on the bi-weekly Opdivo treatments for 52 weeks before they stopped. Elvira and I looked at each other, and like so many other times when we've had to adjust our expectations and accept a reality that is not perfect but is awfully doggone good, we agreed with a smile. Eight more treatments to be considered cancer-free and not needing treatment  is an easy adjustment to make, given where I was two years ago. We're planning on more beach visits with Olive, more bike rides with her in the trailer, and more great visits from Michael and Brian like the one we had yesterday on Father's Day.

I think we can take it.

Eight Days a Week

The pic shows Elvira on a walk with the newest member of our family, Olive the Corgi. They both bring great joy to the household, where we had a flurry of medical events between March 19 and March 26.

I had a follow-up MRI at UCLA on Monday the 19th. After my September MRI in Santa Barbara showed a spot on my cerebellum, I have been down to UCLA several times to see the neuro-oncologist, who concluded - along with the UCLA tumor board and melanoma expert - that the spot was necrosis, a kind of scar tissue from my radiation procedure in 2016.

While Elvira stayed with the puppy, I traipsed down to UCLA and received good news from Dr. Pouratian: no change in the necrosis. If it was cancer, the spot would almost certainly have grown. Was it disappointing that the spot wasn't gone when they checked? Of course. We want everything that could be cancer to be gone immediately. But that's not realistic, so we will gladly accept "no change".

Feeling good about my brain, I had the rest of my body checked on Tuesday with a CT/PET scan. The Nuclear Medicine Unit at Sansum was very busy, and it took most of the day to complete the scan. That turned out to be okay because Elvira remembered to ask about the prescription glasses I'd lost about the time of my last CT/PET. The employees finally had an answer to who belongs to the glasses that had been sitting beside a time clock for three months.

More importantly, Dr. Abate interpreted the scans for me the next day. Once again, the magic phrase: no change. Once again, it was good news. The bottom line is that they found no new cancer, no melanoma sneaking off to some hidden recess and starting to build up its momentum again. There is still the residual spot on my kidney picked up by the CT but not taking any PET. Presumably, if it was cancer, it would take the PET. As with my cerebellum, we don't know for sure, but no change in this instance is a very good thing. I went upstairs for my Opdivo infusion a happy man.

I had a dermatological exam scheduled for Thursday, but the dermatologist called in sick. I did my own exam that day and found nothing suspicious, but I saw nothing suspicious in 2016 when this whole mess started, so what do I know? In any event, the expert will see me in April and - hopefully - confirm that there is no change.

On Friday, I saw Gayatri for my acupuncture session. It was a total-body mellowing experience as usual, but the highlight was that Elvira brought Olive to meet her. They hit it off splendidly, though on the walk afterward, Elvira said Olive was unnerved by two barking Chihuahuas. The only rational explanation is that they were in a yard above the sidewalk, so Olive probably thought they were about 12 feet tall.

Finally, to finish my eight-day week, I had a colonoscopy/endoscopy yesterday, the 26th. I was due for both exams, but the timing is good here because it's another check that cancer has not meandered into another part of my body. Dr. Hahn said everything looked good afterward, but I won't hear the official results for another few days. We're hoping for no change.

At this point, Dr. Abate believes I'm still on track to be taken off the immunotherapy drugs in June. As always, we'll take it one day at a time and remain thankful for each one of those days, as well as Elvira and Olive and all those who bring joy to my life.

Wildflowers and a Wild Ride

The photo above was taken by Elvira and depicts wildflowers found here on the Central Coast. Since this pretty photo was taken, we have experienced many twists and turns in my health care. The most important fact is that the specialists do not believe I have had any new melanoma growth in my body or brain since I started immunotherapy treatment in June 2016. That's very good news, of course, and we look back at the confusion since I last wrote in October much more tolerantly with this knowledge.

The confusion to which I refer began with the interpretation of my September MRI, which showed a spot on the cerebellum where I had radiation for a small tumor in June 2016. My oncologist thought it was necrosis, which (as I understand it) is dead brain tissue causing inflammation of the brain. The oncology radiologist thought it was cancer and passed the MRI on to the local neurosurgeon, who agreed it was cancer but didn't think surgery was warranted. The oncology radiologist then scheduled me for another radiation treatment, but before that happened, I was referred to the melanoma specialist at UCLA. He said, in his thick but pleasant Polish accent, "Stop everything!" He was not convinced it was cancer, so he referred me to yet another doctor at UCLA, a neuro-oncologist, who did another MRI.

We received the results of the UCLA MRI on November 27, more than two months since the original MRI. This time had been stressful for Elvira and me because we didn't know if I had new growth of melanoma on my brain. But the neuro-oncologist put our minds at ease (mostly) when he said the spot hadn't grown in two months, which probably means it's necrosis and not melanoma.

Needless to say, this is a tricky, unpredictable, sinister disease that only pretends to be under control. You have to watch the bastard every minute! But as this incident shows, my doctors, even when they don't agree on a diagnosis or treatment, are making every effort to stay one step ahead. They are watching carefully and testing for any changes in my body or brain. Despite the unsettling situation over the past two months, I am very grateful to all of them for their vigilance.

And so, we go on. I'm feeling good and eating well, and Elvira and I are back to golfing and walking after the destructive fire in Ventura and Santa Barbara Counties. Our best wishes go out to all who suffered losses in this fire. My CT/PET scans on December 17 remained unchanged from the ones in June and September 2017, which means they look clear except for one spot on my kidney that does not light up with the PET - suggesting it's not cancer, but they can't be sure without a biopsy. I have another MRI scheduled at UCLA on January 22, when the neuro-oncologist will check to make sure the spot on my cerebellum has not grown.

Vigilance is a good thing. And so is all the support I continue to receive from family and friends. Thank you! I'll try not to wait so long until my next post.

It's Not a Too-mah!

Actually, it is a too-mah.

It's been a long time since I posted anything because I was waiting for clarity. I should know better.

My change in circumstances began on September 20, when Elvira and I learned from my oncologist that my MRI revealed an anomaly on my cerebellum, near where I had melanoma last year. The growth at that time was zapped using a process called stereotactic radiosurgery (SRS), and subsequent MRIs for more than a year had shown no evidence of melanoma on my brain.

To put this news in context, my CT and PET scans, taken the day before the MRI, showed no melanoma. There were still spots on my kidney, where the original mega-tumor had been, but the PET did not light up, indicating that the spots were probably not cancer, but residue from the tumor. Also on the good news front, the proximity of the new tumor to the old one suggests that the new tumor grew from cells not destroyed by the last SRS procedure. That's good news because it would mean the growth is not new cancer.

After some confusion concerning the referral process, I returned to the oncology radiologist who had done the previous SRS procedure. He was hesitant to repeat the procedure because the new tumor was very close to the one he had zapped before. He referred me to a neurologist, who thought the SRS procedure could still be effective and safe, kicking the case back to the radiologist. And there it sat, while the tumor grew at unknown speed, for two weeks, despite repeated phone calls from me asking whether they recommended SRS or brain surgery. My oncologist was waiting for their recommendation as well.

Finally, yesterday, Elvira and I met face-to-face again with the radiologist, who had re-examined my MRI. He stood by his opinion that the old and new tumors were close, but now recommended that we go ahead with the SRS. It would be just as effective and pose less risk than surgery.

We asked four thousand questions, or thereabouts, before agreeing with him and signing up for the SRS. We did ask for my case to be fast-tracked before the tumor began growing out of my ear. The next day, which is today, I received a call to come in tomorrow for my SRS prep meeting. Hooray!

These are all good doctors, wonderful doctors. But if there's a message in all of this, it's probably that even with the most skilled and conscientious of medical personnel, patients need to keep pushing and not depend on good communication among different doctors. For us, it took more than a month, but we have a plan in place. Elvira and I are ready for the next subway stop on the Cancer Line.

Oh, and lastly, I also have an appointment with the colorful and brilliant melanoma expert down at UCLA on Halloween Day. I will report on his costume in my next blog.

Getting the Word Out on Immunotherapy

Greg Guthrie at the website, Cancer.Net, has published my guest blog. Please check it out. FYI, my last treatment went fine, and Elvira and I had another golf outing this week. Together, we had four pars in nine holes!

"What a Shit!"

About 10 years ago, a French scholar named Francis Jaureguiberry from the University of Pau came to UCSB for six months to conduct research on technology and communication in the U.S. My job was to secure his housing and smooth over the inevitable university bureaucracy. He's an extremely down-to-earth fellow with a lively sense of humor. After he got to know us, he enjoyed practicing his English with Elvira and me. He also loved hang gliding and had brought his equipment from France to fly above Santa Barbara in his spare time.

Francis' stay in the U.S. ended earlier than expected. He was running at top speed in preparation for take-off from a local hill when he stepped in a gopher hole. The glider kept going toward the precipice, but Francis' leg was stuck in the hole. It took a medical helicopter to get him to the hospital. and years of knee surgeries followed the incident.

Well, Francis recently learned via Facebook that melanoma had invaded my body. He sent a very nice note and summarized the situation perfectly with the phrase, "What a shit!" I couldn't agree more. And if you read this, Francis, let me add my belated assessment of your hang gliding accident:

"What a shit, too!"

My Opdivo treatment yesterday went well. My oncologist seems pleased with progress and is planning a re-evaluation after my scans in September to determine the next phase of treatment. In the meantime, Elvira and I plan to go to the Music Academy of the West opera tonight at the Granada and continue our usual walks at Shoreline Park. Peaceful days with a bit of exercise are a beautiful thing.

Looking for Peace

It occurs to me that this cancer trip is like driving a formerly reliable but now sketchy car on a winding road late at night through a heavily wooded area in icy conditions. The doctors have recommended this road, which could lead us out of the dark forest to a sunny meadow brimming with wildflowers. But no guarantees. And it can be a very long road with sharp turns and unexpected hazards.

For the first few months after my metastatic melanoma diagnosis, it felt as if Elvira and I were just trying to avoid a crash. We hit black ice several times, sending the car skidding across the road. We almost ran out of gas before my combination treatments were done. Car parts grunted and groaned as we moved steadily forward, but nothing broke. At least, nothing essential.

Yesterday, my oncologist provided a peek at what might be down the road. He mentioned the possibility of sending me down to a UCLA melanoma specialist (the same one in Melanoma without a Cause) to explore next steps. With no new growth and apparently only one tumor showing remnants of disease, the question is whether my immune system is sufficiently tuned up by more than a year of treatment to keep me on the right road. Advances in immunotherapy also give doctors more treatment options.

This view of future treatment is exciting, but we cannot look too far ahead. We need to keep our eyes on every inch of the road even to have a chance at seeing that sunny meadow. But having a chance is all we ask.