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.

Staying Positive

A lot of people whom I respect and trust have encouraged me to stay positive as I go through treatment for metastatic melanoma. Attitude is extremely important, they say, and I believe it because I've said the same thing to many people. I've also had to remind myself from time to time.

However, staying positive can be difficult, even for someone whose natural inclination is to look on the bright side. For me, I learned in one fell swoop that the melanoma had spread from my left kidney to my liver and lungs and pancreas and colon. There were malignant tumors along my spine and underneath my right arm, and there was a smattering on my brain. The point is that a diagnosis of cancer, especially Stage 4, is scary. I described my full reaction to the news in Melanoma without a Cause, so I will just mention here that the diagnosis left us trembling in its wake.

I don't remember any commitments to be positive in those early weeks. I didn't claim "I can beat this!" Nor did I look in in the mirror and say, "You're a goner!" When we emerged a little from the emotional fog, Elvira and I decided that, to the best of our ability, our approach would be practical. We decided to treat the experience as a project, like we used to get at work. Sure, emotions would be swirling in the background, occasionally breaking through, and there would be moments of deep depression when it felt like all was lost. But we always came back to the series of tasks we needed to get through for our project.

Sometimes, I didn't do well, like when the side effects from the combination immunotherapy treatment were so severe that I couldn't eat or drink. But we didn't change our approach. We tried to figure out other ways to get me the necessary nutrition and hydration. All we could do was our best.

I'm not saying this attitude was the key to getting better, and heaven knows I still have a long way to go. But being practical, focusing on the daily tasks that comprise this project may have kept us sane. It may have helped us stay positive, as much as that was possible. And it gave us something to think about, one day at a time.

Pigtherapy

As you can see from the photo, Big Pig got a hold of my iPad and read the report from my latest series of tests before we did. He was, of course, trying to shield us from any bad news, but fortunately there was no need. The PET and CT scans of my body and the MRI of my brain show no new cancer anywhere and continued reduction of cancer on the kidney, which was probably the first stop for the melanoma train in my body. According to the oncologists, these results suggest that the Opdivo continues to work. Very good news indeed!

It has now been a year since I started treatment, with a bunch of ups and downs as described in Melanoma without a Cause. Lately, the news has been all good, as the immunotherapy drugs, supplemented with acupuncture, seem to be derailing the melanoma train. It has not crashed and burned yet, but we re hopeful. Elvira and I are very thankful not only to the doctors and RNs who have treated us, but to all those who give us support. As I hope you realize, the emotional/mental part of this "adventure" is really important in making progress and maintaining a positive attitude as we begin Year #2 of treatment.

I continue to receive occasional notes from people around the country who have read my postings on cancer sites. The most recent is a patient from Nashville who gets treatment at Vanderbilt. He has been on the same regimen as I have for about six months longer, which means he was one of the true trailblazers. He says that he continues "...to respond positively to the drugs and my tumors continue to shrink with almost no side effects." Good news for him and for all of us who are going through this amazing immunotherapy treatment.

I have also received notes from Cancer.net, which may run my guest post in July, and the American Cancer Society, which plans to run our story in one of its newsletters, The Benefactor, in mid-August. I'll keep everyone posted. I appreciate your following my blog!

What a Long, Strange Trip It's Been

Yesterday, I had an appointment with the doctor (Dr. Uro in my book) who discovered my melanoma. I still remember his shaky voice as it came over my phone's speaker. He said the word, and neither Elvira and I could believe it. We asked him to repeat it. He did, and still it didn't register. The third time he pronounced each syllable slowly and distinctly, "Mel-a-nom-a".

It has been a little more than a year since I saw Dr. Uro. He smiled broadly when he walked into the exam room and shook my hand. He has been going through treatment for prostate cancer himself, and we talked briefly about our experiences. After his exam, which revealed no surprises, he reviewed my case on the computer for a few moments before taking a deep breath and saying, "You are a lucky man." I agreed with him wholeheartedly. He made an appointment for me a year from now.

"You will be here," he said optimistically.

"So will you," I replied.

We discovered over the past two weeks that several other friends have also received a cancer diagnosis. For all of them and Dr. Uro, we send our best wishes.

As for my treatment, everything went well. I am now scheduled for an MRI on June 8 and a PET scan on June 12. My appointment to learn the results of those tests is June 14.

As Andy Dufresne says in the Shawshank Redemption, "Hope is a good thing, maybe the best of things."

American Cancer Society Article

The American Cancer Society has written an article about Elvira's and my adventures with immunotherapy and made it a Top Story in the Stories of Hope section. Please check it out!

Staying on Track and Chewing Longer

Elvira and I rode the rickety elevator to the second floor, where we passed through a short hallway to the Oncology/Hematology Department. Familiar faces met us there and checked us in.

We had brought reading material (Louise Penny's mysteries), but I barely had a chance to open my book before a nurse called my name and took me in to check my weight, oxygen level, blood pressure, and temperature. All okay, except my weight had leveled off over the past two months. I could use a few more pounds because it's been very windy in Santa Barbara lately.

I returned to the waiting room, but once again it was only a minute until the nurse returned and escorted us to Dr. Onco's office. (Dr. Onco is the name I use in Melanoma without a Cause.) It was not a big office and sparsely decorated, but I imagine the department chair will have a larger office with a better view in the new Cancer Center being built down the street.

Dr. Onco reviewed the results from my blood work and saw no problems. He mentioned that he had attended a conference recently where the variables associated with immunotherapy were discussed, including the critical question of why the drugs work on some melanoma patients and not others. Immunotherapy treatment is so new that many aspects of it are still puzzling, and researchers are apparently busy collecting and comparing data from people like me.

Which may explain why Bristol-Myers Squibb has contacted me, requesting access to my medical records. Actually, I contacted the company first on their public website, thanking them for producing drugs that have had such a beneficial effect and telling them I'd like to send a copy of my book to the CEO. Their response didn't explain why they wanted access to my records, but of course I was willing to provide it. I just wanted to check with Dr. Onco first, and he said, tongue in cheek, that maybe they wanted to use me in one of their Opdivo TV commercials. I replied that if that was true, I would only agree to appear if he went with me.

After confirming that I was still on track for scans in June, he approved me for treatment. Chris was the R.N. who set me up for my dose of Opdivo, which would take about an hour to pump into my veins. My veins seem to be getting harder to pierce, for both the lab techs and the oncology R.N.s, and he tried my hand as an alternative to my wrist or the crook in my arm. The vein resisted, however, and he reverted to my arm. The needle went in there surprisingly easily. Go figure.

While I was receiving my treatment, a Sansum dietitian named Sarah came in to offer suggestions on my diet and answer any questions we might have. We talked about what I've been eating and how I might enhance my diet to gain weight. She had good ideas and was more helpful than any other dietitian or nutritionist I'd ever met. When I told her that my sense of smell was basically non-existent, she said that I could smell my food even as I was chewing it because there was a passage to the olfactory system from the mouth. It was possible, she suggested, for me to enjoy the flavor of my food more if I chewed it longer. Interesting . . .

When Sarah left, it was countdown time for my treatment. I'm always a little nervous before and during my treatments, and always eager for them to be done. Finally, the pump beeped, and Chris came in to flush the drip system so that I would get every little bit of the Opdivo. A few minutes later, Elvira and I walked out of Sansum and high-fived. We had taken another step toward recovery.

One day at a time.

Interesting Immunotherapy

It's been almost a year since my diagnosis of metastatic melanoma. A tough year, for sure, but also a year of tremendous progress. My vital signs were good yesterday when I went in for my treatment, and Elvira drove me home afterward, full of Opdivo and positive thoughts.

I've been posting my immunotherapy story on national cancer sites, and representatives from three of them have contacted me. AIM at Melanoma has invited me to attend a conference, Cancer.Net has asked me to do a guest blog, and the American Cancer Society interviewed me for an article in its Stories of Hope series. This interest seems to stem from the newness of immunotherapy and the possibility that it will be a viable long-term treatment not only for melanoma, but for other cancers as well. Let's hope so.

I've also heard directly from a few people who are dealing with a diagnosis like mine and have read Melanoma without a Cause. One couple was just beginning their fight against the disease and wanted to know more about immunotherapy from a patient's perspective. Another couple was a lot like Elvira and me, close in age with an active life style that has come to a screeching halt. They seem like very nice people, but like us, have a long way to go in their journey.

Do I believe immunotherapy is truly a miracle drug? Do I believe I'll go into remission and have many more years here on earth with Elvira?

Absolutely!

As Hub (Robert Duvall) in the movie Secondhand Lions says to The Kid, "Sometimes the things that may or may not be true are the things a man needs to believe in the most."

When Pigs Swim - in the Treatment Room

The photo for this post features the Swimming Pigs of the Bahamas. These photos adorn the walls of Elvira's favorite treatment room at Sansum, where I received my infusion of the remarkable immunotherapy drug Opdivo on Wednesday. We consider it a good omen whenever we are assigned to this room, and all went well this week.

It has now been approximately eleven months since I was diagnosed with metastatic melanoma, ten months since I started combination immunotherapy at Sansum Clinic in Santa Barbara, seven months since I completed the combination regimen and went on prednisone, and six months since I stopped prednisone and started the single dose regimen of Opdivo. (These experiences are described in my book, Melanoma without a Cause.) It has been almost a year of upheaval, but I'm feeling good and all indications are that the immunotherapy continues to work. My next CT and PET scans and MRI are scheduled for June.

Of course, there has been an emotional toll for Elvira and me, as well as the physical one that I've experienced. While we are thrilled that the immunotherapy is available and I seem to be improving all the time, the weight of the disease remains with us. What do you do when you wake up every morning knowing you're living with what's considered a terminal disease? I have no good answer to that question. The best and most consistent advice I've received has been to remain positive. It's important to believe you can get better, believe in the drugs and the doctors, and believe that the miracle drugs will actually deliver a miracle.

It's my new reality and I need to accept it. Life can still be good, as Elvira's presence constantly reminds me. But remaining positive can be struggle, even while things are getting better, and it's a struggle I don't always win. But I will keep trying and keep believing, and I will keep writing about it here in this blog.