October 23, 2020 – This afternoon, I completed my second round (infusion) of Keytruda (pembrolizumab) at West Cancer Center’s main campus. Keytruda, as I’ve explained previously, is an immunotherapy medicine – meaning it boosts the body’s natural immune defenses in order to fight cancer.
My new treatment regimen is based on science, real science. Not conspiracy theories, not voodoo doctors who believe in alien DNA, not off-the-cuff comments about drinking bleach to kill a virus. Real science.
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| Up the steps to the unknown. |
Immunotherapy treatments are relatively new. Keytruda was FDA-approved in 2014 and by 2017 was in use for solid metastatic tumors, like melanoma. The U.S. approval and testing process is long and somewhat complex. Clinical trials can take years to complete.
I volunteer my time by working on scientific review panels that evaluate research proposals for possible funding grants. I’ve been a part of this process for a couple of years now, and it is a tremendous honor to be a “consumer advocate” and share my impressions (and concerns) with cancer doctors and researchers. This is one of the many ways I give back to the melanoma (skin cancer) community.
I want to ensure that melanoma prevention and treatment moves forward towards a potential cure and the funding of this research remains apolitical. Scientists need to be able to do their work – without threats and without undue influence.
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| A long day. |
Although the Keytruda infusion typically lasts only thirty minutes, my October 23rd visit was over three hours. Blood work, IV insertion, oncologist visit, scheduling (and re-scheduling), waiting on lab results, pharmacy prep work, a flu shot – all took place before my infusion.
Sitting in the third-floor infusion area was both odd and sad. Memories of waiting in this area while Emily received her chemotherapy treatments brought a flood of emotions. I’ve been a stage IV cancer patient for a long time, but I’ve never had intravenous treatment. The infusion area is a dull, sterile environment. It’s sad watching folks from all walks of life undergoing treatment. We have one thing in common–however–we all have cancer.
At the same time, watching other patients hooked up to IV machines and monitors reminded me that we’re fortunate to have researchers, scientists, technicians, nurses and doctors working hard to find new and better treatment options and, maybe one day, a cure.
Real research. Real progress. Not just talking points during a political campaign.
Real science.
Thanks, as always, for listening.
After confirmation that melanoma had spread to my right adrenal gland, we were faced with a couple of options: remain on Gleevec and receive radiation therapy or try something new – immunotherapy (described below).
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| Waiting on treatment. |
Initially, we opted to try radiation therapy. The idea was to target the adrenal gland, which would be – we assumed – less invasive that starting an entirely new regimen. After meeting with the radiation oncologists and consulting with some other folks, we decided against that route. There were too many outcome variables and too many negatives (potential damage to surrounding tissue and organs).
We just couldn’t get comfortable with that option.
Up until we left on our Blue Ridge vacation (see Facebook), we continued to struggle with our first option. Several online consultations, emails with others in the melanoma community, and, simply, time to reflect brought us to a new decision: no radiation therapy, stop the current oral chemotherapy, and start immunotherapy once we returned from vacation.
I feel good about the decision. Vicki feels better about the decision to go with immunotherapy. And our oncologist assures us that if immunotherapy doesn’t work, we can always go another route.
According to the American Cancer Society, immunotherapy medicines stimulate a person’s own immune system to recognize and destroy cancer cells more effectively. Several types of immunotherapy can be used to treat melanoma.
Immunotherapy medicines are given intravenously, so that’s another turn in my treatment. Today, I started Keytruda (pembrolizumab), which will help my body fight the melanoma without destroying any existing, healthy (normal) cells.
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| A new turn in my journey. |
Another positive aspect of our decision is that Keytruda will also fight the tiny melanoma tumors in my lungs. There’s no guarantee that they will be completely gone, but our hope is that they continue to stay small, or even shrink a little more.
Thanks, once again, for your thoughts and support. We truly appreciate it. As my treatment journey continues, there will likely be more frequent updates.
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| Everyone should have a view like this. |
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While, initially, this news was distressing, it didn’t come as a complete shock. All summer, we’ve been wondering what caused the sizable blood mass in and around my adrenal gland (see Doctor Doctor…). Now we know. Melanoma some how made its way to another part of my body.
Frankly, since early June, I’ve expected this outcome. It’s the reality of living with cancer.
With this sad news comes several positive developments. First, the PET scan (see The Waiting…) was negative for any additional cancer spread. That’s important because we want to keep the cancer contained as much as possible. In other words, right now, only two places inside my body have malignancy – my lungs and my right adrenal gland.
Second, the metastases around my adrenal gland, according to biomarker testing, contain the same genetic mutation (cKit) as the tumors in my lungs. That’s also important because we’re only dealing with one type of cancer (again, see The Waiting…).
Which leads to another (hopefully) positive development…we will continue my current treatment regimen – daily oral chemotherapy medicine (Gleevec) – with a new component: radiation therapy to tackle the adrenal gland.
This post will be short and sweet. Many things are coming together even as I write this. I’ll provide more details in a follow-up post (Another Twist, Another Turn).
This is yet another twist and another turn in my melanoma journey. I’m confident the journey will continue for many years to come.
I want to thank all of you who have made this journey with me. Your thoughts, your prayers, and your concerns are greatly appreciated. I’m absolutely humbled by it. Please focus your thoughts and prayers on Vicki, Emily, and Zach as they have been my guiding light in this crazy storm. In addition, prayers would be appreciated for my dad, my sister, my sister-in-law, and my entire extended family.
Thank you.
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| A thoughtful gift from Vicki’s true friends. |
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September 26, 2019 – Melanoma has also left an imprint on Ken’s family. “Vicki has been my rock throughout this entire process,” says Ken. “She goes with me to every appointment. She also tackles all of the insurance forms and doctor’s bills so I can focus on getting better. Most importantly, she’s the ultimate glass-half-full person.”
The above quote is from an online article – that I co-wrote and edited – about my melanoma journey recently published by the Melanoma Research Alliance (CureMelanoma.org).
The article highlights an important aspect of battling cancer – support. I wouldn’t be here now without the love and support of my family and close friends. And I have no closer friend than my best friend, Vicki. She is truly my rock and the glue that hold our family together.
It’s also important to understand that not everyone has this loving support. That’s a horribly sad aspect of having a potentially fatal disease. It’s also, unfortunately, part of our cultural and, in some ways, part of human DNA. That’s why the work of organizations like the MRA and the American Cancer Society and so many others are so necessary in the fight against cancer. All cancers, not just melanoma.
Here’s the link to the MRA article:
https://www.curemelanoma.org/blog/article/living-life-with-melanoma
Over the past several months, I have shared – online – my melanoma journey story. The posts have appeared on Facebook, Twitter, this blog, Skincancer.net, and even LinkedIn. Each post has a slight variation to it. Some of these I have authored myself and some – like this one from the Melanoma Research Alliance (MRA) – were written by the organization. As I said in several of the lead-ins to the posts, I am humbled by the responses and the support I have received. I am truly fortunate.
Thanks, as always, for listening.
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June 22, 2019 – Six months ago I was lying in a hospital bed wondering, “What the hell happened?”
Honestly, I knew what had happened – I had a heart attack! Actually, I had several heart attacks – myocardial infarctions – over a twenty-four hour period. It was surreal. I wasn’t supposed to have heart problems. I have plenty of issues with Stage IV cancer, so no one – myself included – was focused on my heart.
My doctors monitored my cholesterol numbers – good, but not great – and my liver values (also pretty good and stable). My heart? That was something obese people or older people worried about. Not me.
So my melanoma journey diverged to become a health journey. I not only had metastatic melanoma and any recurring skin cancers to worry about; now, I had heart problems to keep me up at night.
Once again, I was fortunate. There was no damage to my heart from the 100% blockage of my right coronary artery (RCA). My new cardiologist put a stent in my RCA and, less than 24 hours later, I went home. My release from the hospital gave new meaning to I’ll Be Home for Christmas.
Note – Here’s the link to the original post about my heart attack: All I Want for Christmas Is…
Christmas and New Years came and went. By mid-January, I was slowly adjusting to my new daily pill regimen. The meds did their job and my cholesterol significantly decreased.
At the end of January, a thirty-six session cardio rehab stint began (see Heart Update at the bottom of Status Quo). Three times a week I spent an hour riding exercise bikes, walking on treadmills, and getting my heart rhythms monitored. Rehab grudgingly became a good routine. After almost three solid months of consistent exercise, I was feeling pretty good and looking okay. (Still need to lose another 5 – 10 pounds.)
Rehab ended in early May and my heart grew lonely (hence the title of this post). Not really. But I did miss the routine and the normalcy of rehab. The steady exercise was good for my heart and, surprisingly, my soul. During that period, I realized that I still have it in me to change. That’s the key – to want it. I have to continue to motivate myself to stay healthy.
The rest of May was hectic for us. A couple of trips along with time at the beach. My cardio routine was broken and it’s taken awhile to get it back. Sometimes good beer and good food will do that.
So, I’m now the owner of a lonely heart. It’s mine and it’s up to me to keep it beating. Like the lyrics of the original Yes song: You’ve got to want to succeed.
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| Miss Susan grows some beautiful irises. |
Melanoma Update – In early June I had my six-month CT scan and blood work. Everything was virtually the same as last November. No new tumors and my existing tumors remain stable and unchanged. Great news! My dermatologist took an additional margin on my back (Ouch!) which turned out to be benign. Also, great news! (See Wake-Up Call for details.)
Heart Update – Nothing new to report (other than what you read above). I’ve been having some issues with excessive heat and humidity. Who doesn’t? I see my cardiologist at the end of July. Hope he has some answers.
Thanks for stopping by.
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