Science, Real Science

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.

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. 

Giving Back

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.

A long day.

Infusion Blues

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.

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Writer’s Note – I’ll continue to update my blog on a periodic basis. No set schedule. So, I want to thank everyone who continues to stop by and check out my blog. Please leave a comment or message; I’d love to hear from you. 

Another Twist, Another Turn

October 1, 2020 – Today I started a new treatment regimen: immunotherapy. For those of you following my blog, a lot has happened since my last post (The Verdict Is In). Needless to say, we’ve taken a new path in my melanoma journey; hence, the title of this post.

A Quick Recap

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).

A New Twist

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.

Cabin in the Woods

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.

Immunotherapy Explained

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. 

A new turn in my journey.

What About Your Lungs?

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, Again

Thanks, once again, for your thoughts and support. We truly appreciate it. As my treatment journey continues, there will likely be more frequent updates.

Everyone should have a view like this.

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Writer’s Note – I’ll continue to update my blog on a periodic basis. No set schedule. So, I want to thank everyone who continues to stop by and check out my blog. Please leave a comment or message; I’d love to hear from you. 

The Verdict Is In

September 12, 2020 – Bottom-line: melanoma has spread to my right adrenal gland. 

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.

Now, some good news

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. 

More details to come

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.

Finally, thanks!

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.

A thoughtful gift from Vicki’s true friends.

Note:  If you want to leave a comment, just choose “Anonymous” from the Profile Selection drop down bar right below the Comment box. (It’s the very last choice.) Sorry for any confusion.

Also, please make sure you leave your name or sign-in somewhere in your comment. Thanks.

Writer’s Note – I’ll continue to update my blog on a periodic basis. No set schedule. So, I want to thank everyone who continues to stop by and check out my blog. Please leave a comment or message; I’d love to hear from you. 

The Waiting Is the Hardest Part

September 5, 2020 – Much of our August was spent at the West Cancer Center: blood tests, CT scans, an ultrasound, another CT scan, and, finally, a wonderful needle biopsy. Throw in a couple visits with my oncologist, further lab tests, along with a PET scan, and August was a month I’d like to do without.

Why all the visits? You may recall from my last health update on July 6th (Doctor, Doctor…) that – since early June – my doctors were monitoring a blood mass in and around my right adrenal gland. 

September 3rd sunset: a reminder
to enjoy the beautiful things
life has to offer.

Here’s an excerpt:

Now For Something Completely Different

There was, however, something completely unexpected on the scan results. A fairly large mass – about 2 1/2 inches – on or around my right adrenal gland. The adrenal gland sits on top of each kidney. The radiology oncologist called it a heterogeneous mainly low density mass. Basically, it looks like I had some internal bleeding either in or around my adrenal gland.

Testing, testing…1, 2, 3…testing…

On August 7th I had an ultrasound to determine if there was any tissue with the blood mass surrounding my adrenal gland. The ultrasound did show tiny tissue fragments, so I immediately underwent a needle biopsy utilizing CT scan technology.

A needle biopsy is exactly what it sounds like. An area of skin is deadened and a (somewhat) long needle inserted into your body at the spot to be biopsied. Unfortunately, you remain awake during the entire procedure. It’s painful and weird – the only way to describe it.

Note: The biopsied tissue samples were sent off for detailed genetic evaluation (biomarkers).

A little over a week later, on August 18, 2020, I had a PET scan. Doctors use a PET scan to determine if any cancer – metastatic melanoma, in my case – has spread to other parts of your body, including your lymph nodes.

PET scans utilize a radioactive tracer that is injected into your bloodstream. To be effective, your body must be completely at rest for an hour or more.

Glowing in the Dark

Here’s a brief description of what a PET scan is like:

I shuffled into a cold room with a hard terrazzo floor. In the room’s middle sits a large scanning machine. Plastic. Metal. Intimidating. At this point, I was exhausted. Ready to go home. I hadn’t eaten in over 8 hours, and I’d had no caffeine today. None! It was almost three in the afternoon.

Plus, I had just spent the past hour sitting in a small dark room doing nothing. Nothing. Just sitting, trying to relax, while radioactive isotopes coursed through my body…I think I slept for 15 or 20 minutes while in that little room.

After being strapped down to the hard plastic “bed” of the scanner, I was inserted into the metal and plastic donut hole several times. Many people refer to CT and PET scanners as donut fillers. Another 25 minutes went by before we finished.

Now the hard part

The waiting game began a few weeks ago and will be over soon. At that point, we’ll know the biomarker testing results and the results of my PET scan. Then we’ll know the next direction in my journey.

Thanks, as always, for listening.

Note:  If you want to leave a comment, just choose “Anonymous” from the Profile Selection drop down bar right below the Comment box. (It’s the very last choice.) Sorry for any confusion.


Also, please make sure you leave your name or sign-in somewhere in your comment. Thanks.

Writer’s Note – I’ll continue to update my blog on a periodic basis. No set schedule. So, I want to thank everyone who continues to stop by and check out my blog. Please leave a comment or message; I’d love to hear from you. 

In the Eye of the Storm

August 28, 2020 – Earlier today, Facebook alerted me to a memory from 2017. I’d almost forgotten about the post until today’s notice. What I haven’t forgotten, unfortunately, was the crappy comment that came from a former high school classmate.

Note: Yes, on Facebook yesterday, I mentioned the fluke that this 2017 memory popped up right after Hurricane Laura came ashore in Louisiana. 

2017 – A Little Background

On August 28, 2017, Hurricane Harvey, after slamming into the Texas coast, drenched the Houston area for several days, causing major flooding. Vicki and I have close friends who live in that area. We were on vacation in Snowmass, Colorado. Obviously concerned about friends and 

After Hurricane Harvey hit Houston, Texas.

extended family, I posted our thoughts on my Facebook feed.

I received the typical Facebook feedback (see below) – Likes, Loves, and a couple of shares.

One person, however, had to rain on my goodwill. I realize it’s a minor thing – especially with everything going on right now in our world – yet, three years later, the comment angers me.

And saddens me.

People, Nowadays

Let’s start with today’s internet, a digital Pandora’s Box that has destroyed civility as we know it. Or, what was known as being polite, courteous, and considerate.
Nowadays, almost no one thinks before typing a comment or responding to an online post. Who cares about being snarky? Hateful? Insensitive?
It’s my opinion and I’m going to express it, regardless of the ramifications. Or, the hurt I cause.
Never did hear back.

The Comment

At first glance, the commenter appears to appreciate my concern and that I expressed my concern. It’s the final sentence (underlined in the screen shot) that, frankly, still pisses me off.
This is more than a notion… 
There’s a host of emotions – along with my reaction – in that part of the comment. I’ve read it countless times. In fact, I waited a day or two before responding (see below). Never heard back, by the way.
When reading the entire comment, it becomes apparent that the commenter does not believe simply reflecting upon the situation or showing concern for those impacted by a disaster is up-to-snuff until one prays about it, or, more accurately, states that one will pray for others. You know, “Thoughts and Prayers…”
In today’s environment, people say “Thoughts and Prayers” much like “How are you?” is used as a greeting. It’s automatic. Almost robotic. There’s no substance behind the phrase. Just something to say, or post, when bad things happen. 
What angers me is the comment’s tone. I’m being admonished for not including the word “Pray” in my post. As if that’s an oversight that somehow lessens my concern for others. My intentions judged based on someone else’s standards or ideals.
I simply wanted to express my concern for others. Apparently, that wasn’t good enough.

My Response

Below is my (edited) response, which, at that time, I felt was measured and thoughtful. I never heard back. Now, I don’t really care. I’m venting. Perhaps that’s the first step towards finding peace (for me).

One of the definitions of “thinking” is that of thoughtful reflection. In fact, another definition states that “thinking” (as a verb) is to employ one’s mind rationally and objectively in evaluating or dealing with a given situation. So, I’ll continue “thinking” about those of you in Texas and Florida who are dealing with the aftermath of hurricanes and floods. 

I will also continue to hope that everyone’s situation improves and that they do not face long-term problems. I will use my words on MY Facebook feed. You are free to use your words on yours.

Thanks, as always, for listening.

Note:  If you want to leave a comment, just choose “Anonymous” from the Profile Selection drop down bar right below the Comment box. (It’s the very last choice.) Sorry for any confusion.

Also, please make sure you leave your name or sign-in somewhere in your comment. Thanks.

Writer’s Note – I’ll continue to update my blog on a periodic basis. No set schedule. So, I want to thank everyone who continues to stop by and check out my blog. Please leave a comment or message; I’d love to hear from you.