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.
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| A thoughtful gift from Vicki’s true friends. |
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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.
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.
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September 3rd sunset: a reminder
to enjoy the beautiful things
life has to offer.
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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.
July 27, 2018 – Earlier this week I reached a personal milestone: it has been five (5) years since my stage IV cancer diagnosis. For me, it’s a bittersweet occasion this year. I’ve been fortunate to still be alive to experience wonderful times and happy memories, but at the same time, however, endure some very sad events and lasting heartache. Five years of the typical ups and downs of life.
Life goes on, even for someone living with stage IV cancer.
A Brief History
Note: Before I go any further, I want to make certain that anyone new to this blog or new to my world receives a brief history lesson. On July 24, 2013 my oncologist informed me that a PET scan revealed several tiny malignant tumors in my lungs (primarily in my right lung). He told me that without treatment I had 9 to 12 months to live. A week or so later, a biopsy confirmed that the tumors were metastatic melanoma. While treatable, stage IV melanoma is typically not curable.
Lucky to have cancer?
I realize how lucky I am – “lucky” being an odd word to use for someone with late-stage cancer. While I’m not looking for sympathy, I sometimes get frustrated with those around me – family, friends, neighbors, et al – who act as though everything is okay with me. I know I’ve ranted about this previously, but I DO have cancer and – as far as I know – it’s not going away anytime soon.
In fact, “going away” – as in I may be going away sometime soon – is the key reason this year’s diagnosis anniversary is so emotional.
Survival Story
For most cancer patients, survival rates are measured in five-year increments. Living five years after a melanoma diagnosis is a significant milestone. Survival rates at the 5-year mark for a patient with Stage IV melanoma are typically 15% to 20%. At 10 years, the rates drop to between 10% to 15% (based on 2008 data). Those statistics continue to improve as new targeted therapies have proven to be successful, but it’s still a very small ratio of hope.
Again, I’m fortunate to be in that ten to twenty percent group (so far), yet I can’t help wondering if and when my luck will run out.
Considering the inevitable
It’s hard, dreadfully hard to consider the inevitable. We will all face death at some point, but there are times – like this past week – when I have trouble believing that I will live another 5 to 10 years. At certain times, I can’t see myself getting older with Vicki or watching our children continue into the next phases of adulthood. We don’t talk much about it because it’s not only depressing, it’s painful to even consider.
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| One of my favorite pictures: June 2015 – Quebec City, Quebec Canada. |
One day at a time
We have a ways to go before our luck runs out, and, hopefully, by then, advances in cancer treatments – with a possibility of a cure – will become commonplace (and affordable). My goal is to continue to take it one day at a time and be there to enjoy – with my family and friends – every sunrise and sunset that I can.
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.
Tuesday, August 27, 2013
Week One
As of today, it has been one week since I started my medication, Gleevec. Also known as Imatinib, Gleevec is called a protein inhibitor. It was originally created to fight certain forms of leukemia (CML) and gastrointestinal tumors (GIST). The reason I take Gleevec is that through genetic testing, my doctors found that my tumors have a certain mutation, known as a c-KIT or KIT gene. According to some studies published in 2011, melanoma with the c-Kit mutation has responded well to drug therapy using Gleevec.
I will be on Gleevec for the next 60 days to see how my tumors respond to the drug. After 60 days, I will have another PET scan to see how well the drug is working. Depending on the results of the scan, I may stay on Gleevec, move to another drug or treatment, or begin a clinical trial.
So, for now, it’s just wait and see.
Oral Chemotherapy Drug
Gleevec is a pretty normal looking pill. It’s taken orally with water and on a full stomach. There are some possible side-effects such as nausea, body aches, fatigue, and – possibly – swelling. I’ve had a few of these symptoms, but nothing major. All of this sounds fairly standard, but, as with other aspects of this journey, there’s nothing “normal” or standard about a drug treatment.
Health Insurance Blues
I had my eyes opened when I began dealing with the insurance company about getting my prescription. First, Gleevec can only be dispensed from a pharmacy certified to handle cancer drugs. My prescription was actually overnighted from Indiana via UPS using dry ice cold packs.
Second, these types of drugs are not typically covered by the standard pharmacy benefit, so you have to meet your medical deductibles and/or co-pays before the insurance company covers anything.
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| Gleevec – hopefully a wonder pill.
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Third, this medicine is EXPENSIVE! When the woman on the other end of the phone told me the covered cost, I nearly passed out. When I asked what the retail price for a 30-day supply would be, and she told me that price, I actually said, “You’ve gotta be kidding?”
No Generic Options, Yet
The company that makes Gleevec, Novartis, owns the patent, which won’t expire until 2015. If some of this sounds familiar, it’s because Novartis got dinged a few years ago in the media for not lowering the price of Gleevec and some other cancer medicines. (According to some business websites, Novartis has made back the development cost of Gleevec several times over since it was approved in 2001.)
Anyway, as I said above, this has been an “eye opener.” Thanks for listening.
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