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.

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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. 

Week One

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.

Gleevec – hopefully a wonder pill.

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.

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.