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.

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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.

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