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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First of all – THANKS!
I cannot begin to express my gratitude to everyone who has sent me emails, Facebook posts, Tweets, and even a couple of old fashioned cards over the past two weeks. It’s been a bit overwhelming but reassuring. So, this post is just a simple one to say “thanks.” I truly do appreciate your love and support.
Second, please continue to spread the word among your friends, our friends, former coworkers, and others. I am a firm believer in the power of community – whether it’s positive thinking, prayers, or good actions – and as I said in my first post, this part of my journey may be a catalyst for opportunities that are bigger than any of us could manage on our own.
Finally, I realize we all have problems and issues of varying degrees, so I want you to know that I’m thinking about each and every one of you, along with your families and loved ones. You gotta be able to give as much as you receive.
That’s the true power of community.
Greetings…if you’ve made it this far then you have found my blog. Let me give you a quick introduction to the post page and an explanation for the blog’s name.
First, the title: In Difficulty Lies Opportunity
The title comes from an Albert Einstein quote – “Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty lies opportunity.” I believe that last line of Einstein’s quote hit home with me as I continue to deal with the reality of my most recent cancer diagnosis.
My Journey with Melanoma
You’ll also notice that my sub-title is “My Journey with Melanoma…”
There are two things to note here: First, I don’t want to use “battle” or “fight” which have both been used too many times to describe dealing with cancer. Not that I am not a fighter. But my current situation is part of a life-long journey that we all take. Using the word “journey” is much more in-line with my philosophy of using my difficulty as an opportunity. What type of opportunity? Well, that’s what makes life a journey.
Metastatic Melanoma
Second, it’s also important to note that I have metastatic melanoma. Unlike other forms of cancer, melanoma – once it finds it way inside your body – is not curable. Treatable? Definitely. Livable or sustainable? Certainly. But – technically – it is not curable. Yes, it could be removed. But the reality is that the cancer may return to another area of the body.
That’s a lot to process when you’re sitting in an examination room thinking you were going to get another “good report” from your oncologist, like I was doing about a month ago. Needless to say, this has been the ultimate emotional “roller coaster” for my family and me. As I continue to add posts – the plan is to do so on a daily or weekly basis – I will include more of the technical details to help everyone understand my situation.
My Blog
Finally, I continue to tweak this blog layout and “appearance” to make it more appealing. If something doesn’t look right to you or you have trouble accessing the blog, just send me an email. Also, I will include some prior notes from my own journal to this blog (so don’t get confused by the dates).
Thanks for your love and your support.
