Ron Willey

First post: Oct 28, 2016 Latest post: Dec 10, 2023
In 2008 I found a changing mole on my left thigh that ended up being melanoma.  Unfortunately, it had spread to one lymph node, so began my yearlong treatment with Interferon.  The Interferon worked well and has kept the melanoma in check without any problems for the last 8 years. 

Towards the end of August this year (2016), I was backpacking up at altitude and had a brief episode of blurry vision.  It lasted only 20 minutes and then completely resolved.   I attributed it to the altitude and dehydration not thinking much of it. 

~10 days later I had just gotten back from the gym and was sitting at my desk when I started to have blurry vision again.  Similar to the last episode, it lasted less than 30 minutes.   With my history of melanoma, friends and family encouraged me to not blow it off, but to go see my PCP. 

My PCP worked up my heart (I had a hole in my heart as a child which was repaired and wanted to ensure that wasn’t the problem) The results were normal, and an order for a MRI of my brain was issued. 

The morning of September 28th I went and had the brain MRI.  Within 45 minutes of this test, my PCP was on the phone with me, letting me know the terrible news: 
The MRI showed numerous, very small, lesions throughout my brain that were very concerning for metastatic (spreading) melanoma.  

Needless to say Tricia and I were caught completely off guard, scared to death and very upset.  We had already planned a getaway trip to Rocky Point for the weekend, so we went ahead and went, spending a few days starting to process this news, getting strength from each other and crying  (and drinking) a lot.  

Our return was followed by many visits to oncologists, radiology oncologists, surgeons, biopsies, and second and third opinions, telling our close friends and family the news and getting much support for this upcoming “journey”.  

My diagnosis is Stage IV metastatic melanoma with numerous very small brain metastasis and 2 melanoma positive regional lymph nodes (back in my left groin).

Due to the small size and  number of visible brain lesions, all 3 oncologists that we’ve met with have recommended WBRT (whole brain radiotherapy). This will consist of 14 whole brain radiation treatments that will be spread over 3 weeks.  

The radiation itself is not painful and they expect me to be a little tired and I will soon join the ranks of the hairless.  The problem with WBRT is the possibility of cognitive deficits, most often, short term memory loss.  These problems don’t happen with everyone, and we are keeping our fingers crossed that I am one of the lucky ones that are unaffected.  To help decrease the cognitive problems, my radiology oncologist has started me on a medication used in Alzheimer’s patients called Memantine.  I’ll be on this for 4-6 months.  

Two of my brain lesions have some swelling, or edema, around them.  This swelling is actually what they think is causing my episodes of blurry vision.  I have been on Dexamethasone (a potent steroid and anti-inflammatory) medication for the last few weeks to help decrease this swelling.  

After starting the WBRT, the next step in my treatment will be to add “immune therapy”.  The exact treatment that will be used is still in limbo, awaiting genetic marker testing.  As soon as these results come back, the oncologist will be able to best determine what treatment is right for me to start with.  

The immune therapy works best when there are little to no steroids on board, so the first goal is to wean me down to as low dose as possible prior to starting the treatments next week.  I will either start two pills that are specific to a mutation call BRAF (these are the results that we are waiting for).  The targeted medication towards BRAF, if I’m able to go down this route, is well tolerated and has a good response rate (up to 80%), However, since it typically only holds the cancer at bay for 10-12 months, it would only be used as a “bridge therapy” to get me started.  This would allow me some time to start fighting the melanoma that they already see, while working on getting off of the steroid in hopes of starting immune therapy a few months down the road. 

If I am not BRAF positive, then next week I will start IV infusions of two medications (Opdivo and Yervoy).  These two meds will be given together every 3 weeks for 4 treatments.  They are immune modulators and tend to have more serious side effects as the medicine can cause the body to fight itself causing severe inflammation.  The two main areas of concern are the gut and the lungs.  They tell me these side effects usually aren’t seen until after the 2nd dose of the meds, AND that 30-50% of patients do just fine.  Again,we are keeping our fingers crossed and hoping that I am one of these 30-50% that do great.  The good thing about the immune therapy is that if I tolerate it well, and if the melanoma responds to the medicine and dies, that it lasts for years.  

At this time, there is no plan for any surgery either in my brain or in the two lymph nodes in my groin.  At first this didn’t make sense to me. My thoughts were there is cancer there, get it out!  The docs have explained that the cancer is in my lymph system and obviously therefore, in my blood.  That is how I have the lesions in my brain.  So, we need to allow time to see how I respond to the immune therapy and WBRT, ensuring there are no further lesions that pop up elsewhere.  Then we will re-evaluate to see if it makes sense to remove the 2 affected lymph nodes.  

Fortunately, over the last 8 years there has been much research done and  there are many new promising treatments for melanoma.  We have sat down with several of Phoenix’s top cancer treatment physicians and have decided to continue my treatment with MD Anderson’s Cancer Center in Gilbert.   

We also realize that medicine is one part of the treatment.  I will be working on keeping a healthy balance to my life, staying physically fit, getting my mind in a good place—I might even start meditation—laughing much and being with friends and family as much as I can.  

With your thoughts, prayers, hugs, jokes, laughter and a great medical team…..we believe that we can and will BEAT THIS MELANOMA ONCE AGAIN!!

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