Sharing Hope

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12/20/2013 10:02am
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Replies: 3

Hi everyone.  I have been an occasional poster and long time reader of this forum - since my husband's initial diagnosis nearly 6 years ago.  I know for me, it has always been encouraging to read the good news so today I would like to share some with you all.

I don't know if the patnet still works so here is a summation of my husband's journey.  He was diagnosed stage II in 2008.  All was fine and dandy until 2010 when mel reared its ugly head showing up in his lymph nodes which lead to a LND and horrible month of interferon.  Again, all fine and dandy until this past February when another enlarged node was found and scans revealed spots on lungs, liver, adrenal glands, etc.  BAM! - stage IV.  He is BRAF positive so decided to participate in a trial using Zelboraf for 6 weeks then Ipi then Zelboraf.

He did great on Z, and tolerated 3 doses of ipi at 10mg/kg when all of a sudden he had weakness and started losing mobility.  An MRI showed lepotmeningeal disease.  My husband was paralyzed from the waist down in the matter of a few days.  They thew the kitchen sink at him, radiation, Decadron, etc.  We all thought he was crashing.  In a few weeks he went from a wheelchair to a walker, and they put him back on Zelboraf. 

A neuro-onc said he might get 60% mobility back.  No one could believe how great he was doing.  They started questioning whether it was leptomeningeal disease or polyneuropathy from ipi.  He was walking again in to time though and even able to kick a leg over his motorcycle to ride that.  Still, no one can believe how well he is doing.  

So now for the really good news.  He has now been on Zelboraf for 6 months and had scans last week which showed NED!  In addition to that, his skin is showing depigmentation which indicates a late response to Ipi.  He is still very fatigued and has nausea & vomitting.  Life is still not loads of fun, but there is nothing like NED to brighten your holiday spirits!

This has been the most difficult year of our lives.  A roller coaster that so many of you are familiar with, but at the moment we are on the upswing and enjoying every minute we can!  

Press on, melanoma peeps.  I know the battle is tough, our family has weathered this storm and have the battle scars too.  I hope you are encouraged though to hear some good news.

Merry Christmas, Happy Holidays, and may God bless you.

Janet Lee - (12/20/2013 - 5:53pm)

Happy to hear of your "upswing." My husband (Stage IV January 2013) and I have been on this roller-coaster, so these upswings are certainly worth celebrating. Warm wishes to you and your husband during this holiday season, and here's to 2014!!!!

Janet Lee

WendyD. - (12/21/2013 - 5:53pm)

I'm glad for your husband's latest results, but being newly diagnosed myself I have some questions if you don't mind me asking. Your husband seemed like such a low risk of reoccurance and here he is going through all of this stuff. Did he have something in his orginal path report that would have indicated him more likely to have a reoccurance? I guess what I'm asking is what exactly did his biopsy results say the first time he was diagnosed? 

In God I Trust!

BrianP - (12/22/2013 - 8:02am)

Man that is one hell of a roller coaster ride!  Congrats to you all for weathering such a tough storm.  Hoping that is all behind you now and 2014 is a melanoma free year.  Thanks for sharing the great news.