A Cold Winter

Dear Family and Friends,

It has been a long December and January.  Very cold weather has been the order of the day so far this winter but there is hope for a warm up come February.
I must thank Helen for writing the last post to let you all know what is going on.  She did this on top of everything else she does including taking care of her worn out husband - what a wonderful woman.

Fifteen days of brain radiation in December (and remember, December only has 30 days) has left me very fatigued so that any activity leaves me ready for a nap.

My Favorite Activity After Radiation

My sister Maureen was due to have surgery for colo-rectal cancer up in Kinderhook, NY where a number of the Rielly clan reside.  Our good friends Tom and Martha Sternal were planing a trip to visit Tom's son who lives in the next town over.  They were kind enough to offer us a lift which made for a much more relaxing trip since Tom and Martha did the driving.  Thanks so much to both of them.

a few of the Rielly sibs - Chris, Jack, Peggy and Rick

handsome as ever

Jack's sister Maureen walking for the first time after her surgery

Breakfast with the Rielly's in Valatie, NY 

 road trip with Todd, NC friends Tom and Martha to New York 

Exploring along the way

It was a great opportunity to see the family.  Paige, Sean and the kids were still in Connecticut at the time and came over to say hello and offer support for Maureen.  She is home now and although surgery like this is no picnic, she seems to be well on her way to recovery.

It was a long trip back hope and we were very glad to make it back to Todd in time to celebrate Australia day which was hosted by Phil and Linda and had an assortment of Todd area friends from Down Under.  It was a great evening which included a quiz about that great continent - I don't think I got one answer correct but did learn a lot and had many a laugh along the way.  Australia Day party in a little Appalachian town? - It's got to be Todd.

Cheers Mate

Helen and I had been trying to find a time to visit family and friends in Northern Kentucky and Southern Ohio.  We found and opportunity and so we headed west across the blue ridge to the blue grass.  Helen has a large family (4 brothers and 4 sisters).  They are a wonderful bunch that I feel are my family too.  When we first started dating I had to put a post it on the fridge to keep track of who is who.  We had planned to stay with sister Mary Ann and her husband Tim.  Not only were we very welcome there, most of the rest of gang all stopped by (some from great distances) which made for a very festive gathering.  A visit to see Bridget and Stephanie (Helen's close friends) and their family was the icing on the cake.

With our Kentucky hosts Mary Ann and Tim

Helen was so excited to be with her family that only one picture got snapped but I promise more Barnes photos down the road.  They are a wonderful, loving, supportive family that I am very fortunate to be one of.

Happy Birthday Lainey 

Somewhere in there our good friend Lainey Edminson managed to put another notch in here belt.  Here significant other and our good friend Jim Lewis got together with Phil and Linda and put together a very nice celebration - cake and drinks, can't beat it.

So that is the social side of what has been going on since Christmas - now for the cancer side of things.  It is hard to know where you stand with the disease without taking scans that can look inside you and spot those tumors.  I was anxious to get a status as it had been a while since I had a set of scans.  After the two different types of brain radiation, Dr. Hanks prescribed a type of chemo that targets the B-raf mutation that some Melanoma tumors have - mine included.  The drug is initially very effective but the results are not durable as the cancer mutates again to protect itself from the drug.  The reason Dr. Hanks prescribed this treatment is to buy some time while the brain lesions resolve.  My main hope for a durable result is one of the new immune treatments especially PD-1.  Unfortunately this treatment is only available in clinical trial and most of those trials disqualify patients with brain lesions.  However, some trials will accept patients if their brain lesions are inactive for 30 days or more without treatment.  So the timing was to follow the B-raf treatment until the radiation had enough time to resolve so that it could be imaged, show stability and then attempt to be accepted into a PD-1 clinical trail.

That's where things stood as Helen and I went down to Duke last Friday for a series of scans and a meeting with Dr. Hanks.  The results were not exactly what we hoped for.  Some tumors were gone, some stable and others new.  The bad news was that there is a new tumor in the brain.  To address this we need to go back to Durham to see Dr. Patel, the radio oncologist tomorrow mask in hand (remember the mask?  good thing I hung on to it).  They will map what is left of my brain and, the following Friday, I will have a one shot radio surgery treatment on the new found tumor.  There could be side effects from this as well as the drugs including "personality changes" so if you run into me you may be meeting Dr. Jekyll or Mr. Hyde :-)

All of this will put the schedule back two months or more.  During that time Dr. Hanks will prescribe another B-raf drug that has just been approved by the FDA for use in conjunction with the one I am taking now.  Think of a bigger finger in the dyke to try and buy a little more time.  The time issue is even more in play now as many of the PD-1 trials are closed or about to close.  I understand that the drug company is not planing on opening new trials as they intend to seek FDA approval.  How long that will take is unknown.

So you can see that the situation with my disease is a complex on that is influenced by many different factors most of which are not in my control.  On the bright side, I spoke to my nephew Jamie's wonderful wife Chris whose education and background is in immunology.  She has many friends in the National Institute of Health and is aware of cases much farther down the road than me that were turned completely around by these new systemic immunological treatments.  So, like you my family, friends and supporters I remain optimistic.  Your positive outlook, kind words and prayers have meant the world to me and I promise to do my best to make your efforts a success with a recovery from this disease.

Love to All,
Jack