Marching into Spring

Hey Everybody,
Sorry for the delay in this post but Helen and I have been busy and not much has been going on.  Well actually there has been a lot going on but not necessarily involving my disease.

Where would I be without my angel Helen?

My hard working wife,  on top of everything else, has be studying to get her real estate license and after much hard work she passed the course as well as the state exam so she is now a certified real estate agent.  If you know anyone looking to buy or sell property up here in the High Country be sure to get in touch with Helen.

You may remember we recently traveled to upstate New York to visit my sister Maureen who was dealing with colon cancer.  She had successful surgery for that but suffered a setback when they found a tumor in her lung.  That tumor was removed last week and the biopsy revealed that it is colon cancer as well.  She will meet with her doctors soon to chart a path forward.  There are seven kids in the Rielly family.  Maureen is the oldest daughter and I am the oldest son so it is ironic that both of us are dealing with cancer.  A prayer for her would be most appreciated.

As if that wasn't enough family health woes, Helen's sister Teresa recently had brain surgery to remove an aneurysm.  The surgery, while scary, went well and the little life threatening bugger was pulled out.  Helen will be visiting her and husband Barry soon while I take a trip down to Texas to see Sarah and  her family - a trip made possible by a ticket donated from a very generous friend.

Dr. Patel planning another brain fry.

Beautiful Paige and sweet Grayson came to share their support

Since this is a blog about what's eating Jack here is the latest info about my adventures with melanoma.  As I mentioned in my last post, I went back to Duke for radio surgery on the stubborn tumor in my brain.  The "whole brain" treatment didn't knock it out so it got the full burn this time.   I'll go back in a month or two for imaging to confirm this.

You can't see it but that is Duke getting beat in the NCAA tournament.
I was at the Cancer Center on campus while it was happening. 

Because of all this nonsense with the brain tumors I have been on steroids for a long time.  This has caused my muscles to weaken severely making it difficult to walk or do any real physical activity.  Well the good news is that I was finally able to, after winding my dose down for a few weeks, stop this medication all together.  I am really happy about this as steroids are really nasty drugs.  In addition I was able to schedule an evaluation for physical therapy.  Hopefully I will be able to start a PT program which, on top of ending the steroids, will have me walking in a somewhat normal manner one of these days.

As I mentioned before, I am now taking two different drugs designed to target the B-raf mutation in my tumors.    These drugs have a high incidence of effectiveness but, unfortunately, the results are not durable which means that the cancer will come back.  The strategy was to use these treatments to buy time until a clinical trial for PD-1 could be found.

Well there is a lot of news here as the pharmaceutical company that developed PD-1 is about to seek FDA approval for the treatment - this is why they ended most if the PD-1 trials for melanoma.  Since it may take a fair amount of time for the approval process to run its course the company is putting in place an option for people like me that my not have the time to wait for the FDA to approve the treatment.  This program will allow patients with stage four melanoma to get the treatment outside of clinical trials.  Implementation of the program will start at hospitals that have previously conducted clinical trials with PD-1.  Duke falls into this category.  There are some criteria that need to be met but they are not nearly as strenuous as those for a clinical trial.

It has always been my goal to be treated with PD-1 by Dr. Hanks at Duke.  With the changes noted above that goal went from "not a chance" to "we will start in about five weeks".   It just goes to show you that things can change quickly especially with the love, support and prayers of so many people.  I have been and remain a happy person who counts and is amazed by all the blessings that shower down on me.  Speaking of showers, I will leave you with a couple of weather pictures from Todd in the crazy month of March.

In like a Lion.

 

Out like a Lamb