Saturday, July 2, 2011

Scan Results

Well, we got the results yesterday of Thursdays CT and MRIs and we got neither a winning lottery ticket nor devastating news - something more in the middle and along the lines of our original treatment plan.  The biochemo did not shrink my existing tumors but they also did not grow.  The tumor in my hip looks stable enough that Dr. Patel approved a stationary bike for me, which is pretty exciting.  Unfortunately, we did find two new tumors near my kidney.  Sometimes they call biochemo a "springboard treatment" specifically because it halts the progress of your existing cancer while you have to wait for other treatment options.  For us, we've waited five weeks for our other treatment option – the TIL study - and the t-cells they extracted from me in May have grown successfully into the millions.  This means that I can likely enter the TIL clinical trial at the end of July.  More details on what's involved in that later.
     So, what does this news mean?  Its some cold comfort that this was the plan from day one.  The TIL study was my number one goal and the reason we went to MD Anderson, but we did not get the sudden success from the biochemo that we held as an outside hope.  Our recent optimism was born of my surprisingly strong recovery from the biochemo.  We were made to expect to limp through the time in between treatments, to expect blood transfusions and emergency room visits, but my recovery was rapid and complete.  Now, two weeks after my second round - which was supposed to be the worst - I feel the best I have since entering treatment.  I even hit the hotel gym before seeing Dr. Patel yesterday.  I do not think my stamina was working in the same direction as the biochemo treatment.  Chemo works by destroying you - hoping that the healthy part of you is destroyed a little less than the cancer part of you.  The TIL treatment, however, relies on your body’s ability to fight, to recover and to attack that which attacks it.  This treatment seems to play into my strengths.
    Switching to the TIL treatment has many other positives.  In addition to having a complete attack plan, it means that I'll be spending a wonderful bonus time at home with the family while I'm feeling good.  It also means I may return to work after recovering from the second IL2 treatment and that I can resume a relatively normal life until otherwise notified.  This is all good news but delivered with a bit of a setback.  Lance said that cancer taught him to be comfortable with ambiguity, now I know what he's talking about.
     So this week we're going to take the kids to Disney World and enjoy the downtime before the big attack in a couple of weeks.  I'll continue regaining my stamina and getting stronger and healthier each and every day.  Meanwhile, cancer can sit there and wait, nervously anticipating the billions of specially trained tumor infiltrating lymphocytes that are coming its way soon.  Think about how many zeros are in a billion, cancer, and I'll be enjoying the Magic Kingdom.


  1. Wow - enjoy the down time and have a great time at Disney. Isn't technology amazing? TIL sounds pretty cool - and we are sure you have what it takes for it to work. Cancer look out!

    And did you see all the crashes today in Stage 1? I wouldn't want to be that spectator! Les Essarts tomorrow!

  2. Mein lieber Sohn... I dont know what to say. We're disappointed, we were so hoping things would be ok. But there is a plan "B" and we are thankful for it. This WILL work and you keep getting stronger and have this positive outlook. We are right behind you. It will be nice to see you all.
    Lots of love and hugs.

  3. William, Great blog. I was diagnosed with Melanoma in May 2010. I took Interferon for a few months then discovered melanoma on my rib recently. I had to stop treatment since it was obvious Interferon was not working. Since then I've had one dose of Yervoy, found tumors in my right thigh, right glute, left hip and a couple of lesions on my brain. I'm curious about the TIL study. Is that one where you have to be on IL-2 to use or is that a different treatment? It's been difficult, as you know, but I'm doing my best to kick this thing and get back to normal. Thanks for writing this blog!

    Jim Orr

  4. Hi William, I absolutely love that you are writing this blog and I am so inspired by it. I was diagnosed with melanoma back in 2006 (I was 29 years old then) and have also been through many surgeries and treatments. It is one hell of a fight to go through but reading your updates truly helps keep me positive! I have been on the BRAF study since November 2010 and have had amazing results so far. But if it happens to stop working, I'm ready to go head on with other treatments!

    I really hope you and your family enjoyed your time in Orlando (I live 20 mins from the parks :-) and I look forward to seeing how you are doing in the future.


    Tara Smith