Tuesday, January 8, 2019

First follow-up appointment after CAPOX for ex-goblet cell adenocarcinoma of the appendix (GCC) and a RUN!!!

Yesterday was my first follow-up appointment with my oncologist after completing (in my own special way, full deets in prior posts) the 4 rounds of oxaliplatin and capecitibine in the past 3 months prescribed as adjuvant for my Stage II GCC.  Whew!  In so many ways!

It was pretty non-eventful as expected.  Here's my self report:  My feet still burn quite a lot.  Although I no longer feel like I am walking in over-sized clown shoes!  My fingers are still pretty numb at the tips but I can type, pick up pins and deal with other fine motor skills much better than previously.  The area of the IV infiltration to my right forearm is still red, weird and tender - but improving since B had the genius idea of putting a moderate strength steroid cream on it twice daily.  It is no longer waking me with pain when I accidentally smush it in my sleep!  I have been dealing with pretty significant joint pain, particularly to ankles, knees and hips since the very start of treatment and they are still hanging around with a vengeance!  The brown splotchy lesions I developed are gradually resolving.  Oddly, patches of vitiligo that I began to develop in my Opdivo trial are increasing.  So, weird.  BUT!  My abdominal pain is gone!!  I can eat pretty much what I want though I am taking that adventure slowly and still taking my pepcid.  Currently, salads, citrus fruit, and apples with peels are back on the menu! FYI (with a TMI warning!!) ~ After surviving 2 months of liquid poopage every 2 hours round the clock following surgery to remove my appendix and right 1/3 of my colon, succeeded by obstruction and a second surgery, and all sorts of crazy poopage problems while on CAPOX with at least 4-6 loose stools on the good days, things are much better!  Stooling is not "normal" with 2-3 loose stools per day combined with some urgency ~ when you gotta go - you gotta go!!!  Still, if you are facing this sort of colon removal, it is a manageable process!

Anyhow, the main point of my recheck was to determine a plan for long term follow-up.  B rechecked with the docs I consulted at Vanderbilt, not to mention all the papers and peeps knowledgeable about GCC.   We went over their points and her own perspective with my local oncologist.  In the end, we determined that I will have my first follow-up scan (a low dose CT without contrast of the chest and regular CT with and without contrast of the abdomen and pelvis) at the end of March.  Future scans are planned to be a CT without contrast of the chest combined with a CT of abd/pelvis WITH contrast only, in order to keep continued radiation exposure to a minimum.  The consensus is to have your first scans 6 months after diagnosis and then annually.  Additionally, I will be seeing the oncologist and having lab work, to include a "CEA" level, every 3 months.  What is "CEA"?  Carcinoembryonic antigen is a protein in your blood that is normally very high in a fetus, but is usually low in healthy adults. It can be elevated in those adults should there be a growing thyroid, lung, breast, ovarian, pancreatic, stomach, bladder, colon, or rectal cancer.  As you see from the list, GCC is NOT included.  We are rolling with this test due to its usefulness in colon cancer which may, or may not, match up with my cancer. In fact, when it was drawn in the hospital just after having said cancer, my levels were normal.  But, we'll try it.  B is also researching other tests we may add to the mix.  How long will this go on?  The end point was not conclusively determined, but will likely be somewhere between 3-5 years.  All peeps interviewed agreed that we are at the point in my melanoma ta-dah (16 years overall, 9 years Stage IV and over 8 NED) that I am no longer in need of scans in that department.  Obviously, additional studies would be ordered should I develop untoward symptoms or demonstrate adverse numbers in my lab values.

In the spirit of upward and onward, combined with a break in the cold rainy weather that has been a bit perpetual lately,  B and I have done some "structural" work on our garden (taking out some saplings and overhanging tree branches, pruning overgrown roses, crepe myrtles, fruit trees, and rhodies) as well as taking down some netting/fencing that prevented the intrusion of rabbits and deer not at all!  I have continued to increase my indoor work-outs moving from 10 minutes to 15 on the elliptical as well as upping the 'level' from 3 to 4!  I am doing more sit-ups, push-ups, planks and reps with my weights.  But, the coup de grace to call an end to my incarceration is this:  I completed my first run since August!  It was more of a slog.  Only a mile.  But, I did it!!! 

Pre run!
On my return!!!  None the worse for wear.  With photos from my ever watchful Medical Meerkat Photog!
It is not always easy, but in the words of wise dear Jeanne, "Life is good!" - love, les


  1. Les, you are really a tough warrior & I love your blog and melanoma.org forum entries. And yes, "Life is good!" Cheers, Chris0815

  2. Awwe! Thanks, Chris! Wishing you a great 2019!