Tuesday, April 2, 2019

Brighter is not always better

The past few months have been very busy with work, traveling, and getting to see family and friends. This February, we celebrated our 25th reunion from Florida College.  That does not seem possible as we are still SO YOUNG (at least at heart).  It was wonderful to see those that could make it.  As so often happens during lecture week, though, I caught a pretty nasty virus.  It made me have to stop my chemo & delay it for a week or so.  

Over spring break, I had an amazing trip to the Galapagos.  It was fascinating to see the animals that are only found there and enjoy walking on and snorkeling around the islands.   If you have any desire to do this trip, I strongly encourage you to make it happen.  It is definitely worth it!  I say that even after I came back with the Ecuadorian bug to beat all bugs.   I was horribly sick to my stomach for over a week, and chemo again had to be stopped and delayed.  

These delays had me pretty nervous because my February tumor markers had risen a little bit.   A Petscan & my bloodwork were done this past Friday, and I met with my oncologist to get the results today.   The good news is that there are no new tumors.  The bad news is that the 3 that are there (1 in liver & 2 lymph nodes) each got bigger & are shining brighter.    The radiation that you are injected with for the petscan makes cancer glow & the brighter it glows, the more active the cancer is being.   My CA27-29 tumor markers raised another 10 points proving that they are still a good indicator of what is going on inside.

We are in a bit of a conundrum.  My oncologist is looking into whether there are any clinical trials that  would be a good fit.   There also is concern that the difference may be the breaks. So, barring a great clinical trial option, we are going to give Xeloda another month.  Currently, I've been on 2500 mg a day (1 week on / 1 wk off).  We are going to try to raise that a bit by alternating 2500 & 3000 mg every other day to see if that would work.  After 2 more cycles, we will run the tumor markers again. If the revised dosage can keep me stable or have regression, we will try to stay on it for as long as we can.   When we need to change, either next month or later,  it will be to a more traditional IV chemo as what I'm on currently is the only true pill chemo option.

Cancer is a tricky beast and for lack of a better description, learns how to work around the medicines that you throw at it.  Eventually, each treatment will stop working....you just never know when that point will be. Since mine became active again, I have been going through basically a treatment every 10 months to a year.  I did express my concern about this because I have a relatively small amount of cancer compared to many metastatic patients.   Some oncologists wait to change medications until the patient has side effects.....I didn't have any liver side effects even when my liver was covered in tumors.  My oncologist believes in being a bit more aggressive and changing when it is obvious that the drug isn't able to at a minimum keep things stable.   Her goal is to keep as small of a tumor load as possible & possibly get that treatment that will fight it all the way back for a little while or at least give best quality of life for the longest possible time.  This strategy fits with my personality and how I want to address things, but it can be a bit scary to watch the available treatments get checked off the list.      There are still several options available, don't get me wrong, but watching the list get shorter is still difficult.  

I am currently in my off week, but will start the slightly higher schedule on Monday.  I would appreciate your good thoughts & prayers that the higher dose will be effective if possible, but if it is not the right drug/amount for this time, that we will know and be able to get me to a medicine that will be more effective.    I am so very thankful to have the oncologist that I do and to have so many people who are praying & thinking of me.   Even in news that could have been better, I know that I am blessed.