Chapter 09 Chemo Chameleon

Chemo, Karma  

          Chemo, Karma

Chemo Chameleon

                                       I apologize for the length of time between posts.  A lot has happened that kind of dulled my desire to write, but I think it is back now and will be explained in future posts.

                                       Once I graduated from my radiation program and the 3 wise women completed their nomadic journey to Bern's and the Moffitt Center, I saw Dr. P again to discuss the treatment approach. The doctors' recommendations here in Gainesville were validated by the doctors at the Moffitt Center. I was still very tired and had an extremely low white count, verified each week by blood work.

The chemotherapy itself started a week later.  In the interim, a chemo port was installed in my chest.

                                               They inserted the port under my skin on the upper right side of my chest, and attached a tube into a major vein near my heart.  They then affixed it with surgical tape.   It should be noted that many people are very allergic to the tape used, and it can result in a pretty bad blistery rash.  The only evidence of its existence is a small bump at the port site, and you can see what looks like a tunnel from the port toward my heart running into the vein.  When I touch the middle of the port, it reminds me of one of those replaceable squeakers you get out of an eviscerated dog toy.  Of course, if the squeaker is ripped out, there's very little chance the toy can be salvaged.  

He's Dead, Jim

                                      About a week after the port has been inserted, then the chemo actually starts.  The chemo process itself can take on many forms.  The first form I'll refer to as "traditional chemo";  most people think all chemo is delivered in this form.  It involves sitting in an infusion room with a fancy recliner hooked up to a drug line that delivers the chemo cocktail via the port over a span of 4-6 hours.  It can be delivered via a regular IV, but if you choose to do that rather than a port your veins will eventually have so much damage and become unusable for future blood work and delivery of other drugs.                                                                                                                                                                                                       The first of the chemo cocktails was not the treatment of choice from my doctor; he had identified an oral medication in the immunotherapy universe that he thought my profile fit the criteria perfectly.  My insurance didn't agree; I think this was my indoctrination into the world of medicine versus the world of insurance.  I don't want to skip ahead on the time line of this blog, but I think to illustrate how asinine the whole system is, I will cite a few actual denials/approvals that occurred within the last 11 months.                                                                                                                                                             

                         First off, the case in point; my first encounter with the contest between good versus evil.  My oncologist recommended a clinical trial to which the Moffitt Center had concurred (see chapter 8 for detail). My insurance company balked at the cost and recommended the regular chemotherapy.  They said for me to be eligible for the study, my case had to demonstrate that the chemo had failed.  So essentially, they wanted me to go through a round of treatment that my Doctor said would not work.  He fought and fought, but the study required patients who had experienced a chemo failure.  The problem with that is there are hundreds of other immunotherapy and chemotherapy clinical trials that require a patient who is "chemo naive"   Essentially, by bowing to the ruling of my insurance company, I eliminated a lot of potential treatments (although my doctor was not in favor of any of those). It felt like I was tossing in half my hand in a poker game and trying to win with 3 cards against a bunch of 5 card hands.  In the end, I made the decision to go with the chemo route because it was the only way I would  get into the "right" treatment my doctor had identified.  It took somewhere around half a dozen treatments to determine that the chemo wasn't working.  (Told you so, told you so). 

                   After a patient has chemo through their port or IV line or even oral, there is usually an injection needed 24 hours later to stimulate bone growth.   The drug companies created the Neulasta injector that gets affixed to your arm or stomach, then a timer starts and 24 hours later the injector fires.  If you are on an oral med, every week they test your blood and if your white count is low (which it always is...) then they just give you an injection of Neupagen, which is the same drug the Neulasta injector delivers.  About 12 hours later, hold on to your hat, because you'll get hit with what I swear is the worst pain to date over your entire body.  It's the bone growth drug that causes the pain.  It's like your bones being on fire.  I was asleep on that morning and Connie was out doing yard work.  I screamed out in pain and stumbled to the back door.  She was right there and came running immediately, got me back in bed, shouting in pain and called the Cancer Center to see what could be done.  When she explained that I had gotten a Neulasta injection the previous day, they asked "did she take a Claritin and Aleve before the infusion?"  Duh.  Would have been good to know that prior to the procedure.  Well, we were obviously past the Claritin/Aleve stage of pain relief so I took the heaviest duty pain med that I had and slept the rest of the day.  Future Neupagen injections, either through the Neulasta injector or straight into my arm, I always took a Claritin/Aleve (or Advil).  I still had the bone pain but it was tolerable.  The doctor quit giving it to me because it was having little impact on my white count.  I now get an Xgeva injection once a month.  I can tell when it is time for that shot because it makes me feel good for 2 days, terrible for about 14 days, a little better but not "good" for 10 days, then really good for 3-4 days after which I get another injection and ride the ride again.

                Back to the timeline.  So it was somewhere around Thanksgiving 2016 that Dr. P decided to pull the plug on the chemotherapy and switch to another approach.  That approach involved an immunotherapy drug, taken twice daily.  It is an oral medication so no need to engage the port.  I still had to have it flushed every couple of weeks, and I received fluids through the port a few times.  So the port remained but was not used often.  It doesn't really bother me, except when one of my dogs jumps on it (ouch!)  Evidently they think they should be able to make me squeak.    

             Dr. P made the decision that the chemo needed to be changed based on PET and CT scans.  Across the building in radiology Dr. W was working on a strategy to take care of the METs in my brain that remained after the initial radiation.  I'll expand on that in a future post.

              

       Fast forward to July 2017.   You've already read about the success from my PET scan results in June.  I published that before I saw the MRI results of my brain which occurred on June 28  (MRI) and 29th (results).  My other doctor, in the radiology oncology specialty, came in to the room and said "it isn't good".  Essentially, the seizure was caused by a pretty big brain tumor, but there were literally 100's of others; some teeny, others  measurable.  The whole brain radiation resulted in progress in shrinking many of these, but the MRI in June showed some additional spots, significant growth in the number of tumors. The two doctors put their heads together and came up with a plan, a new and innovative immunotherapy treatment that they believed could break through to my brain.  It's clear the existing immuno drug I'm taking isn't able to do that (peek at the future of this blog right there).  So as of July 2017, my lungs look good, my organs look good, my bones look good although there are some bone loss issues that probably will prevent me from returning to some of my pre-cancer activities.  And I was just getting ready to go for my LPGA card, too!