Monday, February 13, 2012

Time for changes... lots of changes

The new year is supposed to be a time of change, but my first big change of the year isn't something I expected or hoped for.  Sutent has failed me, according to my most recent scans.  I have a new lesion in my liver, about 1.1cm, joining a smaller one that has remained.  (I had four of them in 2010)  According to my chest CT, "multiple (>20) new and enlarging predominately right-sided pulmonary nodules.  For example, previous identified 2-mm nodule in the anterior segment of the right upper lobe now measures 4mm.  Persistent poorly marginated ground-glass nodule in the posterior segment of the right lower lobe. Few scattered granulomas."  As Dr. Rini noted, the report sounded worse than the actual view when he looked at the CT scans himself.  I had multiple tiny dots in my lungs already, which in the previous scan were noted as "improving bilateral pulmonary nodules, representing favorable response to therapy."  So, the news is not as bad as it could be, and I remain oblivious to these little things living inside me, as they cause me no discomfort.  On the other hand, it was a blow to get the news that it was time to go to another drug therapy.

Dr. Rini had two options to recommend to me.  The first is a brand new drug called Inlyta, but better known to the kidney cancer community as Axitinib, its generic name.  Inlyta was just approved by the Food and Drug Administration late last month.  It works similarly to Sutent and is approved to treat patients who have failed one targeted therapy (such as Sutent).  It's a pill, taken twice a day, so doesn't involve any infusions, etc.

His other recommendation was to go onto a clinical trial of a different class of renal cell drug, where they are comparing the response of patients to an approved drug called Afinitor to that of patients taking a new drug being developed, currently called GDC-0980.  If you enjoy reading clinical trial information, you can read about this one here.  I was intrigued by the idea of trying to hit this stuff via a different pathway, so was interested in participating in the trial.  After discussing it with Jim and with my online RCC friends, I decided to go ahead with the trial.  I will be having initial testing on February 20th, and will find out around the 28th whether I will be taking Afinitor or GDC-0980; the study is randomized so that they have some people in each 'arm' (taking one drug vs the other) but is not a blind study.  With this class of drug there is a very small chance of developing lung issues, which would resolve upon stopping the drug.  I decided the risk is worth it to try this out.  Axitinib is a good choice to try, but my instinct is telling me to go in a different direction.  Time will tell if that will be a good decision, but if I fail at the trial, Axitinib (and other approved drugs) will still be there waiting for me.

I won't lie, despite the fact that the amount of new disease is small, this set back felt like a blow.  It took me a couple of days to get past the emotion of impending death and get back to fighting mode.  It even took a day for me to really feel sad; I think I was in shock and denial for the first 24 hours or so.  It sucks but I have to try to work with what I've got if I want to keep living.  That's all there is to it.

Now for the less sinister of the changes I'm working through... My employer's medical insurance has been working to save money while also encouraging employees to live healthier lifestyles.  To this end, they have identified several conditions for which employees are encouraged to work with a nurse case manager to try to maintain or improve their condition.  The target areas include hypertension, asthma, high cholesterol, etc.  and of course obesity.  Targets are set for each program for which you are enrolled, based on the health condition, and you have periodic contact with your case manager.  If you meet your targets by the fall, you qualify for the lowest premium for the next year.  Our insurance premiums have 3 tiers - the lowest premium is charged to people who don't have any health conditions that need to be monitored or managed, or who have met all targets; the middle premium is charged to those who are enrolled in the appropriate medical management program(s) but who weren't able to make all of their targets, and the highest premium is charged to people who opt not to participate in the medical management program at all.

I'm in two programs - hypertension and obesity.  I've had high blood pressure since the 3rd trimester of my pregnancy with Rebecca.  It's been kept in control by medication, even with being on Sutent.  So compliance with that program hasn't been a problem.  On the other hand is the obesity program.  Based on the first documented weight of the year, they determine how much weight you need to lose that year in order to meet your target.  They have encouraged enrollment in Weight Watchers, which they pay for, in Curves memberships, which they also pay for, or enrollment in fitness centers located within the health system.  It's been a pretty passive program until this year - there was no requirement to do anything specific.  But this year that has changed.  I was told that I needed to enroll in Weight Watchers or in a Curves weight management program, or to go for a consultation at the Clinic's metabolic clinic - aka the bariatric clinic.  My case manager has been working with me for a couple of years now, and talked to the medical plan's medical director on my behalf before our first consult this year.  He waived any requirement for me to consult with the bariatric folks... I would hope so!  Also, given that I have had the ongoing issue of a leg ulcer while on Sutent, the Curves program wasn't being pushed.  So that left Weight Watchers.  Now, I could skip enrolling in WW and just work more seriously on losing weight on my own.  If I meet my weight target by the fall, then I will qualify for the lowest premium next year.  However, if I don't meet that weight target and did not sign up for WW or Curves, I would have to pay the highest premium next year.  By enrolling in WW, I am ensuring that I will pay the middle premium next year at worst.

Now, given a lifetime of obesity (since 3rd grade) and being on diets and eating plans of all kinds, I have some idea about what a healthy diet should be.  Understanding and sticking to it are of course two different things.  I have avoided diet programs for a long time, however, because I realized that the stress I felt about success vs. failure caused me to lapse into bulimia.   Fortunately for me, I am able follow WW in a low-stress setting this time.  Instead of going to meetings, I enrolled online.  WW has a food tracker app, so I can log in what I'm eating whenever I have my phone handy, which is basically all the time.  My family claims I am not annoying them with constant looking up, calculating, and talking about WW points values, which is so sweet of them because I would be sick of hearing it if I were them!  Another thing I like about this plan is that nothing is forbidden; there is no list of forbidden foods.  If I want something that is a high-point item, I just need to work around it.  Wow, eating like real life.

It's only been a week and already I've had success, having lost 6.5 lb.  I know this will slow down in coming weeks, and that is okay.  I truly believe that I will never be 'thin' and am not striving for that, even if my medical insurance is.  But there is room for me to eat a better diet, for sure.