Thursday, November 29, 2012

Still here... kinda sorta

Physically here.  Mentally, emotionally, not as much.  The past few months have been a whirlwind to say the least.  And I for one am exhausted.

Health first... as of October, there was still not a slot open for me in the BMS936558 trial that I hoped to get into.  And my scans showed growth of both liver mets, along with a new one sprouting up.  The pelvic met grew a little.  The lungs were more indeterminate, since they are tiny and hard to catch at that size on CT.  So Dr. Rini felt it was time to let go of the trial and start taking Inlyta.  He said that if he knew there would be an opening in the next four weeks or so that he would be okay with me waiting it out a little longer, but that he didn't want to end up in February or so, still not in the trial, but with a lot of progression of disease.  I agreed with him; I was jarred enough by the growth of one met from 2cm to 5cm.  My tumor load is still low, relatively speaking, but I definitely don't want it to continue to increase.

***EDIT 11/30/2012  I forgot something about the trial when I was writing this, but remembered it later based on a friend's comment on Facebook.  I recently learned from another RCC patient that the investigators are no longer enrolling new participants to receive the combination of the trial drug and Votrient.  That would have been the side I would have been on, since I've already had Sutent.  Apparently too many liver toxicities were found.  Learning this fact made me feel better about missing the trial; it told me that this was not the trial for me after all. END EDIT ***

So, I started Inlyta. I had a delay of a couple of days while my insurance decided I was approved for it.  I had to laugh; I got an approval letter from them about five days after I actually started taking the drug.  At that point I knew it was approved because I had to pay the standard "high tech" copay for it, rather than thousands of dollars.  

I'm taking 5 mg twice a day; oh the joy of having to remember to take it two times.My thyroid TSH level also went sky high, so I saw an endocrinologist who increased my Synthroid dose and changed it to twice a day.  I'm supposed to take the Synthroid alone, on an empty stomach, with nothing after it for 30-60 minutes, so I can't take it with the Inlyta tablet.  My phone has turned into a medication reminder alarm, which has been super helpful.

The side effects of Inlyta are similar to those I experienced on Sutent.  I've had some diarrhea, fatigue, and mouth sensitivity.  Unlike Sutent, Inlyta is taken continuously; no two week break periodically like I'd been used to.  So I've felt the buildup of effects now that it's been almost two months. My mouth is becoming much more sensitive to heat and spice, and my tongue is tender, so hard and crunchy foods are no longer that appealing.  The good news is that effect keeps me from snacking on salty stuff, which is my downfall.  I've kept off the weight I lost while on Afinitor.  That weight loss helped me to meet the goals set by my employee health insurance to earn the 'gold' level of premiums, which is the lowest amount.  So for next year I won't see an increase in our premiums... yay!  If I hadn't made the goal it wouldn't have bothered me since the insurance pays SO MUCH for my tests and drugs now that frankly the premium is a huge bargain to me. But it's still nice to make that goal.  

The "new" side effect is actually an old one in a new place. Hand and foot syndrome is pretty well documented among cancer patients on some drugs.  While on Sutent I got painful red calluses on my feet that made walking painful.  That hasn't happened so far now.  However, a couple of weeks ago I developed a sore spot on the pad of my left thumb, just above the crease at the knuckle joint.  At first I thought it was a paper cut, but then it started to look like a blister.  It wasn't until I started to develop smaller sore blistery-looking sores on the same spot of both of my middle fingers that I realized it was HFS.  It actually hasn't been too bad; still able to use my hands though sometimes opening a container is difficult.  I use lots of lotion on my hands now and hope that I don't continue to sprout these things.

Then there are my legs.  A few weeks ago I noticed that my calves were both really sore; if I sit for a while, when I get up they are very tight and I have to limp around until they loosen up.  Dr. Rini felt them, and could tell where the pain was, I think because they are a bit swollen.  I'm back on blood thinner shots (oh yeah, have to remember to give myself two injections every day too... poor me! ha ha), plus it's exactly the same pain in both calves, so we're not too concerned about blood clots.  By the end of the day my hamstrings are also really sore and sometimes my feet.  I did a little searching on Google to see if there was a connection to Inlyta, but didn't find much.  I'm now wondering if the bad thyroid level is contributing... and if so, hoping that  the higher dose of synthroid will soon relieve the pain.  It really sucks, and gives me a new insight into people who live with chronic pain.

So yeah, I'm kind of a mess right now, though still trying to push through.  Work is insanely busy and stressful right now, as we learn on the fly how to use our new system to get the data out that people want from us.  I always felt a good level of confidence in my skills and knowledge at work, but that has evaporated.  The rest of my team feels the same way, as we're all struggling.  We are all learning, and definitely know more than we did two months ago, but there is a lot more to learn before we feel comfortable.  It is a decidedly "un-fun" place to be right now. Of course, the fatigue and other side effects I'm experiencing are not helping my attitude.  If I can get rid of the leg pain, that will help my outlook tremendously.

Bleah - that was just a big dump of whine, wasn't it?  Oh well, it's not always sunshine and roses on this path.  I'm still fighting and still hoping for better days ahead.  But pain and fatigue make those days seem less likely. It's easy to keep your spirits up when you don't "feel" like a sick person, which has been the case for me for a long time.  I still haven't adjusted to the difference.

More later, as I am past my bed time.  


Barbara said...

Liz, your optimism and humor continue to inspire are amazing! Thanks for the update. {hug!}

Sarah Yule said...


I'm so with you with this, I too am week 8 I to Inlyta.

Whine as much as you like!!!!!!


Sarah Yule

Suzanne Fortunato said...

Oh Liz, stay strong. It sounds like a tough journey you've been on. know there are folks out there who care and are cheering you on.

Regina said...