Yondelis: The Chemo that Keeps On Giving

Yes, I realize it's been nearly 2 weeks since I posted my last update.  My only excuse is Yondelis.  And it's a good excuse too!  Yup, it pretty much kicked my ass (figuratively for sure, literally I hope).  Not that I ever thought this was going to be easy, but clearly Yondelis is not the "kinder, gentler chemo" I had hoped for.

I was doing just fine up through mid-afternoon Wednesday, 02/13, when it started to hit me.  The initial symptom was extreme fatigue.  I had to make myself lie down for about 2 hours that afternoon and ended up going to bed early that evening.

The following morning (Valentine's Day), I was hit by the full force of Yondelis.  Symptoms included:

• Debilitating nausea (note: usually this has the distinct advantage of causing you to lose weight.  Not with Yondelis!  I gained 10 lbs of fluid weight in my gut!)
• Extreme fatigue
• Body aches
• Weakness
• Shortness of breath
• Total and complete inability to comprehend technical problems (i.e., chemo brain)
• Trouble speaking clearly (also chemo brain)
• Headaches
• Bloated feeling (even though I was eating/drinking very little)
• Don't feel like eating/drinking (because of being so bloated)
• Ins and Outs not matching (because I was retaining fluid)
• Generally miserable

Thankfully I had a follow-up appointment scheduled that morning at my Oncologist's office (Holly had to drive).  They drew several blood samples from my port and hooked me up for fluids.  Of all the counts, the one that really stood out was my Liver Enzymes.  The normal range for this is below 50; my number came in at a whopping 2252 (over 40x out of range)!  The doctor also indicated that elevated liver enzymes is known to contribute towards nausea, fatigue, and loss of appetite.

I was told though that this is just something that Yondelis does and that, in time, my Liver Enzymes should return to normal.  Based on my latest labs, the number is still around 778 (from 02/20), but another lab will be taken on Monday (02/25).  At this rate, I seriously doubt that it will be < 50 by the time Round #2 is scheduled to begin (on 03/04).

My life these past 10 days has consisted of 6 long trips to the Oncologist's office and basically feeling crappy.  It feels kind of like having the flu, where you feel miserable, sometimes wish you were dead (so the misery will stop), but know in the back of your mind that this is (or at least should be) temporary.  Combine that with the rainy, dreary, and cold weather we've had for about the same amount of time and you'll find yourself dreaming of being healthy and living in Florida!

Things are not all bad though:

• I found the right combination of meds that kept the nausea under control.
• No problem with neutropenia (low neutrophil count), a problem that plagued me 10 1/2 years ago.
• Thus far, my kidneys do not seem to be impacted by the treatment.  Fingers crossed!
• The fluid weight gain has reverted back to net-zero lbs gained this round.
• We will save even more money on our cruise now since I am medically banned from drinking any alcoholic beverages during my Yondelis treatment (due to my elevated Liver Enzymes).

I think the thing that's been most baffling to me is that I just don't know when these symptoms will end.  For example, when I woke up Friday morning (02/22) I felt almost like I had been reborn.  I drove myself to my Oncology appointment that day with a smile and a spring in my step.  But by the time I got home (mid-afternoon), I was completely exhausted and ready for a nap.  Come the next morning (02/23), I felt like crap again, with virtually zero energy.  The best I could do was to move from couch to couch all day.

Contrast this with the AIM regimen which, despite the extreme lows, I could clearly tell when my body hit the reset button.  And once I was on the way back up, each new day was consistently better than the last.  With Yondelis, I still haven't figured it out.  Maybe it's because my Liver Enzymes are still so elevated, I just don't know.  All I can do is take things one day at a time.

That brings us to today.  This morning felt like Friday morning.  I felt stronger and better and was motivated by the (rare) orange ball in the sky to get out and get moving.  Holly and I walked a slow 3 miles at our favorite park today, which is quite an accomplishment for me right now.

In closing, I wish to thank everyone for their name submissions for my chemo bag.  I promise to review those in the coming week and declare a winner.  I also wish to thank friends and neighbors for all of the cards, gifts, meals, songs, encouraging words, etc.  The graciousness shown our family will not be forgotten!