Kill the Paps-Episode One, Update

We are exactly two weeks post-first infusion.  Second is scheduled for February 21st.  As I have said, I hope to use this little blog as a “look back” as I wind around this road, and I also hope to use it as a reference point for those who may be considering this journey for themselves.  With that said, this may be a little “matter of the fact” type entry, but I do hope to find some humor along the way.

First infusion began with labs.  They are looking at platelet count, WBC count, protein in urine, and the overall picture that the labs present of my current health.  High protein levels in the urine seems to be a fairly common issue while on Avastin, and it’s an issue I hope drinking the same volume of water as Lake Erie, daily, will prevent.  Growing gills as I type.  Once labs are drawn, it’s a waiting game for those results to come back.  Everything stops until then.  No meds are ordered, IV not started….zilch.  Lee and I used this downtime to trek over for a very early lunch outside the walls of the clinic-and clinic food.

Labs back, and due to it being my first infusion, no issues were expected, but nice to still know everything is in range.  Now, to the fun part.  (Fun being used very sarcastically, in my best “Sheldon” voice.)

FOUR sticks to get an IV. FOUR.  Did I mention FOUR?  24 gauge….so we are talking very small in the IV world.  Four different infusion nurses attempted to do the impossible…thread an IV into scarred veins.  Finally-it was in and flushing…and the angels sang.  (Get a port, everyone said….well..about that.  Avastin comes with a bleeding risk, and I would have had to choose to postpone the first infusion for 28 days post port…and at the time, that seemed like a silly idea…..I was questioning that decision with great thought as each attempt failed.)

Now, meds could be ordered.  Waiting…so much of the infusion day is spent waiting.  The guardrails in place to help prevent a medical mistake are unwavering.  A constant double-check of steps, a second set of eyes along the way…

Meds up…it’s go time.  At first, (10mg Avastin) we had a runtime of 30 minutes….almost instantly, the burning sensation from my hand to my shoulder become unbearable.  Once we slowed it to the rate of one hour, there was relief and the infusion continued.  Unlike my experience with Avelumab, there were no pre-meds.  No Benadryl!!  Seriously-Benadryl and I do not get along.  I become this agitated monster, so to hear no pre-med was music to my ears.  The next hour was spent watching nurses come and go, hearing various conversations around me….sipping my water..because Lake Erie and all….and then it was done.  Maybe a fifteen minute hold time afterwards, then IV was removed and I was free to go.  Compared to the Avelumab, so far, this was a walk in the park.  As I walked out, I realized so many were still there tied to infusion pump.  Hours of infusion time for so many of those undergoing treatment for various cancers.  I had a tinge of guilt as I walked out…that I somehow had cheapened the process by being done so quickly.  From lab to walkout-five hours.  (That includes the 45 minute IV drama.)

Back to the house…almost as soon as I was leaving, I began to experience the sore throat.  Not painful, but just a sensation that wasn’t there prior to the infusion.  I was prepared for the ocean of nausea that I had experienced on Avelumab, but for the first few hours….it didn’t come.  Later that night, some mild waves came to shore, but a single dose of Zofran took it back out to sea…or should I reference Lake Erie here too?  The next AM, that’s when Avastin showed me the love…the Avastin headache.  The Avastin headache was pretty much a forty-eight hour event.  Tylenol knocked it back down, but as someone who isn’t a fan of headaches….I was uncomfortable…but compared to the NIH experience…still… much easier. An afternoon of fatigue did come in the day after the infusion, but not debilitating. Twinges of nausea came in and out over the next three days, and then everything seemed back to normal.  Week two had a few moments, but again, a single Zofran and I was back on track.  I wasn’t looking around for the nearest trash can as I was while on the Avelumab.

Now, onward to the notes that I have kept during this.

  1.  Reduction in mucous plugs.
  2. Reduction in blood in sputum.
  3. Seeing some reduction in coughing.
  4. Occasional twinge in stomach.

Infusion two is just days away….what will this next post-infusion cycle bring?

To clarify/a disclaimer-this is a road using Avastin systemically.  This is not the same as injecting papilloma sites during the OR.  Side effects and outcomes/method are not the same.

Stay tuned!!!!