Snake in the Nose

Many of you will need no further explanation of today’s blog post title.  For those who are wondering if there is a literal snake in the nose, the answer is no, but the struggle is real nonetheless.

An update to my last systemic Avastin update.

Yesterday, was an in-office scope.  (Snake in the nose.)  Based upon the CT, we were hopeful the larynx was indeed papilloma free, and it was!!!!! My last OR procedure was in December 2017.  Yet, that wasn’t the part that excited me the most.  There was actual pinkish tinted tissue where one would assume my vocal cords are.  No web.  Nada.  Nothing.  Remember-zero surgical intervention since December.  The only treatment since that time has been systemic Avastin q.3wks.

We know, based upon CT results, there has also been a partial response already taking place in my trachea.  We also know, based upon reports of other patients using this therapy, the pulmonary disease is very slow to respond, so we are cautiously optimistic that down the road we will begin to see a partial or complete response in the lungs.

I just returned from COSM, where we were able to hear about some truly ground-breaking research/trials coming for the RRP community.  Systemic Avastin was covered in the RRP panel session, and I can’t wait to officially share notes/minutes from COSM. So, today is a short update, but an exciting update.

I’ve embedded a collage.  Top left, is OR pic of larynx December 2017.  Fuzzy top right is me trying to do anything while still recovering from an OR procedure.  Bottom left pic is again, December 2017.  Bottom right-April 2018!!!!!!


I want to be sure to point out something.  Systemic Avastin isn’t a cure.  I’m not cured.  What it is giving me is a break.  It’s a suppressant of my active disease.  I’m still in an every three week infusion pattern, and we aren’t ready to begin to phase into what my maintenance dosing schedule will be.  The obstacle we will face regularly is getting insurance approval for off-label care.  My insurance provider is approving me in five dose increments.  I’m hopeful that with reports of disease improvement, we will continue to gain those off-label approval letters.

So, today, I celebrate my beautiful (to me) larynx.  I celebrate less coughing.  I celebrate no trips to the OR.  I celebrate that I am, for the most part, tolerating the drug well.  My blood pressure has leveled.  Still high, but this appears to be my new normal while on this drug therapy.  If it begins to trend upwards of where it is now, we will intervene with a RX.

One last update-I did the port!  After three weeks of recovery, I am happy to say, “BEST DECISION!”  My fourth infusion was 100% stress free.  I’m a fan.  Thank you to each person who encouraged me to go down the port path.  (I still wish the light sedation had worked on me! Ouch!)

Happy Spring!  I love spring, even though it doesn’t love me.  The vibrant colors of trees as they awaken from their winter slumber gets me every single year!