Lucky you…you are going to get a “Twofer” before the end of the month.  I have my “I’m running late” update for you and then I’m headed to UNC tomorrow and will have another update for you this coming week.  You sure are a lucky bunch!

For all of you “thunder-herders” out there I know I have been quite delinquent in putting up a blog post with an update about my health and mental well-being, and I apologize for the lack of info, but a lot has been going on. Below you will find the latest and greatest information on NUT Carcinoma and Ben Brown.  Today marks 25 months of fighting cancer, not 3-6 months.  So, time to read the update and celebrate kicking cancer right in The Jimmy!....

I wanted to get everyone up-to-speed on my recent treatments, side effects, and symptoms. We will begin in the Thanksgiving-ish time frame as I feel that is when we left off in this journey.

· 11/17/21: I had my PleurX catheter placed in my right lung. I began draining pleural fluid daily from the right lung; as of last night, I'm getting about 175ml per day. (Please remember the first time I drained my right lung they got 1.3LITERS off the lung).

· 11/29/21: The thoracic team "roto-rootered" my catheter because I was having issues with it not draining at home.  After cleaning, I was good to go again; and It actually worked better than the first time.  

· 12/7/21: Office visits with Dr. Weiss, Cindy from Palliative Care, and an infusion. Discussion revolved around chemo: how strong of a dose can he give me and I still be able to have a decent quality of life.  The decision was made to "turn down" both of the drugs so we are fighting the disease, but giving me some relief.  This would fall under a "normal" office visit.  No curveballs or anything out of the ordinary popped up.  Next visit should have been 12/28/22 but because of Christmas/New Year’s we moved out a week to 1/4/22 where I would also get CTs and MRIs of the brain and sinuses, and most importantly the lungs - since we had been ignoring them during the time spent in radiation focusing on the spine and brain.  

o 1/4/22: MRI of the Brain and sinuses, CT of the sinuses, and lungs.

§ The two growths in the brain saw significant shrinkage.  One of the tumors is completely gone and the other is down to 2mm

§ The CT of the lungs saw shrinkage of the tumors in both lungs, in the range of 20-40%. 

§ The CT of the abdomen showed enlargement of a couple lymph nodes.  To be honest with you, I didn't even know I had diseased lymph nodes in my abdomen. That is the bad news...the lymph nodes. 

§ Conversation was had on whether we continue this regimen because of how bad the side effects are - nausea and severe fatigue.  The decision was made to remove carboplatin and move me to a one drug treatment of Irinotecan. Carboplatin made me feel like a giant turd.

o 1/7/22: Sped up to UNC by my personal racecar driver Ann to have a thoracentesis on my left lung to get some breathing relief.   The team pulled 800ML off the lung.  That was pretty significant! Decision was made not to go with PleurX and go into wait and see mode. 

o 1/13-1/16/22: A much needed trip to Las Vegas with my BFF Goob.  VEGAS! A very low-key trip of craps, blackjack, and sports gambling. Had to change some flights because of the first ice storm that came through Atlanta and Charlotte.  I switched over from AA to Delta and was able to get home as scheduled with a little running through Atlanta's airport.

o 1/19/22: Made the decision to go to the local ED to have them do a thoracentesis on my left lung again.  I did not feel comfortable with them doing the PleurX and would rather have it done at UNC.  The thoracentesis took a little while to happen due to understaffing and a busy day, but the team got the job done.  They were able to drain 925ml of fluid off of the PE.  I was given a diuretic to help with the swelling in my feet and large jowls that are forming from my steroids. A lot of pee-pee yesterday; zoooweemama!  I will only be on the diuretic for three days so I don't get too dehydrated. 

I will be at UNC at a minimum of Monday 1/24 and Tuesday 1/25 this coming week, with the possibility of Wednesday as well.   We will do MRIs on Monday then have pow-wows with the whole team; Tuesday will be any sort of infusion or treatment; and Wednesday would be the PleurX drain install if we head in that direction. 

I tried to keep this tight as possible and to the point so it didn't bore you.  Please let me know if you have questions regarding the information I have provided.

 #feelthethunder

Ben