Updates from Mayo

It's cold, windy, and currently awful outside.  Current temperature is -7 with wind chill of -34.  So glad the dogs came with us so we get to go outside extra for potty time 🐕 On a positive note, our hotel is connected to Mayo via their subway system so most outside time is limited to dog trips or if we need to go to the car.  

It's been a busy visit and while I'm updating tonight--Tom still has one scan tomorrow morning that could affect treatment as well.  Here's what we know:

1.  Lab work has remained stable or improved overall. His CA 19-9 was 60, so good news for Dr. Truty.  One measurement (CEA) has actually increased--but all 3 physicians we spoke with today said all sorts of things can raise it and it's not near as accurate as a CA 19-9...so while it's concerned Tom and I a bit, they were not worried.  

2. CT appears to be overall stable, tumor is the same size, stents are patent, arteries and veins still intertwined with the tumor.  The CT did report a small amount of ascites, which is new--the oncologist and radiation oncology team weren't concerned, and we actually forgot to discuss with Dr. Truty 😲  Tom has zero symptoms related to ascites though. 

3. Meeting with Oncology team--lovely nurse practitioner and Dr.  They will be prescribing Tom oral chemo pills to take during the time he also receives radiation at Mayo to help it work better and he'll have to see them weekly during radiation.

4. Meeting with Radiation oncology team--another super nice nurse practitioner and Dr. Similiar to the  Mayo oncology team, they will need a meeting with Tom in the near future to get him "fitted" for radiation. Usually takes about an hour--they'll do scans, position him on the table, and then put 2 small pinpoint tattoos as markers for radiation.  Once radiation starts, he will receive about 10 minutes of radiation for 5 days/week, for 3 weeks.  If Tom is anticipated to be a surgical candidate--he gets a lower dose of radiation.  If they determine surgery is not an option--they increase the dose of radiation to give the best chance for better/longer control of the tumor.  

5. Dr. Truty--he is the one coordinating everything and happened to be our last appointment of the day as he only had afternoon clinic today.  He was glad to see the CA 19-9 continuing to drop and reported the CT looked good as well.  He will be watching for the results of the PET scan tomorrow.  Since our appointments were a bit out of order--the radiation team had actually set up to start on Feb 2nd.  HOWEVER, Dr. Truty really wanted 2 more chemo infusions...so Tom will get chemo on 1/28 and 2/4 with CA 19-9 levels.  If it comes down--amazing, if it stays stable--that's ok as well and Dr. Truty reported he's ready for next steps either way 😂 

Rough timelines for next steps: 

Hopefully radiation would start around 2/16 or 2/23.  They like to start 1.5-2 weeks after the last chemo dose. 3 full weeks of radiation would be early March.  

4-6 week break typically between radiation and surgery.  There would also be another set of CT and PET scans along with bloodwork to ensure nothing is changing.  ***They actually recommend a vacation or something "fun" during this time***  

Surgery goal would be mid April or early May assuming all goes well.  Dr. Truty's nurse said surgery 6-9 months from diagnosis is "fast" and 9-12 months is typical.  Surgery recovery is anticipated to be a lot--we were told to expect at least 6 months before Tom felt like doing much.  We will also be meeting with a dietician/nutritionist and endocrinology team to figure out what eating and diabetic management will look like post op without a pancreas and several other major organs.  We also got a contact of someone who has been through this surgery with a positive outcome on how to manage expectations and quality of life concerns, so Tom will be reaching out to them.    

As a side note--the scale here at Mayo clocked Tom at a whooping 152lbs 🎉Our local office may have him at a lower weight next week, but he's definitely gained some still.  

Keep fingers crossed for good PET scan results tomorrow and stable or dropping CA 19-9 levels for the next couple of weeks.  We are understandably anxious about moving past chemo to get closer to surgery.