Underwhelming developments

Despite having a trip to Mayo this week--this update is pretty anticlimactic 😐  Sorry in advance!  

We did try a new/different hotel that's pet friendly and near a park area/outdoor pool for future summer needs and the kids.  Reviews were a bit all over the place, but we liked it well enough. Decent free breakfast, shuttle that runs back and forth to Mayo all day, free parking, etc.  Downside was the pool/hot tub was closed currently, but should be up soon they said.  

On Wednesday afternoon Tom had labwork and a CT scan scheduled at 430ish.  They were super behind for the CT scan, so we didn't get back to the hotel until almost 8p. We grabbed dinner at the hotel restaurant, which it turns out was slamming and pretty good.

We were scheduled to have a PET scan that was denied (again) by the insurance company until the results of the CT scan are in and the Dr. can "prove" to them the PET scan is needed/justified.  So with that fun fact, we just hung out until our appt with Dr. Truty around 2p today.  

True to form, Dr. Truty probably spoke less than 3 dozen words give or take.  Essentially Tom's labwork looks good (better than our July visit) and is trending in the right direction--they use the CA 19-9 and a CEA marker that are both decreasing.  He reviewed the CT of his chest and abdomen/pancreas and everything appears stable.  There are some tiny nodules in Tom's chest CT (lungs) that were present that the Dr. doesn't think are involved with the cancer as they have never shown up on any PET scan, the same slightly enlarged lymph node near his left clavicle, but he's watching them as well.  Dr. Truty verbalized he was "not concerned" with them. He was very clear that he wants Tom to continue at least 4 more rounds of chemo, see him again mid November, and re-evaluate again.  Tom is going back on Tuesday next week to get the PET scan completed from this trip as Dr. Truty submitted the request today.

Tom is admittedly a bit frustrated as Dr. Truty is still not very willing to discuss surgery until at least the next visit.  "We need to see the chemo doing its job."  He also reminded Tom that after surgery, he won't just pop back or go back to his "normal" life; unfortunately, his quality of life with suffer.  Dr. Truty did remind Tom that he was doing all the hard work though!  

Like most things in our lives---Tom and I interpret the same information very differently.  He's confident that Dr. Truty is worried he won't be a surgical candidate and will have to continue chemo forever.  Given the fact that Dr. Truty said none of those words--I approach it as he only wants to take one step at a time (despite how annoying it is to everyone else) because things can change quickly with cancers, in particular this type.  He doesn't want to talk about the "what ifs" just the "it's time for this."  We do know of a local friend who completed 16 rounds of chemo plus the 3 weeks of radiation before surgery and as of right now, appears to be doing as well as expected.  We've also joined a few online pancreatic groups and learned about a woman on her 34th round of chemo😮

So for now, we are continuing chemo for at least 4 more doses (13 total doses) with the potential for more if the numbers/test results aren't where the Dr. wants them.  We knew in the beginning it would be a marathon--I think Tom especially is just sad we can't set a definitive finish line yet.  

We did leave the girls at home to help manage the dogs and be able to attend school.  Huge thanks to our neighbors and friends, Mike and Jenny for letting them sleep over and corralling them to school this morning.  

Comments

Post a Comment

Popular posts from this blog

Initial Diagnosis

Image
As some of you are already aware, Tom has been diagnosed with pancreatic cancer, at least stage 3, as of 5/14/2025. We had his first oncology visit on Thursday 5/15.  The hope is they can do surgery to resect or remove the mass(es). This gives him the best chance of a full recovery. We are waiting for the surgical teams to review his case.  He is scheduled to have a port placed on Wednesday 5/21 for his chemo to be administered. He will receive chemo whether surgery is an option or not. So far we like our local oncology team, but have also reached out to the oncology team at Mayo to request a consult. They are ranked 3rd in the nation for treatment of pancreatic cancer. We have requested his imaging/records to be sent for review and determination regarding which provider can see him and when we can get an appointment.  We will try to update at least weekly on this site to make sure everyone has access to updates. Thank you for any ongoing support, prayers, good thoughts, ...
Read more

Chemo #3--25% complete

Image
We're officially through 1/4 of Tom's chemo of the initial plan! He's supposed to have a total of 12 rounds and he finished up #3 over the weekend.  Let's start with the positives 1. His bloodwork continues to look good--no concerns at this point. 2. Some of you have heard, but we did confirm with the oncologist (here at least) that Tom has actually been staged at a 2B (which is like half a step better than a stage 3)  Mayo may have updates once they do their scans--but good news for now! 3. We have an appointment this Friday to get the process started for genetic testing for Tom. 4. We saw the dietician and the nurse navigator both briefly during chemo.  The dietician recommended some new medication in hopes of helping with digestion and addressing the GI issues/weight loss.     Onto the less good news---this round of chemo was a bit harder for him 😞  The cold sensitivity is increasing, his fingertips primarily, so he's wearing knit/st...
Read more

Mayo updates and future plans

Image
First off, Mayo is crazy!  I'm sure this holds true for all Mayo campuses, but like 1/2 the town of Rochester is Mayo related.  It's almost like it's own little town.  You go through a security checkpoint, places to eat, grab coffee, lounge/waiting areas, a guy playing the piano, an outdoor courtyard area, etc.  We had appointments in 3 different buildings--but most are connected by a "subway" underground level or they have some skywalks as well.  Then Tom's surgery to check for peritoneal spread was completed at their Saint Mary's campus (like 1.5 miles away from the main downtown campus)  TLDR at the very bottom for those of you that just need the bullet points!   Onto the updates, overall mostly what we expected.  His bloodwork has pretty much stayed the same and his CA 19-9 (cancer marker in the blood) has continued to decrease which is positive.  Dr. Truty was very direct about what he looks for before continuing to surgery--3 main ...
Read more