Doing Much Better

So he slept 37 hours of his first 39 hours home after his infusion.  He was in bed most of the day yesterday but did not sleep all the time, just didn't feel good.  Today he has been up most of the day and has only slept a little.  He has improved a lot each day.  Next infusion is on the 5th, hope he doesn't react to that one more than he did this one.

Long Day

Up at 5:15 a.m. and leave at 6:00 to make it for a 7:15 appointment for blood work on Friday.  Then for a liver biopsy.  That didn't take that long but he had to lay there for 3 hours after to make sure there was no bleeding.  Then off to see the physician's assistant, the doctor was out, for the results of the morning blood work and a check-up.  His liver and kidney functions were all normal, waiting to see the results of the thyroid, adrenal & pituitary.  That takes several days.  He is still sleepy most of the time, sleeps a lot.  But he got the green light for the infusion.  It was scheduled for 2:30 but didn't get it until 4:00.  Since he had been over 6 weeks without treatment, the doctor needed to write a new order. (couldn't take last 2 of the first round because of high liver numbers and couldn't take the first of the second round since he was on prednisone).  We never got home until 6:30.  He went straight to bed and it is now 4:00 p.m. on Saturday and he has slept most of time.  Hope tomorrow is better.

We met someone in the waiting room who is at the end of the same trial (2 years) and he never had any side effects.  Don has had many.  Also in re-reading the information we were given on our first visit, about 80% of the 242 having completed the study experienced a side effect from the first drug he received and only 10-15% from the drug he just started.  Here's hoping.



Change in Plans

Don got a call from Moffit yesterday with a change in plans.  He was supposed to get an infusion on Wednesday, but since the spots on the liver did not improve, he needs another biopsy of the liver.  He will have that done on Friday, then have his infusion.  It's going to be a long day.   Thank God the lady across the street and I walk each other's dogs when needed.  She has a miniature Schnauzer and the first time Bruno pooped while she walked him she said "Now I know why I have a small dog".  The arrangement is working out real well.

He is finally off the prednisone which really made him balloon out.  He is also very short of breath.  Don't know if that is a result of getting off the prednisone, even though it was done slowly, the extra weight or whatever, but I want him to call them on Monday since they want to hear about every little change.  Will let you know how Friday goes.

Test Results

We got results from the CT scans and MRI.  Some of the tumors have gotten smaller and some have gotten bigger and another has showed up on the liver.  So he has 5 on the lungs and 2 on the liver, but it has not gone to the bones or brain.  The doctor said that is all good.  The 2 infusions he got sometimes take several weeks to start working.  Basically he said that if there is not a big increase in the tumors, it's good.  The company conducting the trial has a limit of 25%.  In other words, if the condition worsens by more than 25%, the patient is out of the trial.  Between the "better" and "worse" I'm not sure where his percentage is, but he's way within the limits.  He did not get an infusion today since he's still on steroids (prednisone) so he will go to the 2nd infusion in 2 weeks and get only 5 total.  The trial is very strict and everyone in it has to stay right on schedule.  There have been about 150 so far and it looks like the sequence he is in is working better, the infusions of ipilimumab first followed by infusions of nivolumab second.  So it looks like we're good.

Stray Dog

Remember the stray dog Bruno befriended?  He was finally caught, brought to a no-kill shelter and neutered.  His collar had started growing into his skin so his skin was ulcerated and he had a cut on his ear.  They neutered him, worked with him, got him back to health and a gentleman who lives here alone adopted him.  He's a really nice dog, walks well on a leash, lets people pet him, and still gets to play with Bruno.  Awesome save.




Temperatures barely got to 60 yesterday, 30 this morning with a high of 46.  Just a tad bit chilly for Florida.

Took a Week Off

Since Don had no blood tests to go for, phase 2 doesn't start til Jan. 7 and he's doing fine on the prednisone, we decided to go to Titusville for a week.  The same place he workcamped last winter & the winter before.  We got to spend some time with our old friends Paul & Joyce which was great.  Other friends, Chuck & Kathy had just gotten back to Titusville after spending time with family over the holidays, so we got to enjoy them for an evening of dinner & cribbage.  We were not too far from New Smyrna Beach so we visited with Don's 93 year old Aunt Arleen.  We also spent some time with my 92 year old Uncle Chick in Melbourne along with my cousin Beth & husband Bill.  It's always nice to spend time with friends and family.  It gives us strength to face whatever is in store for us in the next 3 months of phase 2 of his treatment.  Tuesday is testing and Wednesday we see the doctor and get the first of 6 infusions.  Anxious to see what the results of the tests will be but also a little nervous about it.  Again, we want to thank you all for your support and words of encouragement.