Ray and I decided to go with the BGB 317 immunotherapy trial.  This is the trial that Dr. Zhu was somehow able to secure two slots for.  It’s a phase 1b trial.  So, that means a lot of blood work and monitoring in the beginning.  The dose was figured out in the phase 1a part of the trial.

I had my first infusion November 18th.  We left town at 7:30 am to arrive at Mass General for 10 am.  They needed to take several vials of blood first and make sure all my numbers were good.  They were and usually are always good.  Before they started the infusion (putting the medicine in via IV through my port), they gave me Tylenol and Benadryl.  The Benadryl was given through IV and WOW!  I’m sitting there and all of a sudden I feel very lightheaded and dizzy!  It was crazy!  I felt sleepy, but I didn’t really sleep.  After that, I had the infusion and it was without incident.  They monitored me for several hours, taking blood in between.

We finally left around 5 pm and never got home until 7:30 pm.  Long, long day.  Ray and I were both exhausted.  Most of the time since the infusion I felt more tired than usual.  I was sleeping good at night and on occasion taking naps during the day.  I saved my energy for Clemmy time and social events.  Finally, I started feeling less tired yesterday and did some things around the house.  It felt good!

We’ve met with Dr. Zhu two times since the infusion.  After the Friday infusion, had to return the following Tuesday for a follow-up.  I was exhausted that day.  Had a busy weekend with Clemmy and then I didn’t sleep well the night before.

After a wonderful Thanksgiving dinner at Diane & Bruce’s and a quiet weekend, I woke up Sunday morning with a red rash all over my neck, chest, stomach and back.  And, it was itchy!  I knew this could be a side effect from the drug.  It was itchy for a while in the morning and then it seemed to calm down.  Sunday night it began itching again.  It was so bad I couldn’t get to sleep.  It took a couple of hours for it to calm down so I could sleep.  If I had been thinking straight, I would have asked Ray to go get some Benadryl, but I didn’t do that.

First thing Monday I called MGH and they called in a prescription for a steroid creme.  Ray picked that up and some Benadryl.  The good thing is that it wasn’t that bad on Monday.  Ray put some creme on my back and I took the Benadryl before I went to bed and slept fine.

Tuesday it barley itched at all.  We went to Boston for a blood draw and met with Dr. Zhu.  He was concerned about the rash and is making sure it’s okay for me the next infusion, which is scheduled for next Wednesday.  I didn’t put on any creme or take Benadryl Tuesday night.  The rash is pretty much gone and never itched again after Tuesday.  All set for Wednesday’s infusion.

The family reunion in October was great.  It was good to see a lot of family members I hadn’t seen in a  long time and catch up.  We went out after to a pizza place in East Windsor with my cousins, aunts and Jim & Elaine.  Had a good time and we were home by 8.

Thanksgiving was wonderful as it always is at Diane & Bruce’s.  Clementine was the entertainment as she’s been walking for a couple of weeks now!!!  All 28 inches of her!!!!  She is too much!  And, she likes to walk around with at least one thing in her hands, if not two!  She’s 11 months old today.  She’s trying to talk and I expect a full sentence to come out any day now.  She did say ‘Nana’ last week.  That was a wonderful thing.

We took our annual trip to New York City with Aunt Wilma, JR & Penny, Kathleen, Lindsay & Megan, Aunt Pat and Donna, and the Kevin Foran clan.  We had a good time.  Went to Bryant Park and checked out their shops set up for the holidays — too expensive for me!  We went to Rockefeller Center and watched them prepare the Christmas tree to raise it up.  Didn’t see it go up, but it was up by the end of the day.  We went to the Metropolitan Art store and NBC Studios store.  A lot of walking.  I was pooped out after that.  We headed to Emmett O’Lunney’s on 50th Street.  Favorite restaurant and watering hole on trips to New York.  Had a great corned beef sandwich (what else??) and spent the rest of the day visiting with Aunt Wilma and everyone else when they returned from the sites they were checking out.  Times Square is right around the corner from this place.

We headed out to the bus early so we could get sandwiches for the ride home.  That didn’t work as planned as the deli was jam packed and the line wasn’t moving.  Ray got pizza from Ray’s Pizza – it was great!  I wish they delivered to East Hartford!  Lol

As we left the city we saw a bunch of Donald Trump protesters.  Not disrupting anything, just walking in a group with their signs.  Oh yeah, two people didn’t make it the bus when it was time to leave.  They were friends of the couple sitting behind us on the bus.  We ended waiting over 20 minutes for these stupid people to get to the bus.  I just think that’s rude.  If you’re 5 minutes late, that’s okay.  But they were obviously very far from the bus for it to take them that long to get there.

Had a high school class reunion meeting next week.  We’ll be celebrating 45 years next year!!!!  That’s crazy!  It was a good meeting getting caught up with everyone.  Nothing definite yet, but hopefully we’ll be having it at the Mill on the River on the Saturday of Thanksgiving weekend 2017.

Thank you everyone for your continued support, love and prayers.  You are my strength.

Lindsay, Megan, Ray and I

Ray and I having fun in NYC

Aunt Wilma. And I at the Today Show desk!

Ray in the Voice chair

Clementine! Playing with DeDa