Began the trial on Thursday, May 7th. We got to Boston with plenty of time for our 11 am blood draw. That was taken from my port. Also had an EKG. Then met with Dr. Zhu. We discussed the trial and the low phosphate diet I need to follow. I needed to fast 2 hours before taking the trial drug, known as BGJ398, and fast 1 hour after taking the drug. I met with the research nurse and took 2 pills. One is 100 mg the other is 25 mg. The pills need to be refrigerated so they were in a bag with cold packs. We were given a few to get us through the rest of our day. Thankfully Ray had cold packs in our cooler also. After I took the 2 pills Ray and I sat in the waiting room. I had to wait 2 hours to have more blood drawn and another EKG, but only 1 hour to eat. We went to the hospital cafeteria at 1:30 to have lunch.

I was feeling kind of out of it, but as Ray says, this is how I am when I’m in a new and strange place. So I decided to make a salad to start with this low phosphate diet, while Ray got a couple of burgers and chips. We got in line to pay. The cashier said something and I didn’t hear him, so Ray says ‘put your salad on the scale’, I said, ‘what?’ He repeats himself and I put my salad on the nearby empty napkin dispenser! He looks at me like I’m nuts and says, ‘you need to put the salad on the scale’. I say, ‘oh’, and remove it from the napkin dispenser and put it on the scale. When we sat down to eat Ray proceeds to go over the entire incident at the checkout and we are crying we’re laughing so hard! OMG! I guess I was a little discombobalated!!!!

After lunch we went back to the waiting room and when it was time I had more blood taken via needle in my arm and another EKG. We found out that the research blood must be taken via a needle and not from the port. So it looks like I’ll have a port draw when possible, but most of the time I’ll have a needle in my arm, back of my hand, whatever vein is available as I’ll have 2 blood draws each time I go there.

We got on Route 93 to go to the hotel in Arlington and finally 45 minutes later we were at the Walgreens on the same street as the hotel. Had to have the prescription filled for the phosphate binder that I must take 3 times a day with meals. That took another 45 minutes. We finally got to the hotel around 5 pm. When we tried to check in they said they didn’t have our reservation. I had a confirmation, but after several attempts I was unable to access it on my phone. Finally another person at the front desk asked if Ray’s name was Raymond. She found our reservation. It was under Beth and Raymond Mary!!!! When I filled out something online I know that it asked for guest name and I put Mary Beth and Raymond George. Gotta love computers!!!

Once we got to our room I just passed out on the bed! I was exhausted. They had a complimentary dinner that was served until 7 pm so I could only sleep for an hour. After dinner we discussed our day and Ray found a better way to get back to Boston in the morning.

Had a complimentary breakfast in the morning and were on the road at 9 am. Still ran into traffic but not as bad as 93. We got to Mass General a little before 10 for my blood draw and EKG. I had my pills at 11 am and we took off roaming the halls of MGH. They have a very nice courtyard near the cafeteria and we went out there for a while, but it was actually cold there. We found a nice sitting area inside and checked emails, etc. We decided we’d get lunch on the road, but had a pastry snack to tide us over. Finally at 1 pm we were back in the waiting room. I had another blood draw and EKG and we were on the road home around 2 pm. We got home around 4:30 and just chilled for the evening.

So, today is day 3 and I’m feeling good. No side affects at all. In my interaction with other BGJ398 participants there is an issue with the phosphate levels. Even those that follow the diet closely and take the pills that bind the phosphates have elevated phosphate levels. Most of them have reductions in the mg of the trial drug. But they’ve also had tumor shrinkage. So hoping for the best. Unfortunately, in the almost 7 weeks I was off chemo I got new lesions on my liver and lungs. So hoping and praying this drug works as well for me as it has for others.

Had a nice visit today from nephew Deke and his girlfriend Kelly. They live in Boston and were headed to a friend of Kelly’s who lives in West Hartford. It was so nice of them to stop by to visit us. They gave me a beautiful bouquet of flowers. Found out that there’s a flower warehouse on Park Avenue – that’s where they went – who knew! Will be celebrating Mother’s Day tomorrow with Heather & Jay with Heather’s family at her parents house. Got a beautiful pearl necklace earlier in the week from my wonderful Julie along with a bag of Gharadelli chocolates — thank goodness they arrived earlier this week as I can’t eat them now!! There’s a few left that Ray can enjoy!

Headed back to Boston this coming Thursday. Expect it to be the same kind of day as Friday–2 blood draws, 2 EKGs and pill taking.

Will have a CT scan at 8 weeks. That’s when we’ll really know if the drug is working or not. That’s the last week of June.

Thank you for your love, prayers and support. We really appreciate it. You are my strength in this battle!

Love to all!