Had a long day Thursday, May 21st. Left for Boston at 6:45 am and arrived home at 6:30 pm. I had an eye appointment at 9:45 am. Then I didn’t have a blood draw until 12:30. Eye examine went well. No problems with my eyes. We spent a little time in the courtyard at MGH and then we went back to the car and I took a nap! I’m fighting an upper respiratory infection, probably bronchitis, so I was wiped out from our walk to the eye office. Thankfully when we met with Dr. Zhu at 1:30 he faxed in a prescription for a Zpak and I’m feeling better.

My phosphate levels were up again. They are now 7.7. So I am now taking 1600 milligrams of the binder 3 times a day. I’m having a variety of side effects. Trying to figure out if they’re from the trial drug or the binder. My throat is swollen – not sure if that’s part of the respiratory infection or a side effect from the binder. It hurts to swallow sometimes. Dr. Zhu actually gave me a prescription for lidocaine, but I’m not using it as when I read the instructions, etc. it’ll numb my entire mouth. I may use it at some point, but not yet. I’m constipated. That is more than likely from the binder. I’m taking Senekot and having a Miralax cocktail. My mouth gets sore, but this comes and goes – this could be from trial drug. Things are tasting different, but not always. I have water tasting salty and non-spicy foods tasting spicy. I tried to eat an apple and there was no taste at all, so I couldn’t eat it. These could all be from the trial drug. But, I think the salty taste could be from the binder. Also my muscles get achy once in a while – that would be from the trial drug.

The good thing is that none of these things are constant. I’m taking Advil for the sore mouth and swollen throat. Some people that have been on the trial for a while have indicated that they had some of these symptoms in the beginning, but then they went away.

In spite of all this, my energy level is better than it has been, so I’ve been able to do a lot more things and that makes life so much better.

I’ve done very well on the phosphate diet paying attention to everything I eat and staying below 600 mg per day – except for the two cookouts this weekend! Because the trial drug doesn’t let my kidneys process the phosphate there seems no way to avoid the phosphate levels increase. Again, with other participants the same thing seems to be happening. All of them that I’ve interacted with have had their trial drug dosage reduced. We’ll see what this Thursday brings. It will also be the beginning of my off week.

We had a great time at Jay and Heather’s annual Memorial Day cookout/party on Saturday. Yesterday we went to my friend Julie’s cottage at Hawk’s Nest Beach for a cookout with her family and friends. Had a wonderful time. The weather was perfect for both cookouts, food was delicious and the company was awesome. Very good weekend!

I think most of you that read this blog already know our wonderful news, but for those of you that don’t – RAY AND I ARE GOING TO GRANDPARENTS!!!! WOO HOO!!!! WE ARE SO EXCITED! Heather and Jay told us the news on Mother’s Day. They are due January 7, 2016. Can’t wait to get my hands on that little bundle of joy. In the meantime, we pray for a beautiful, healthy baby.

Thank you all for your continued love, support and prayers. They are so appreciated. You are all my strength!

There are only 2 days left and I’ll have completed 2 weeks of the trial. We had a long day last Thursday. Same routine – take blood, have an EKG, meet with nurse, take pills, fast for 1 hour, then have lunch and return 2 hours after pills were taken and have more blood drawn and EKG.

May phosphate level increased to 6.3 from 3.2 the previous week. Because of this increase, they increased the amount of the phosphate binder. I was taking 800 milligrams with meals and now I’m taking 1200 milligrams with meals. One thing that started happening a few days after the increase was that some foods were tasting different – some were more spicy. A weird thing was that water began to taste very salty. That stinks because I drink water throughout the day, which is something they recommend. It seems to be saltier later in the day – after I’ve taken the 3 doses of the drug. So I’m trying to drink more water earlier in the day.

Trying my best to regulate phosphate levels, but it is a challenge. I ordered a book recommended by another person that is on the trial at M. D. Anderson in Houston, TX and received it Saturday. It’s like an encyclopedia! But it lists all kinds of foods and what vitamins, minerals, etc. it contains. I’ve gone through it and highlighted foods I normally eat or have begun eating because of the phosphate levels. I’m sure I’ll be highlighting more things as I continue with this trial.

So, not perfect, but better than being on chemo. One very wonderful thing is that I’ve had more energy so I can do stuff around the house, i.e., laundry, dishes, cooking, etc. I’ve actually been doing the grocery shopping for the last 3 weeks. I hadn’t been in a grocery store in 5 months or so. So this is good.

Had a wonderful Mother’s Day with a cookout at the Beacham’s. Jay and Heather gave me a beautiful bouquet of flowers and Julie sent me a gorgeous drop pearl necklace and Gharandelli chocolates! Good thing I got the chocolates early in the week as once I started the trial I couldn’t have chocolate anymore because it’s high in phosphates.

The porch is done and looking beautiful! I’m enjoying it immensely. I still need a few more pictures and a cushion for the bench, but it’s looking good.

Thank you everyone for your support! You are my strength in this journey!

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!