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!

So excited! Just got word from Mass General that I’ll begin the clinical trial on Thursday, May 7th. We have to be there at 11 am. This is good. Means we don’t have to leave East Hartford until 8 – 8:30 am. I’ll have blood drawn, then I see Dr. Zhu, then I’ll be given the pills. Then I wait two hours and have blood drawn and an EKG. I have to fast 1 hour before taking the drug and 2 hours after taking the drug. On Friday we have to be there at 10 am and have blood drawn and an EKG. Then take the pills and 2 hours later have blood drawn and an EKG.

We will be staying overnight on Thursday. Julie and Kenny stayed at a nice place in Arlington a couple of years ago so we’ll be looking into staying there.

For the first month we’ll be going to Boston once a week. Then we’ll go every 2 weeks for the second month. Then we’ll go once a month after that.

We celebrated with Jay and Heather last Friday by going to dinner at Azteca. Had a great time!

Today I went to lunch with Diane, Alisha and Sharon. We went to Maggie McFly’s at the mall and ate outside. It was good and it’s a beautiful day!

Had a long day yesterday in Boston. Had blood drawn, then had a MUGA test of the heart. What an ordeal. They take blood and then mix it with radioactive material. That takes about a 1/2 hour or so. Then they inject this back into me. Then they put me in a bed, similar to the CT scan bed, and then ”bind’ me in so I won’t move and put a large camera over me and take pictures of my heart. This process took about an hour. We were there for a couple of hours. Then I had to go to an eye center a couple of blocks away and have my eyes tested.

We grabbed lunch on the road on the way home. When we got home we were exhausted and we both took a good long nap. Had a great sleep last night.

Looking forward to this next chapter in my journey fighting this cancer! I can’t thank you all enough for your continued love, prayers and support. We really appreciate it. You give me the strength to fight this fight!!!

Love you all!

Got a call from Mass General this morning. They cancelled my appointment because all the test results are not in yet. They rescheduled to next Thursday 4/23/15. They may make the appointment sooner than that if possible.

So Ray went to work and I’m going to enjoy this beautiful day!

I had the biopsy at Mass General on 3/30/15. Didn’t feel too good right after. A lot of lower abdominal pain where I couldn’t get comfortable. Felt nauseous. It seemed to be gas, so after an hour or two I was released to go home. The pain came and went until after dinner that night and it subsided. During the night I went to the bathroom and my urine was a dark yellow. Thought it was from some med they had given me. Tuesday I had a hair appointment (can’t miss that) and eye doctor appointment. Felt fine. Tuesday night got up to use bathroom as usual and had very sharp pain in back that came around the front and gripped me like a vice. Very painful. Lasted a few minutes and was gone. I went back to sleep. Wednesday I was very tired in the morning and napped. Had lunch and a couple of hours later I threw up. Weird. I had some pain that again I thought was gas and my stomach was feeling a bit queasy. I put off eating dinner for a while. I finally decided to try to eat and took two bites and the back and vice grip pain was back. I needed to throw up. I did and it was BLOOD! There were a few clots of blood and then a lot of fresh red blood. I called for Ray. Talked to Dr. Hong and we were off to Hartford Hospital emergency room – Ray, me and Julie. Ray let Jay know when we got there.

After hours of being poked and prodded, I was finally taken to a room at 5:30 am on Thursday. A few hours later a GI team came in headed up by Dr. Colin Swales. He suspected it was a bleed from the biopsy. They wanted to do an endoscopy to make sure it wasn’t anything else. A few hours later I was whisked off to have that done. Didn’t take long and it confirmed what Dr. Swales thought. Meanwhile, they still wouldn’t let me eat or drink because they might do another test. Finally around dinnertime on Thursday I was allowed water, juice or ginger ale. Yeah! Liquid diet.
Around 8 pm they moved me from the 7th floor to the 5th floor into a private room on the surgery floor of the Bliss building.

Friday morning I had another episode (pain included) with a bm and vomiting that was just dry heaves. BMs were the ‘old blood’ leaving my system. I scared a young resident right out of my room!!! I had a liquid breakfast and a soft lunch of scrambled eggs. They decided to give me a full diet for dinner. Heaven! Had mac’n cheese. 11:30 Friday night I had another episode. More pain, more ‘old blood’ in BM and vomited my dinner and more blood – old blood. I was very upset about this because there was a chance I was headed home on Saturday. I knew that chance had just flown out the window. So of course on Saturday they say they want to continue monitoring my episodes. They were taking blood every few hours at this point and my liver panel numbers were higher than they liked and they said I may have to have another procedure. They were also monitoring blood loss where I might need a transfusion. I opted to have a soft diet for Saturday. I ate scrambled eggs for breakfast, lunch and dinner! By breakfast on sunday I couldn’t stomach the eggs anymore and asked for something else. I think they bought me pudding. (After I said I wouldn’t eat cream of wheat!) Had full diet for lunch and dinner. Yes, it was Easter Sunday and I was in the hospital. Shed a few tears on Saturday when I knew I wasn’t going home and wasn’t spending the holiday with family. Had visitors on Friday and Saturday and Sunday though so all was good. Of course, Ray and Julie were there most of the time. Jay and Heather came every day, too.

At some point I asked about taking a shower. I think it was Sunday and was told that I needed to let the water run to warm up. After 5 minutes of cold water, I gave up. Thankfully I had hot water in the sink in my room and was able to wash up in there. I don’t know what it cost to stay overnight in the hospital but I would guess $20,000 to $30,000 and I couldn’t even get a hot shower! They had a lame excuse that they’ve been having problems with it.
I had a pain free BM on Sunday night so I was convinced I was going home Monday. Early Monday another intern came in and said my liver panels were still high and they wanted to schedule a procedure, ERCP, for Tuesday. I told them no way. I was going home and that was that. After a few hours of back and forth between the 2-3 teams of doctors I had they agreed I could go home as long as I had a blood test in 2 days and scheduled the ERCP for later in the week. No problem. I had been in there for 5 nights without much sleep. If the nurses or aids weren’t bothering me the noises made by patients on that floor kept me up. AND I needed a shower. Finally I was released to go home at 2:30 pm. Came home and took a 2 hour nap. Had a nice dinner and then a wonderful shower!

The ERCP was scheduled for Monday 4/13/15 at 7 am. I had blood drawn at my oncologist office on Wednesday. After waiting more than an hour, Ray and I were taken to a room so I could change into a johnnie for the procedure (johnnie stories to follow at a later date). I was just changing when the GI doctor showed up and said he just looked at the blood work from Wednesday and my numbers were coming down and I didn’t need the procedure. Ray and I were dumbfounded. We said we just want things in order for the clincial trial. He said, let’s do another liver panel blood test. If the numbers are up, we’ll do the procedure later today. If not, you won’t have the procedure. An hour and a half later a nurse came to us and told us my numbers were almost back to normal and I would not need the procedure!!! YAHOO!!!!

While we were waiting for the blood test results we had the opportunity to visit my anesthesia friends. Their office is on the same floor as GI area. Saw a few familiar faces. It was nice just visiting with them. Doctor that was going to do my anesthesia stopped by the room and visited with us too. It was just nice seeing people I worked with from HAA.

Ray and I went to IHOP for breakfast and celebrated. I texted the kids and Diane. Diane let everyone in the family know the good news. It wasn’t even a thought that the procedure would be canceled. It was crazy, but fabulous news! It meant I had no blockage which was big. Having blockage can cause all kinds of headaches down the road, so it was a very good thing.

Ray and I are headed to Mass General on Thursday 4/16/15 for the results of the biopsy. Hoping and praying that they found the gene mutation and that I’ll be able to get into the clincial trial. Meanwhile, I’m enjoying finally feeling better. It’s been a long two weeks.

Kitchen is almost done. We’re using it. Lost the 3 day Easter weekend. Some finishing touches on the backsplash and painting to be done and we’ll be there. I’ll post a picture when it’s all done.

Love to all. Thanks for all the prayers and positive thoughts. They are helping me. You all give me my strength to fight this battle.

Unfortunately, the test that was done awhile ago that found that FGFR2 mutation is not acceptable for the clinical trial. It was a new test that is currently in research. I will have to have another biopsy so that can test it the acceptable way for the clinical trial. Let’s hope and pray that they find the FGFR2 mutation as that is mandatory to be considered for the trial.

I’ll go to Mass General for this biopsy. They’ll be calling soon with the date and time.

Yesterday I had my last chemo for a while. I requested removal of the cisplatin so I feel pretty good today. Ray and I are going to join in the St. Pat’s celebrations today at Pappy’s and the Prospect. Will meet up with some family at Pappy’s and friends at Prospect. Looking forward to a good day.

Kitchen backsplash is in. Bruce and Ray hope to get started on putting it up on Sunday. Can’t wait to see it up. According to Ray it is a process and as different things are done, there is a 24 hour wait period for things to set. So it’ll be a while before it’s done.

Julie will be home on Wednesday! Can’t wait to see her and spend some time with my wonderful daughter!

Maybe the snow will stop by then! LOL! Hopefully by our beach vacation July 4th!

You are my strength! Thanks for all your prayers and support! Love to all!

Ray and I went to Boston Wednesday and met with Dr. Zhu and his APRN Michelle. They gave us a lot of information that we needed to digest and think about. Today I notified them that I want to do the clinical trial.

First of all Dr. Zhu did not want me staying on the cisplatin. This is the drug that caused my hearing loss. He was very concerned about further toxic reaction to the drug. So I had chemo today and only had the gemzar. So it didn’t take as long.

Today was my last chemo for a while. One of the requirements of the trial is that I don’t have chemo for at least 4 weeks. It’ll take at least 6 weeks to start on the trial. In the meantime, I need to go to Mass General for a lot of testing, i.e., physical exam, blood and urine work, EKG, ECHO, vision test, etc. Passing all these tests is necessary to be accepted in the trial.

The clinical trial is for a drug that specifically attacks the gene mutation that was found in my cancer. This is my chance to have a longer survival rate from this deadly cancer. If it doesn’t work, I can go back on the chemo that I’ve been taking for the last 10 months.

Ray and I will be back and forth to Boston a lot over the next several months as they monitor me very closely in the beginning and at least once a month after all is considered to be going well. They take CT scans every 8 weeks as opposed to every 3 months to see how the drug is working.

Hoping that I get accepted into the trial and have good results with this new part of my journey.

As always, thanks to everyone for their continued prayers and support. Love you all!