I started the new trial on Tuesday, December 8th. We had to be there at 7:30 am, so we booked the Holiday Inn Express in Cambridge. It’s 5 minutes from Mass General–if there’s no traffic. But in Boston there’s always traffic so we left the hotel at 6:45 am and made it there by 7:15 am.
What a day!!! Anyone that knows me, knows that I am not a morning person. I don’t care how much sleep I’ve gotten, I’m just not a happy camper in the morning. I didn’t have anything to eat because I had to fast for 2 hours before taking the drug.

We had our own room with a tv and a hospital bed. Unfortunately, Ray had an uncomfortable chair to sit in all day. Anyway, once we were settled in the nurse had to take blood and urine (peed in a cup). Then she tells us that I won’t take the pill until the doctor comes, which is scheduled for 9 am. I am not happy!!! It was one of those communication is great if you use it moments. To try to make me feel better the nurse, Susan, says once your fasting is ended, you can have a yogurt and juice. UGH!!! I said, with a disgusted tone (as Ray informed me later), ‘I don’t like yogurt! I like pudding though.’

The doctor, Dr. Goyal, came around 9:30 or so. She’s really wonderful. She is really excited about me using this drug.  She told us that Dr. Zhu had sent my blood to an outside company and they found an additional mutation.  So it’s an extension of the FGFR2 mutation.  The pill I’m taking targets both mutations.  So they are very optimistic.

Long story short, I never took the pill until 11:59 am.  And then I had to fast another hour before I could eat anything.  There were all kinds of obstacles that delayed me getting the pill.  Once I took the pill, they took blood from me every hour and collected all my urine.  We never got out of there until 7:45 pm.  Very, very long day.

I’ve been on and off the pill since then because my phosphate levels were too high.  This was an issue with the last trial too.  I had another all day blood and urine draw Dec 28th.  Julie and Ray were with me.  The really fun part of this was that I also had to collect my urine when I went home (to the hotel) and turn it in the next morning!  Thank goodness I don’t have to do that again.

I had a CT scan this past Tuesday.  The doctor called me Wednesday to tell me that I’m stable.  That’s very good news.  I wasn’t on any meds for almost 2 months and only took 21 pills before I had the scan.  Looking forward to how this works after taking it for another 6 weeks and then have a new scan.  They lowered the dose because of the phosphate levels.  Hopefully this will work and I won’t have any breaks.  The good news is that I don’t have any side effects so far.  Early on my mouth was a little sore and I had some taste issues, but not this week.  My hair is growing in some places and not others.  Oh yeah, my eyebrows have started to thin and fall out!!!  Hope that doesn’t continue!  I’m not the best at applying makeup!

Many of you have seen pictures of me with my white hair!  What an experience that has been!  Many people have remarked how much I looked like my mother.  I even scare myself sometimes when I pass by a mirror – I scare myself because I see her and wonder what she’s doing there! Lol

Some of the guys

All the ladies at Jim & Elaine’s Christmas Eve.

Juls, Di, Me, Alisha

Dec 28th, the day of the blood and urine draw, Heather was put in the hospital because of high blood pressure with plans to induce her later in the day.  Julie was scheduled to fly home the next day out of Boston.  Heather was in labor by then.  Julie cancelled her flight.  We all headed home on Tuesday the 29th.