Clinical Trial Crushing: Week 8

(Stacey- this post is especially for you. Cheers to the decline of your work productivity. I’m home sick today so I’m this is probably going to turn into a novel.)

Hello my dear supporters, we are officially eight weeks into my trial treatment. I have faithfully taken my chemo pills everyday, twice per day, for the past two months.

I am pleased to finally report that Team Sultaire is kicking some ass.

Yesterday I went to Mass General for my check up. I knew it would be a long and grueling day of testing/waiting/testing/waiting/lather/rinse/repeat. That being said Cory, my incredibly thoughtful boyfriend, took a vacation day to accompany me for the longest day ever (Yep, you read that correctly. Jess Sultaire bagged herself a handsome gentleman despite having cancer. Single cancer crushers- it can be done!). This day included the same exact tests as the very first baseline day prior to starting treatment.

We hopped in the car just before 6am and made it to my first appointment in Boston around 7:30am. The dreaded eye exam. It was a much better experience this time around for a few reasons. First, It was 7:30 in the morning, meaning fewer patients, meaning less waiting. I was dilated, numbed, and they performed that godawful eye pressure test. I knew what to expect this time so it didn’t take 40 tries to get poked in the pupil. The trick is to take a deep breath, look directly at it, and not clench your teeth (so basically go against all of your natural protective instincts). In the end I looked like a cartoon character with pupils the size of quarters but the good news is that my peepers looked normal and the drug has had no adverse effects on my vision.

Cory was basically my seeing eye dog as we walked a few blocks from the Ophthalmologist’s office to Mass General Hospital. We then had a full day that mostly consisted of waiting in exam or waiting rooms. For testing- I had blood tests, pre-dose and post-dose EKG’s, and an Echocardiogram. The tests themselves only take a few minutes BUT the day lasts forever because you can’t “dose” (take your chemo pills) until your blood tests come back. Labs can take 2-3 hours to come back. Once you get the okay to dose, you need to wait another hour after dosing to have your post-dose EKG.

Oh did I mention I have to fast through all of this?

Finally we were able to leave once Pharmacy refilled my study drug. Our visit clocked in at roughly 10 hours not including travel time. Considering there were no snafu’s this time the appointment itself could have been worse.

We met with my girl Stacey for a delicious dinner in Boston. Getting to catch up with her was a great motivator to make it through my marathon hospital day (although it wasn’t so hard having Cory as live entertainment). Unfortunately, after dinner I got very ill and remained sick throughout the night into today. I’ll spare you the details.

Ok, ok, enough of the play by-play. You guys want the details. What’s going on. Here it is:

My tumors have decreased in size by 5% according to my CT scan!

This is the kind of news that I needed to push me forward. It is a reminder that it is not all for nothing. This also means that I only require check ups in Boston ONCE per month!

My doctors, family, and I are very pleased with these results and hope to keep truckin’ along for as long as we have to. I will be sure to share any new details that unfold.

On a final fun note, I have a little pony now!:

Check out this time last year vs. this week



Thanks a bunch!

I would like to thank everyone that offered to accompany me to my doctor’s appointment on Wednesday. There were a lot of you! One offer was even out of state (but anyone that knows Lisa Bednarz knows she’s a thoughtfulness overachiever). The love and selflessness still astounds me. I am all set for Wednesday and know that physically and spiritually I will not be alone. GO TEAM.

I had a CT scan today at Women and Infants. I overnighted the disc to Mass General so their radiology department can take a look before Wednesday. If all goes according to plan I’ll have a clearer idea about what is going on inside my body. I’m hoping for some visible tumor shrinkage.

Will update next week. Have a beautiful weekend everyone!

Two-Hundred and Sixty Four

It is hard to believe that I am 44 days into this trial. That is 264 chemo pills to be exact. In dealing with the side effects over the past few weeks I have said on multiple occasions that I just need a shred of evidence that this treatment is working so that I can “buy in”. 

Well, I am pleased to share that a small bit of information has surfaced. Yesterday I went to MGH in Boston for a check up and my doctor agreed that it would be suitable now to test my CA-125. FINALLY.  I received a call from MGH this morning:

CA125 on June 4th (Day 1 of the trial): 1228

CA125 on July 16th (Day 43 of the trial): 1096

My CA125 has come down 132 points in 43 days with an oral chemotherapy. Not too shabby.

The goal ultimately is to bring this number below 21 or as close to it as possible. We know this is possible because I did it once before. I recognize that I still have a long way to go but this is a better start than I had expected. I am scheduled to have a CT scan in Providence on Saturday morning. The CT scan will tell us more and hopefully I can share more good news next week.

I have been going to the majority of my doctor’s appointments alone by choice; however, I have one coming up on Wednesday (July 23rd) where I will need a side kick. It will be in Boston, very early in the morning, and last the better part of the day. If anyone is masochistic enough to volunteer for such a day please inquire within. I can repay you in the form of lunch and if you’re really lucky I’ll take you to the hospital gift shop. That place is like the effing Mall of America. 

To conclude, cheers to the first bit of good news.