July | 2016 | Bea Strong

We’ve had a busy summer so far and it continues to look that way. Thankfully I can participate in most social events!

So, after our two weeks at the beach we returned to Boston on Monday, the 18th for a CT scan and the 19th for review of the scan. I have had additional growth, still very minimal, but enough that I’m off the trial. I’m trying to enjoy my time off without any meds and have been doing pretty good.

Today I’m having waves of feeling cold inside, it’s kind of like chills, but not. And just an all over shaky feeling. I believe it’s withdrawal from the trial drug. I’m taking it easy and hope this passes before the entire day goes by. After all, there are things I want to do.

I will be starting a new trial sometime in mid to late August. This trial is referred to as LOXO-101. The official name of the trial is: Oral TRK Inhibitor LOXO-101 for Treatment of Advanced Adult Solid Tumors. It is a Phase 1 trial, but is scheduled to be completed in January, 2017. If I have good results from this pill, I can stay on it as long as it works for me even after the trial ends.

This trial is for patients who have an NTRK protein alteration. I have that. Julie found some good news about this trial and drug that it has been working on many patients. That is very promising information. Some hospitals are actually recruiting for the Phase 2 of this trial already, but not Mass General. I believe that the dose has pretty much been established though. I will take one pill in the morning and one pill in the evening.

Ray and I will be heading to Mass General Monday, July 25th for me to have yet another biopsy!!! This is actually for Dr. Goyal and Dr. Zhu to see what other mutations I may have and would work with some of the immunotherapy drugs out there. I’m scheduled for the procedure at 12 noon and have to be there by 11 am. So Ray and I will leave here around 8:30. I cannot have anything to eat or drink past midnight tonight. Please say some extra prayers that the procedure goes smoothly.

The next day, Ray and I will meet with the doctor running the new trial. Her name is Anna Farago. She specializes in this mutation-NTRK. I’ve spoken to her and she seems pleasant and very knowledgeable. Our appointment is at 3:30 pm, so I’ll get a good rest in before we have to get back on the road.

The other good word about this trial is that the side effects are minimal and well tolerated and there is no special diet!! Yeah! I’ve been enjoying my meals the last few days without any mouth irritation!

I have mixed feelings about this trial. After all, it’s my 3rd one! Part of me says, what the heck, let’s give it a try and the other part says, I have a good feeling this drug is going to do some damage. I’ll stick with the more positive feeling.

I’m also very happy to have my hair growing and that I got the okay from my oncologist to have it colored. I feel like myself again! It was a novelty to have white hair (let’s admit it, it was mostly white!UGH) and I enjoyed it for a while, especially when people said I looked like my Mom. But, having some color makes me feel much better.

I thank God everyday for all the positive things that have happened to me with this diagnosis. I thank him for all of you that pray for me and keep me in your thoughts. It is appreciated so much I cannot put it into words. I truly believe your prayers and positive thoughts have helped me tremendously throughout this journey. Thank you all you! You are my strength!

For those of you that don’t participate in Facebook, I’ll attach a few photos from vacation and of course some of Clemmy! She brings me so much joy! Can’t believe she’s almost 7 months! I feel bad, I don’t even have a picture of the Turkis’s at the beach.

Vacation was good and busy. Did have days to just sit at the beach and enjoy the sunshine. As always we have fun with the Turkis Circus when they arrive for their week. This year Julie’s boyfriend Kenny’s parents and brother came during the first week for a few days–all the way from California! And his brother came from D.C. We had a nice visit with them. The guys got to play some golf and Julie, Gayle, Heather, Clemmy and I got to do some sightseeing and shopping at Watch Hill and a place that was really nice with many plants and flowers and a few shops and a cafe, that I can’t remember the name of! Lol. It was only about 15 minutes away. During the last week Ray, me, Diane, Alisha and Mike went to Newport and had a good time.

Another thing that happened since I last wrote was Mom George’s 90th birthday celebration. Julie flew home from California in time to attend the party and Jason, Heather and Clemmy drove up for the day to celebrate with Nana George in New Hampshire. It was a wonderful day and Mom George had a great time with everyone.

I hope to do an update in the next month or so. I’ll try to keep everyone informed about the new trial as I learn things about it.

Love to you all!