Frequent Flyer

Happy spring! I hope you all had a joyous Easter! We are just finishing up our Spring Break and got to have a lovely visit with our sister Kristen. Gwen’s friends swung by from NY, too. Gwen, Justin, and Callie went to Florida to visit Justin’s parents (who work at Disney) for the first part of the break. Things have been busy around here… mostly for Gwen.

When last we updated, she was headed to Boston to see about getting into a drug trial for a different medication. The earliest she could see the doctor was the Tuesday of that week, I believe. They ran some blood tests and her white blood cell count was too low. She was told that the low count could have been a result of her Xalkori still in the bloodstream. Prayers went out for the count to go up. (A little boy a church added Gwen to his family prayers that day).

The prayers worked, because at the time of the next blood draw her counts were just high enough to qualify her for the trial. She began that Friday (one week after stopping Xalkori). The new drug is called Lorlatinib.

She needs to travel to Boston for checkups and to pick up her refills, basically, every three weeks.

At the end of March, she let her Raleigh Dr. know that she was experiencing some dizziness. Tests and scans were ordered right away (this was about a week ahead of when her next scan was scheduled anyway). It was determined that things were looking good and that the dizziness was some sort of lingering motion sickness from the frequent flying. You see, after that first visit to Boston, Gwen’s subsequent trips have just been day trips, like she’s some sort of fancy business lady or something. (You should ask her about the millionaire she sat next to sometime). Anyway, she is still having some trouble with this and hence was told NO spinning rides at Disney! None!

At her latest check up about a week or so ago, her scans were very, very good. Dr. G (here in Raleigh) said that she could not be more pleased with the results. The spots in Gwen’s brain are diminishing! The cloud in her lung is stable.

So this brings us to last week. Gwen and Justin drove back from Florida in time for Gwen to fly straight to Boston on Good Friday to see Dr. Shaw. The folks up north were pleased with what they saw, too.

Boston!

Gwen did not run in the marathon. But here’s the finish line!

Gwen is also participating in a second trial. They are using her blood to see if they can develop a blood test to “diagnose,” if you will, ROS-1. So when she goes up north, they take a lot of blood from her. Hopefully they can learn some stuff from this trial!

Happy Easter!

Happy Valentine’s Day!

Well, our updates skipped from Thanksgiving to Valentine’s Day, so I hope you all had a great holiday season and the New Year is off to a nice start. Gwen, Justin, and Callie took a lovely Christmas cruise with Justin’s side of the family and returned in time to spend Christmas day with the rest of us back here in reality. A few of us got to spend the holiday with a lovely stomach flu, so that was fun. Other than that, the holiday break was quite nice!

Gwen had her latest appointment with Dr. Garst today. The official report is that her lung “cloud” shows no significant change from November, however when you look at the scans, visually it appears improved! Her bone scan results were deemed “Stable.”

The results of her brain MRI showed “spots of unknown significance.” My response was, “WHAT??”

So, apparently there are some spots showing up in her brain… something on top and something in the back. When you look at the scan, these spots appear like cancer spots would appear on a scan, HOWEVER, these spots are not acting like cancer in that they did not absorb the contrast that Gwen took for the MRI like cancer spots normally do. Of course, like much of this journey, the doctor has never seen anything like it.

Thankfully, things are going to kick into high gear to try to figure out what is going on and hence what the next steps will be moving forward. On Thursday, Gwen will have a spinal tap to test her brain fluids. Friday, she has two appointments set up with two different “brain doctors” at Big Duke in Durham. Her scans will also be sent up to Dr. Shaw in Boston for further consultation. I’m not sure how much information we will get this week, but we will keep you posted!

Please keep Gwen in your prayers. Please also add, if you will, our cousin who had surgery last week to remove a tumor in her lung. Boo lung cancer!

 

Thanksgiving 2016

Gwen had her latest scans yesterday. Much to the surprise of everyone, the scans came back showing no change! Gwen and Dr. Garst were both expecting to see growth in the lung cloud. The doctor said it was quite surprising, actually, that there had not been any change. Gwen had been preparing herself emotionally for a tumor to be forming and for the eventual change in medications. So, this is good news, for now. She will continue the current course of treatment (Xalkori). The rest of the scans looked good.

We were fortunate to spend Thanksgiving with our parents, my in-laws, and Gwen’s in-laws. Lots of good food and great desserts!

Our family has a tradition of going around the table (before we eat), and each person states what they are thankful for this year. Some of our “thankfuls” from the dinner table this afternoon, just to name a few:

• That Gwen had a good appointment
• That Gwen has such a large support system
• Modern medicine
• Turkey (Callie)
• Family
• Teachers

Then we all ate like crazy. Another tradition is to go on a walk in a feeble attempt to make room for more food.

So we walked and then came home to eat some dessert!

We thank all of you for the support and prayers that you have given to Gwen. We hope that you all have had a fabulous Thanksgiving and may God bless all of you!

 

Summer Scan Time

Greetings all! We have returned from our lovely time up North, which means, sadly, that school is starting this week. We had a very nice summer with a lot of beach days, very little rain, and nice side trips and visits with friends.

We also attended a wedding in Erie, PA.

Oh yes, and Gwen had a birthday.

Upon our return, Gwen had her check-up with Dr. G. complete with brain scan; good news, her brain is still there and the scan showed all is clear. Also, she had a CT scan and a bone scan (it has been a year since her last bone scan).

Prior to discussing scan results with the doctor, Gwen asked Dr. G. about a ROS-1 specialist that some members of her ROS-1 facebook group have mentioned. Dr. G. knew right away about whom Gwen was referring and said that they could certainly set Gwen up with the ROS-1 doctor, Dr. Shaw, (located in Boston). She informed us that Dr. Shaw’s group is the group that discovered ROS-1 and that she would certainly be a valuable resource moving forward.

The CT scan showed IMPROVEMENT in the lung cloud! Gwen just knew it was going to be better. She had a feeling. The cloud has been present since February and got increasingly more dense through June. We compared today’s scan to the ones done in May and June and today’s looked better than both May and June’s scans! The cloud is still there, but it does look a bit less thick, if you will.

We then discussed her bone scan and compared it to the one done last August. (As a reminder, previous scans had shown lesions on her right hip and on her T4 vertebrae). The bone scan today did not show anything on the right hip OR the T4! There was a spot on the back side of her left hip, but Dr. G. wasn’t sure what that was. She continues to get shots every few months for her bones to help strengthen them.

Dr. G. remarked that Gwen was the healthiest looking patient she had seen all day! Such a nice way to wrap up the summer. Her next appointment will be in 3 months. There will be no changes in the course of treatment at this time.

On a separate, but related note, we hope to see some of you at the LUNGe Forward 5K which is being held September 25 this year (as opposed to November; avoiding election season). Gwen is famous because she is on their official publications.

Please consider walking or running with us on the Gwen Strong team! Or you can participate from your couch!

Thank you all for your continued prayers and support!