Hello all y’all! Lots of things have been going on over the past several weeks. Gwen is still traveling to and fro due to her participation in the drug trial in Boston. She gets her scans done here in Raleigh and meets with Dr. G. here, too, but goes to Boston to get her meds and have her blood drawn.
After her latest scans, Dr. G. was so excited she called Gwen at home to talk to her about it!
February 2016 – Gwen’s lung “cloud” first appeared.
May 2017 – Gwen’s lung “cloud” has disappeared!
Additionally, of the more than a dozen brain spots (aka “mets”), only 2 are visible in the scans!
Her latest trip to Boston was made a little extra special when she was met at the airport by 2 of her good college friends, Kristen and Rhonda. Her friends accompanied her to the appointment where they took waiting room selfies, and it sounds like they did a bit of shopping, eating, and enjoyed their time together.
Gwen was given permission to go a whopping 9 weeks in between appointments this summer – quite a change from the usual 3. So, if you are keeping track at home, her next scans will be mid-August.
Today, we were able to celebrate Callie’s birthday with Mom and Dad who came back down from NY, Justin’s parents on their way up to NY, and several family members from VA. (According to Callie, it was the best birthday party ever).
Tonight was the annual NC Lung Cancer Initiative’s survivors event (the past couple of years was a breakfast, this year was an evening affair). Gwen is shown here with other survivors and also placing her handprint on the survivors’ tree.
Thank you all for your continued support, prayers, and well-wishes! They are working! We love you!
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.
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!
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
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!
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!
School’s out for summer! Woo hoo! And also Gwen’s scan was today. I was able to go with her (and Justin) to listen to the results this afternoon, so you all are about to receive a firsthand account as opposed to the secondhand account you’ve been getting lately.
The scans showed that the cloud is slightly more dense than last month. The rest of her organs are clear, her other lung is clear, and her bone lesions look fine. The doctor referred to her lung as “patchy” (whatever that means) and the cloudy spots as “the cancer.” The cloud patches are not contained to one lobe of the lung therefore removing a section of the lung is NOT an option.
As I mentioned in the last post, Gwen is having some wheezing when she lies on her left side. This is apparently due to mucus getting trapped in “the cloud.” She has no other problems or symptoms, therefore the doctor told her that she can go climb the highest mountain she wants to!
As far as treatment goes, they are going to stay the course. Dr. G. says the other medication options out there right now aren’t as good as what she’s on now (sounds like there’d be side effects and such) and that in another 6 months there should be a few more medications that will be FDA approved that would be better options. So it sounds like, as long as there are no problems outside the lung and no symptoms, the Xalkori is still the way to go for as long as possible.
When the doctor left the room, Gwen said to us, “So I am basically fine, right?”
Justin’s response was something like, “Well that depends on your definition of fine…”
Justin and I were thinking along the same lines… uh… You have a cancerous cloud in your lung… Not exactly what we would call fine?
But apparently Gwen had been so nervous coming into today’s appointment – she was preparing herself for the worse, so slightly more dense but all contained in the lung was “fine” in her mind.
Dr. G. wants Gwen to go away for the summer and to not be anxious about all of this (easier said than done), but she does want to see her the moment she’s back in town. So the next scan will be in August.
In the meantime, here’s to hoping for a restful summer for all of us!
We’re looking forward to seeing our northern friends! See you soon.
…was yesterday. And we missed it. Sorry Gwen! But today, we celebrated by going to a survivors breakfast hosted by the Lung Cancer Initiative of NC. This was the second time Gwen and I attended.
Just so our lovely readers know, Gwen has a scan coming up on the 17th to check on the status of her lung “cloud,” which I learned today actually has a medical name. Do not ask me what it is because I cannot recall. A woman we met at the breakfast said that June 17th is her luckiest day of the whole year, so it will hopefully be a good day for Gwen.
But you guys, Gwen is nervous. She has been having some wheezing when she lays on her left side and feels like she has some shortness of breath when she is sleeping. Please send good vibes her way and pray for her!
(sidebar: Gwen’s doctor is currently at ASCO event which is the American Society of Clinical Oncology held in Chicago. This event is apparently a big deal in the cancer research world. We are hoping she comes back from ASCO with some cool information as we look ahead to a PLAN B for Gwen).
At the breakfast, we also met the local woman whom had completed a safari in Zambia with her husband when, on the grounds of their hotel, was headbutted and sent 12 feet into the air by a giraffe! (For more on that story, see here). She is a 4-year lung cancer survivor.
The keynote speaker was a 2 year survivor who happened to have had the same surgeon who removed Gwen’s lung tumor (back in January 2015). The speaker has been on and off chemo and his kidneys aren’t going to take much more. He has had parts of his lungs removed and still has a tumor in his lung that they don’t have a plan for as of yet. He spoke to us about the whole “learning you have lung cancer” process. Listening to that part of his story was a bit emotional for me – perhaps because he had the same surgeon telling him the news that Gwen had. It just transported me back to January 2, 2015 in the tiny little room off the main waiting room. Truthfully, I just wanted the keynote speaker to stop talking. I couldn’t make eye contact with Gwen. But as I looked around the room this morning, no one else seemed emotional at all! These people are all such warriors! They are living this daily – it is in their faces 24-7.
Which brings me to his next point. Why are these “survivors” called survivors when they are still battling? They should be called fighters. Gwen and I liked that. Lung Cancer is a constant battle. Those who aren’t “in the know” get the incorrect impression that if you are a survivor, you are cured. There isn’t a cure. These “survivors” are still fighting.
This man’s body is tired, however, his spirit is not. He basically said that the cancer was almost a blessing in his life. It woke him up and got him out of his daily rut. He also quoted some Jimmy V so that was cool. It has given his life a purpose; to go out and bring awareness to this cancer, and that it isn’t about the quantity of his life, but the quality.
Wow. What an awesome outlook.
And I would be remiss if I didn’t mention little Callie’s third birthday which was this past week.
She enjoyed a party with friends and family which included lots of time in a huge bounce house which explains the matted down hair in the cake photo. And the kids weren’t the only ones who had a good time…
Keep jumping, my friends. And steer clear of rogue giraffes.
Sorry I forgot to update after the scans… My bad. Chest and brain scans (we’re told) are good. We like to joke that her brain function has never been that awesome… Her pelvis was also screened. Her pancreas, liver, and such are also good.
The left lung did have a “cloud” present. This, and a low white blood cell count seemed to be indicative of her getting over a virus. But Gwen has not been sick, so this is a bit confusing. The doctor is not concerned, but this has us looking forward to the next scans in three months so we can compare!
Gwen was asked if she’d be willing to donate blood to researchers looking for a way to do a blood test for the ROS-1 mutation. She said, “Of course!”
This winter season of people getting sick and having perpetual coughs has also made Gwen ask people if they’ve been screened for Lung Cancer. So, remember, if that cough persists long after that cold is gone, perhaps it is time for a screening!