If you read our last update, you read that Gwen gave a speech at NC Lung Initiative’s Annual Meeting. If you want to see it, it is now posted on YouTube!
About a month after Gwen’s big, local ABC11 TV appearance, she had the opportunity to speak at the Lung Cancer Initiative’s Annual Meeting as their “Survivor Speaker.”
I felt I was tricked into attending an ANNUAL MEETING, but we got to hear a bunch of cool updates about what projects local doctors and grad students are using their grant monies to fund. It is exciting to think about the advancements that may be coming in the future! The dinner was delicious, and Gwen did a great job sharing her story. The event took place on our Mom’s birthday, so it was nice we didn’t have to make her dinner. We are super thankful for all that these doctors, researchers, and volunteers are doing for lung cancer survivors and lung cancer research.
She has recently been scanned and had a trip to Boston – all news was that she is “stable.” She continues to have minuscule spots in her lungs and a spot on her femur.
Just yesterday, she ran 4 miles outside – no small feat as the pollen has started here in NC! We are now off school for at least 2 weeks whilst we practice the art of social distancing. Please keep your immuno-compromised and elderly friends, family, and neighbors in your thoughts and prayers! Stay safe everyone!
If you are in the greater Raleigh viewing area, please set your DVRs to record or tune in to ABC 11 on Sunday, January 19, 2020 to see Gwen on the 5:00 pm news! She and her doctor were interviewed for a story on lung cancer and the advances in treatment options.
If you can’t tune in, you should be able to watch the story here after it airs.
As usual, it has been several months since our last update. Gwen has been doing well and continues her routine scans in Raleigh, eye check ups at Duke, and doctor appointments in Boston. Recently, her doctor in Boston, Dr. Shaw, has decided to start focusing more on the research side of things. This has been a little upsetting to Gwen as she will continue to go to Boston but will have to see a doctor that she knows nothing about. Dr. Shaw will still be involved in the sense that she will be checking in with the status of her former patients, etc.
If you are a regular reader, you know that Gwen has had some minuscule spots in her lungs that have been closely monitored. These spots are the return of the cancer, however, it has been determined that she is still on the best treatment plan at this time. At her most recent scans/appointments, a spot on her femur “lit up.” ‘‘Tis the season for lights and all, however this isn’t really the type of lit up we like to hear about. Overall, the scans were considered good and everything else was listed as “stable,” so the spots in the lung and the spot on the femur will continue to be monitored, and the current targeted treatment will continue.
We are spending the holiday season in NY visiting our northern friends and family. It has been warm enough for the snow to melt and for the cars and kids to get muddy and gross. Gwen participated in the Cazenovia girls basketball alumni game on the 26th. She had a great time playing against girls who were born the year she graduated from high school
and who were still feeling really super competitive. She did score 4 points including a 3 from downtown (!) as evidenced by this celebratory pic:
This photo also represents our feelings, but especially Gwen’s, as we approach January 2nd, 2020, which will be her five year cancerversary! Given the 5 year survival statistics, which look extra scary due to the smokers who have lung cancer, this anniversary is an exciting milestone for our ROS-1der.
It seems that the past few times I have updated the blog, I have begun with “It has been a while since I have updated the blog…” and this is no exception. I personally have not had the best year health-wise and thus have been a bit of a slacker when it comes to updates, but as they say, “no news is good news!”
Back in March, I was able to travel with Gwen to Boston.
We had a great trip and had awesome weather for Boston in March. Gwen and I went to her appointment and then spent the day speed-walking the Freedom Trail.
Dr. Shaw was pleased with Gwen’s scans. As with previous reports, brain and abdomen were clear. Both of her lungs have several immeasurable spots that have been stable in size for several months. Since the scans have been stable, Dr. Shaw remains pleased with the current targeted treatment plan (Lorlatinib).
This past week, Gwen had another appointment in Boston. Gwen, Justin, and Callie took their time meandering up to Boston.
Again, the report was good – brain and abdomen were clear and those minuscule spots were still present but stable.
They will now be working their way on up to Maine to see the sights before heading back to NY for a few weeks.
Thank you for being such great supporters throughout Gwen’s journey (and for being patient with her slacker blogger).
It’s that time of year again! Are you aware, according to the American Cancer Society, it is projected that there will be over 234,000 new cases of lung and bronchus cancers in 2018 alone??? About 8,500 of them are expected to be in NC. Of the men and women with lung cancer, about 17.9% have never smoked.
For those of you not on Facebook and haven’t already seen, Gwen would love to help raise money for research on her specific type of lung cancer (ROS-1). Here is a link to her fundraising page: Gwen Strong – The ROS1ders .
I know it has been forever since I have written. Life has been busy and Gwen has been fairly healthy so there hasn’t been much to report! She ran in the annual LUNGe Forward 5K sponsored by the Lung Cancer Initiative of NC.
Gwen was the first female survivor to finish AND got first place for female in her age group! Justin won in his age group as well.
Here’s a shot of all the GwenStrong winners. We were well represented on “the podium.”
She had an eye appointment recently and things continue to look good there. Last week was “scan week.” I had the opportunity to travel with her to Boston. There are a few tiny nodules that are showing in her right lung. These apparently have been present on the past couple of scans, however they are so small that they were not noticed until an observant technician saw them last week and then the previous scans were pulled up to compare. However, these nodules were NOT present a year ago. Both Dr. Garst here in Raleigh and Dr. Shaw in Boston are not concerned at this time as these nodules could simply be a sign of some kind of normal inflammation that we would all occasionally get and never notice, but they will certainly be keeping a close watch on these spots over the coming months.
Other than that, the rest of her body scans were free and clear. Her brain continues to be clear of all the tumors that were present before, and Gwen is not reporting much in terms of side effects.
The FDA is getting ready to approve the drug that she is getting in Boston, which is cool, but it will likely only be approved for patients with ALK lung cancer
even though the drug is clearly also working for patients with ROS-1 so the FDA should stop being stingy with their approvals. At any rate, Gwen would like to stay on the trial to continue helping ROS-1 research, so she will still have to travel up to Boston but may be able to go less frequently in the not-so-distant future.
It was a lovely day in Boston and we actually got to walk around some. The picture on the left is the view from the hallway outside the drs office and the pic on the right is said hallway. Gwen and I both just really like that hallway. It looks cool.
Hello all! I realize it has been a while since my last update. Things in Gwenland have been progressing well. She has recently had an eye appointment that gave a positive report on the remnants of the eye tumor. Every scan she has had has been clear.
This Thursday, I had the pleasure of accompanying Gwen on her most recent trip to Boston. It was my first time traveling to see Dr. Shaw and I learned lots of things that I would love to share with you all
just in case you were ever curious about what it is like to be Gwen and in a drug trial in Boston.
Our time together started when she picked me up to head to the airport at 4:30 am. I thought it was sure to be a good day because neither of us overslept.
Apparently, while waiting for boarding, it is a good time to do schoolwork. I personally felt that it was an un-Godly hour for doing work, but said that I was living “a day in the life of Gwen,” so we did school work until we boarded.
Jet Blue is a fairly nice ride. We caught up on our HGTV shows on the flight and got our choice of snacks and drinks. I learned that you can get multiple if you want. Gwen suggested getting juice and then a water for later
but I didn’t listen to her. We also did schoolwork.
Gwen now knows all the ins and outs of getting to the hospital via public transportation. We took the silver line (bus) to the red line (subway) and were in a ton of tunnels and it was rush hour, cold, foggy, and rainy, so it was very crowded. I just followed her like a puppy dog. Our first stop was to a bagel shop down the street from the hospital where we got some delicious breakfast bagels and I purchased a water
because I had not gotten one on the plane.
We then headed to the hospital for Gwen’s bloodwork appointment. Then we sat. And guess what? We did schoolwork.
Dr. Shaw’s appointments were running a bit behind, so I think we were finally seen a little after 11.
Gwen’s scans were clear! Dr. Shaw was super thrilled because of how very clear the scans are. The spots on her bones that have been there since the beginning are showing signs that they are still healing – which is awesome. Gwen has no signs of any side effects to the medication. The medication is hopefully going to be FDA approved some time this summer, which would mean that it would be available locally in the not-so-distant future.
Next, one of the ladies running the drug trial came in and ran an EKG (I think that’s what she was going) on Gwen.
And then we waited until about 1:00 for the medication. There was some kind of hold up in the pharmacy… so we did more schoolwork.
When all was said and done, we ended up with about 45 minutes to “explore” Boston before needing to head back to the airport. I took a bunch of pics to document the fact that A) we did actually leave the hospital that day and B) it turned into spring while we were there.
After speed walking around Boston Commons
where schools like to take field trips and the Public Gardens where they love statues, we headed back to the airport. I was amused by the fact that Gwen was adept enough with the public transportation system to be able to help some other travelers at the airport. Also amusing side note: people smiled at Gwen all day – no matter where we were. Maybe it was her shirt?
We ate a quick bite at a sandwich shop at the airport and hightailed it to our gate only to find out the flight was going to take off a bit late. After a few other little mishaps (and more schoolwork on the plane), we finally got back to Raleigh about an hour late and caught the end of Lachlen’s first baseball game.
I hope you enjoyed this account of Gwen’s whirlwind Boston trips.