Tri, Tri, Trial Again

Let me begin with some fun shots from our time together at the lake. For those who haven’t already heard, our family hosts an annual triathlon that totals 1.618 miles (this is the golden ratio for you non-math people) and is therefore called the Nanoman, the complete opposite of an Ironman. Since we have all different ages and ability levels, we are given the course last minute and have to guess how long it will take to complete. The person who has the closest actual time to their guess wins and gets a much-coveted Stanley Cup style “trophy.”

Winners of women’s, men’s, and kids’ divisions.

We also had the annual neighborhood party/boat race and Gwen’s birthday this past weekend. We had 19 people from our family in attendance for all of these events. Of course, we did not get a shot of us all because we attempted to stay sane by not being all together in the same place for any length of time. And despite what it may look like, Gwen was going through some withdrawal from her last medicine and was experiencing some pain, headaches, etc. throughout the festivities.

McLaughlin grandkids

But I digress. Gwen and Justin made it to Boston Sunday, and thanks to the generosity of one of the families here at the lake, they had a place to stay for a few days. Callie got to remain at the lake with us instead of spending time at a boring hospital!

Callie rock jumping

Monday, Gwen had an eye appointment as part of the protocol for the trial. Tuesday, she spent 9 (nine) hours at Mass Gen as she was administered the first dose of the new medication (I don’t know what the medicine is) and had to be under observation for the day. She was excited to report that she started to feel better pretty quickly! Today, she was back at the hospital for a second dose and hopes to feel even better.

Mom and Dad then met Gwen and Justin in Albany to hand off Callie as they will now make their way back to NC just to turn around and come back to Boston mid-month.

Bye, bye summer.

Racing and Traveling

Updates are few and far between these days, which is a good thing! We’ll start back in September with the LUNGe Forward event that was held at the NC Art Museum this year. It was a great venue, and this year was a walk as opposed to a run which was really disappointing to people like myself who love to run so, so much. So, no medal winners to report on this year, but a lovely time was had by all.

#GwenStrong

Most recently, Gwen has had some scans, traveled to Boston for a report, and grabbed a new stash of medication while there. I was fortunate to be able to travel with her for this trip. I was worried about Boston in November, but thanks to climate change it was an amazing 68 degrees and sunny! We had a great day, other than Gwen’s airplane TVs not working on both flights.

Way too early in the morning on the first flight.

Boston Common

In June, her scans showed a mess of white spots in her lungs, and when we saw the comparison to this month, the improvement was obvious and measurable, even to our untrained eyes. There is also evidence of healing in her bones as scar tissue is present there. I don’t know much else as I was in the bathroom when the doctor showed up.

We have many things to be thankful for this year, and hope you all do as well. The next Boston trip is in 12 weeks, so we will touch base again then if I remember.

Happy holidays to you all!

They were decorating everything – Quincy Market

Let’s Try Something New!

Thank you to everyone who has asked about Gwen. We all appreciate your support and prayers so much!

This spring, Gwen received a white ribbon – part of the White Ribbon Project . She was super excited to receive this and help support this project which aims to reduce the stigma of lung cancer.

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Gwen, Justin, and Callie have been traveling and making their way up north with an ultimate goal of reaching Boston. And now they are stuck with us at camp.

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As mentioned in the previous post, Gwen has been approved for a single-patient clinical trial of Repotrectinib which is the first drug targeted to the ROS-1 and G2032R mutations. We are all very excited that she has been approved to try this treatment, and she received her first dose on July 9th!

Gwen had been feeling some soreness in her hips but has already begun feeling less sore since starting Repotrectinib. Unfortunately she is feeling some fatigue and has experienced some change in her sense of taste- especially with sweets. She said the bite of ice cream she had tonight was “gross” which is practically unfathomable to this family! Needless to say, she is pretty bummed out about that.

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Before ice cream was gross.

Gwen will return to Boston on July 23rd for more blood work and to get more medication. The plan will be to increase the dose from one a day to two a day. She will get scans again in late August.

Gwen Takes the Stage

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.”

She’s on the program cover!

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!

Gwen is (Locally) “Famous!”

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.

 

Merry Christmas 2019

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.

Gwen – 2019

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 Lung Cancer Awareness Month!

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.

Doing what we do. And looking like we got up at 3:30 am just to sit in traffic…

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.

And She Just Ran…

Hello again all! I have been a bit negligent in my updates, but as they say, no news is good news, right? If you are on facebook, then you have likely been keeping up with the goings on with Gwen. But if not… then here you go:

We have hit the road running with another school year after a full and amazing summer. Gwen spent time training for the annual Lung Cancer Initiative of NC LUNGe Forward 5K here in Raleigh. Her goals (other than, you know, fundraising to help the fight against lung cancer) were to A) run the whole time and B) to finish the 5K in under 35 minutes.

I am happy to report on Gwen’s behalf that she completed both goals AND that her fundraising team (#GwenStrong) was one of the top 10 fundraising teams! Thank you to all of you who supported her team from near and far. GwenStrong had a good showing in the medals as well with Gwen being the first female survivor finisher and Justin, Mom, and Dad all medaling in their respective age groups.

Just a couple of short weeks later, Gwen participated in another 5K! This one was a fundraiser at her school. Due to some favorable conditions, she was able to shatter her personal best time by about 4 minutes!

This week was a trip-to-Boston-week. She had scans in Raleigh on Monday and a check up with Dr. Shaw in Boston on Thursday. When we last got a scan report, we were told that she spot(s) in the brain scan were only noticeable to the drs. because they knew where to look (that’s how tiny they had become). This week, the scans were reported as being CLEAR. Nothing in the brain (I don’t think I will ever not feel tempted to make a joke here – sorry Gwen), and nothing in the lungs. No more lung cloud, no more pin prick tumors in the brain. Simply remarkable. The Boston skies were as beautiful as her scans.

Gwen feels very blessed. Thank you for praying for her, asking about her, thinking about her.

Science!

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!

Holla! Praise!

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).

This is Gwen and me with Uncle Kip.

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!