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.

‘dem Bones, ‘dem Bones

It has been so long I almost forgot my password! It has been quite an eventful spring/summer for Gwen and family.

As you may remember, Gwen had some spots in her brain that her last medication was doing well to control. Well, all good things come to an end. There was some back and forth about radiating the spots, but alas, the tumor board here in NC did not concur on this course of action. Her doctor in Boston was adamant that radiation be done, therefore they took a trip to Boston May 9th and 10th for radiation. The plan was to stay on the current medication as it was doing a decent job on her bones (the spots looked to be healing).

In this time, Gwen has been getting regularly scanned in Raleigh. Her team of doctors has worked well with Gwen and Justin to accommodate their summer travel plans, which include a large chunk of time in NY as always, so the most recent round of scans was moved to Boston, and as long as they were heading East to Boston, might as well throw in a trip to the Cape!

They left NY around July 17 and returned around July 21 (I could ask Gwen the exact dates as she is in the next room right now, but apparently I am too lazy). The latest scans revealed that the medication was no longer working on her bones (In fact, today she mentioned her bones hurting, like the kind of pain you feel if you press on a bruise).

Once again, we are thankful that science is staying one step ahead of this dumb cancer, and Gwen is able to get in on a clinical trial that is in phase 1 (her previous trials have all been in phase 2) and has shown some good results so far. The downside here is that her NY vacay plans will be cut short as she will have to go back to Boston for several days next week to go through all the hoops one needs to go through to start in a clinical trial. Then, it is our understanding, she will need to go to Boston once a week for 3 weeks, then every other week for a couple of months, and then once a month for who knows how long. One of these trips is scheduled for the first day of school, so that’s fun.

In the meantime, Gwen, Justin, and Callie are making the most of the summer and hanging out with us in NY.

Continued prayers are always welcomed! I will try to be better with the updates (but NOT after every single trip to Boston as Justin jokingly suggested I do because there’s just no way I will get my act together to do that).

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

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.

Third Winter/First Spring in Boston

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.

Sitting and schoolworking

View from the hospital

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.

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!

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!

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!

Gwen’s Patchy Lung

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!

Gwen and Lachlen tubing real S L O W like.

We’re looking forward to seeing our northern friends! See you soon.