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.

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.

May in Boston

Gwen had another appointment in Boston yesterday. We took advantage of the appointment to have a girls’ weekend with mom, sister Kristen, Gwen, and I. We had a great time together and the weather was amazing! We crammed in as much walking as I could handle, met up with our cousin Lee on Sunday, and managed not to get lost.

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Some background/timeline information to catch us all up leading into the appointment:

-November 2020: blood biopsy performed with inconclusive results

-February 2021: routine scans showed new growth

-April: repeat blood biopsy showed positive for a mutation

-May: scans showed additional lesions especially on the spinal column, a spot on her shoulder bone that is growing, and that the few spots that were radiated seemed smaller. The non-bone areas were stable (abdomen, lungs, brain).

The blood biopsy revealed what is called a ROS-1 G2032R resistance mutation. Bad news: This basically means the cancer cells are outsmarting the medication. Good news: There is a new medication in phase 2 of clinical trials that is specifically targeted to the ROS-1 G2032R mutation. This is the first ROS-1 specific drug. Bad news: Gwen does not qualify for the trial due to having been on 2 other targeted medications and having had some chemo in the past.

Going into the appointment yesterday, the hope was to find a way to get the medication anyway. We were instructed to cry if necessary. Fortunately, it did not come to that as the doctors in Boston and Raleigh decided that this new medication, Repotrectinib, was still a good option for Gwen.

It will take a few weeks to jump through the paperwork hoops, which left Gwen still feeling anxious, but for now we know her current medication is still doing ok controlling the cancer in the other parts of her body.

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Radiation (again)

So this is a little overdue – partially due to my own forgetfulness. Gwen has met with her Raleigh and Boston doctors and it was determined that it was time to radiate her bone spots. Things were a little bit larger than previously thought, AND a new spot was found on her sacrum. It is ok if you have no idea what this is. I think only a small portion of the population does. So here is a visual for you:

stock photo

Upon closer inspection, a hairline fracture was discovered on the sacrum. The hope is the scar tissue that will remain after radiation will fill in the fracture.

She is actually getting radiation on the sacrum, left ilium (hip bone), and right femur. The spots have progressed to the point that a fracture is a concern. The doctors have told her to limit activity in terms of jumping and told her not to fall. I mean, I am not sure about you guys, but I am pretty confident we are all out here trying not to fall… This is the first time she has been put on any kind of physical restrictions, so that has been a little humbling.

Here is a pre-radiation appointment shot of the femur radiation spot:

Apparently, it isn’t as big as it looks

She had radiation this week and will continue next week. She is doing okay. Meanwhile, we are now fully vaccinated, so that is good and we are excited!!!

Happy Thanksgiving!

I hope everyone is doing well. Gwen has recently met with her doctors here in Raleigh to discuss the treatment plan moving forward. Not being present at the appointments, I am not exactly clear on all the details, but from what I am getting from my mom and Gwen is that they are going to put off chemo for now.

At present, Dr. G. does NOT recommend weakening Gwen’s immune system unless absolutely necessary, especially with COVID numbers on the rise. The plan is to wait and reassess after she gets scanned again in a few months. In the meantime, she is strengthening her dose of current medication. Gwen feels good about this plan.

And for some fun news, the Lung Cancer Initiative gave Gwen’s name to the Carolina Hurricanes for their “Hockey Fights Cancer” month festivities and as such, Gwen was surprised with a visit from Stormy this morning. This also meant that Callie’s class got to see Stormy remotely as she was in the middle of online learning at the time! The visit included a lovely gift basket that contained items she might share with her Canes obsessed niece Kenlee, and a message of support from the Hurricanes.

Go Canes!

Kenlee ❤ Gwen

I hope you all have a wonderful Thanksgiving and please stay healthy and safe!

It’s Lung Cancer Awareness Month!

I cannot even remember our last update! It has been quite a year for everyone for sure. Like everyone else, we have been hunkered down with Quarantine 2020 and there hadn’t been much need for an update. We were able to spend some time in NY this summer up at the lake – the COVID cases in that area were slim to none, and we pretty much kept to ourselves at the beach. Gwen, Justin, and Callie did a little bit of travelling with their camper on their way north and ultimately rented a campsite for a month near the lake so we could stay physically distant at night and on rainy days. Thankfully, we had wonderful weather this summer!

Lachlen and Callie enjoying the old-school swing set at the campground

Gwen has continued with her routine scans, doctor appointments, and trips to Boston; although she is now driving to Boston instead of flying. One of the scans that Gwen gets is a bone scan. From the very start of this journey, we knew that there were spots on her bones, and Gwen gets a shot every so often to help strengthen her bones to combat the cancer that is hanging out there. Over the past several months, doctors noted that one of the spots on her femur appeared to be growing. Due to the importance of this bone in carrying weight, it was determined that radiating it would be the best course of treatment. About a month ago, Gwen went through 10 daily radiation treatments on this spot. She tolerated the radiation well – only complaining about some pain after sitting for long periods of time which we are doing a lot right now with remote teaching but that is a whole other blog post.

Those lovely black blobs on her bone and in her hip are the cancer

That pretty much brings us up to this past week when she had her next round of scans. Unfortunately, another spot was found on her shoulder. She and Justin are in Boston right now and have met with doctors there about the next course of action. They will meet with Dr. G. here in Raleigh next week to finalize a plan, but as of today, it is looking like IV chemo in addition to the medication she is currently on will be the treatment. This is not what any of us wanted to hear.

For our long-time followers, you may remember that Gwen started on chemo right away, but she never finished that treatment because it was discovered that she had a genetic mutation. Since she never completed this, chemo is still an option for her, but it has always been the goal to seek other medicinal options as much as possible. Gwen REALLY doesn’t want to do this, as you can imagine, as she has been very blessed to have had such a positive response to the other treatment options.

Thank you for keeping her in your prayers as she navigates this new chapter in her fight against this awful disease.

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.

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!

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!