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.
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.
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.
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.
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!
Thanks to the many folks who have asked about Gwen (and the family). She is doing fine! As has been the case through much of this two year process, she feels great.
Many have wanted to know what the next step is (and when). Gwen called and left a message with Dr. Shaw’s office last Friday. Their office was closed Monday due to President’s Day which means she didn’t speak to someone ’til Tuesday. She has an appointment for the 28th. The person she spoke to told her that this would be to merely talk about the drug trial. Gwen was not satisfied by this notion as she really wanted some action to take place if she was going to fly up to Boston!
She finally heard back from Dr. Shaw this afternoon. The plan is to go through consultation Tuesday and some screenings maybe Tuesday or Wednesday. If she “passes,” the earliest she can begin the new drug would be next Friday afternoon as her body needs to be rid of her current meds for one weeks before beginning the new one.
The doctors running the trial will be notified that she’s coming, so hopefully things will be good to go and she’ll be able to return back home next Friday evening.
Many thanks to the organizations and individuals who have offered assistance with travel expenses. The offers and prayers are much appreciated and very touching!
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.
Hello everybody! The school year is winding down, and I know quite a few of us are looking forward to summer! We can’t wait to get to the lake. We are beginning to review for final exams down here in the south, so we know the end of the year is upon us (finally), and we’re pretty excited about that.
In other news, Gwen had an appointment with Dr.G, whom some of you may have seen from Gwen’s Facebook post, was rated in the top 10 for doctors in her field. Yay! We really like her.
As you may or may not recall, at the last appointment with Dr. G. there was a cloudiness in Gwen’s lung similar to what one would see with an infection, however she was not ill at the time. Well, at this visit, the “cloudiness” was even more so. Even Gwen could tell it was worse when she first saw the scans. So, it is unclear what it is, but the doctor continually referred to the cloudiness as a malignancy.
At this time, she is at the level of concern to “keep a close eye on it,” but the treatment plan is unchanged. Gwen went home with literature for the next type of medication options, and Dr. G. will be talking with other doctors about possible trials, etc, moving forward.
Gwen is Gwen. She has a positive spirit. It seems that in other cases of Xalkori resistances, there is never a doubt about whether or not a resistance is occurring… (But of course Gwen has to have something bizarre like an unidentifiable cloud that confuses people…) So she isn’t convinced that her body is resisting, yet.
The doctor wanted to see her back in 10 weeks but didn’t want to make her come back home from summering up north, so instead she will see Gwen in one month. I know I feel better about the one month plan!
Please, as always, keep her in your prayers, and thank you for all the love and support!
Gwen had an eye appointment at “Big” Duke today. Who knew? I didn’t. She called this evening and gave me the update so I could post it on the blog!
It was one of her fastest appointments at the eye doctor’s thus far – in and out within an hour.
For those of you readers who have really good reading comprehension skills, you may recall that Gwen’s eye tumor has had a pocket of fluid beneath it that has been getting smaller (albeit very slowly). This has been something that has been visible every time on the scans; even to the non-doctor folk. Well, the big news today is the fluid is shockingly ALL GONE! Everyone, doctor included, was rather excited about this.
The tumor is still there, and likely will always be there. The width of it is still decreasing. When it was first discovered, it was approximately 740 micro-something units wide. Today it was about 443 micro-something units wide. These are very advanced measurements.
You may also remember that when Gwen started the targeted treatment of the Xalkori pills, she was informed that this treatment was not known to break through the “blood-brain barrier,” which is why any progress that is made on diminishing the size of the tumor in her eye is amazing!
Who knows if the tumor is reacting to the medication or if this is a response to the cancer being inactive in other parts of her body?? Or simply the result of God’s handy work and the multiple prayers of all of her awesome supporters out there?? Thanks to all!
You may be asking yourself, “Self, will Allisen please stop with the posts this week? She hasn’t posted in weeks and weeks, and now she won’t shut up!” The updates just keep pouring in, and also we have gotten a whole lot of rain, so literally it has been pouring here.
On Monday, two days post-5K, Gwen had her next round of scans. Today, Veteran’s day, Gwen, Justin, Mom, and I piled in to the doctor’s office and awaited the results. And I mean we really a-waited… for hours. Apparently Veteran’s day is a popular day for oncology visits.
Once again, the news was good! Scans were clear. We looked at side-by-side images from August and November. The technician’s report indicated that there seems to have been some things that had cleared up since August – signs that perhaps Gwen had a touch of pneumonia or bronchitis back in August? She had felt fine, and those spots were obviously not anything that stood out to the doctor or the CT technicians in August – just that things are more clear now.
Gwen talked about a couple of things with the doctor – like “chemo-brain” effect – that happens about once a month or so (which is basically trouble thinking about complex things more than usual) and it is likely that it is a side effect of the medications she is taking. Her MRI indicated that everything with her brain was good. She has had a couple of other minor issues that she will monitor and report if things seem to change, but nothing that is of concern to the doctors at this time.
And in case you were wondering, this is what it looks like when Gwen asks questions:
Don’t you feel like you were there with us?
Gwen got the good news that at this point in her treatment, research indicates that it is fine to only have the Xgeva shot (for her bones) once every THREE months – she was having that one monthly. So, she got it today and is now good to go until February, which is when she will have her next scans as well.
At the end of the appointment, Dr. G ended with a “Merry Christmas! Now I have to go see sick patients; you are not one of them!”
We are just a few weeks away from the Lung Cancer Initiative of NC’s LUNGe Forward 5K. There’s still time to join us for the run or from the comfort of your own home via a donation to the team: Gwen Strong. Thank you for supporting the advancement of lung cancer research!
Gwen is moving right along with her training for the 5K… She did 3.1 miles today! She put on the caveat that it was on a treadmill, so that’s not as good or something, but whatever. She ran 3.1 indoor miles!
Tonight, Gwen and I were discussing how fortunate we are to live in the Research Triangle area. She has been reading blogs of other people her age with lung cancer and is also a member of a Facebook group for ROS-1 mutation folks. One of the members of the Facebook group just passed away. He was 33 and had been diagnosed 3 years ago, but didn’t know he had ROS-1 until 2 years ago. Another site Gwen was reading contained discussion amongst people about whether or not their oncologists had done the testing for the mutations. Gwen said it was evident that some of these doctors were only familiar with the 2 main ones, so when those came back negative, no further testing was done. It really puts things into perspective and reminds us how awesome it is to be connected to doctors at Duke and specifically Dr G who leads up some lung cancer research. I have a hard time fathoming doctors not being aware that there are more than just 2 mutations out there!
Switching gears for a moment, it had been awhile since I’d seen Gwen, and they stopped by today. I was taken aback by the fullness/thickness of her hair! And I happened to make a comment about her hair that people may think is not the nicest, but Gwen and Justin both laughed because the comment I made = the comments Gwen has made about her hair, too. Of course. For those of you who don’t know the two of us, we oft say the same things. Sometimes it is creepy. So anyway, here is her hair. What comment would you make?
We asked the kids, thinking surely it must be obvious. Clearly it is not to them.
The kids said she looked like: Elvis, she has mountains on the back, ocean waves in the back, a boy, etc.
No kids, she has a hair helmet, duh.
Justin tells me that recently conversations at their place have gone something like this:
Gwen: “Callie, go get your helmet on so we can go for a bike ride. I already have mine on!”
Justin: “It’s kinda chilly out. Do you think I need my hat on for my run this morning?”
Gwen: “Well, I’ve got mine on…”
It’s just so much thicker than it was before! I tried, without success, to get her to go for a bowl cut – I mean, what better way to show off the thickness?