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!
It’s been a busy week in Gwen Land. She had a spinal tap yesterday and is having some residual lower back pain and headache from that today. I went with her to Duke today so Justin could work (according to the local news, we teachers are absent too much…).
So here’s what we did while we were waiting:
Anyway, the first appointment at Duke this morning was literally with a Brain Surgeon. We later met with another specialist for a consultation. Being that we were at Duke, we also met with their respective interns. Between all four of those intelligent people, we heard the same thing over and over, “We don’t know what’s in your brain.” I will fight the urge to make jokes here.
Since I was not present at the appointment on Tuesday, I learned some things today. Such as: in August, Gwen’s brain scan had some spots and no one mentioned anything. Apparently, if any of us got our brains scanned right now, we could have spots show up, too. This week, what alarmed the doctors was that there were about a dozen spots and some were in the same exact location as before AND had shown growth. However, if these were indeed cancerous, the expectation would be that they would react to the contrast in the MRI, and they didn’t.
It was the opinion of all four of the people we saw today that Gwen should wait 4-6 weeks, get scanned again, and then reevaluate. Treatment options for “If these are metastases…” were discussed (biopsy/radiation, etc). Also, the brain fluids from the spinal tap will be tested for everything under the sun to try to explain the spots. They said that the spots could turn out to be nothing…
Meanwhile, in between appointments today, Gwen received a call from Dr. G’s nurse (Duke-Raleigh) who had been in contact with Dr. Shaw in Boston. (Recall, she is a ROS-1 specialist). Dr. Shaw wants to see Gwen in Boston NEXT WEEK. (See previous note about teachers and “multiple absences” and you will understand that this gave Gwen a bit of a momentary panic attack).
Gwen was able to talk to Dr. G. tonight on the phone to discuss the Duke appointments as well as the idea of going to Boston. Dr. G. and Dr. Shaw DO NOT want to wait 4-6 weeks. According to Dr. Shaw, spots in the brain that do not react to contrast is something that she sees frequently with the ROS-1 patients (this is actually a question that Gwen tried to ask the doctors at Duke – could this be a different kind of reaction because of her type of cancer. They didn’t think so, but it seems that Dr. Shaw does, and she’s the ROS-1 expert). Dr. G. REALLY wants to get Gwen up there ASAP – she doesn’t want to take chances with Gwen’s brain. Apparently, Dr. Shaw does think that these spots are concerning.
There is a drug that Dr. Shaw can get Gwen hooked up with. Gwen really doesn’t want to leave Xalkori due to the fact that her body hasn’t resisted it yet (it is still working for her lungs), but this other drug has been shown to break through the blood-brain barrier. This course of treatment would also likely mean multiple trips to Boston.
We left the appointments today thinking we had one game plan, and then within a matter of hours, it was thrown out the window!
Gwen knows that, obviously, her health is the most important thing, but we teachers are a warped breed. Sometimes our first thought isn’t “I have to take care of me,” it’s “Oh, how am I going to be absent that much and make all those sub plans and grade all those papers and how will the kids ever be ready for the State Exam??” It is irrational, exhausting, and very, very stressful.
If you are the praying type, please pray for her to find peace with her chosen course of treatment, which ever that may be, and to find peace with putting her health first! And of course pray for her health and the wisdom of her doctors. 🙂
Well, our updates skipped from Thanksgiving to Valentine’s Day, so I hope you all had a great holiday season and the New Year is off to a nice start. Gwen, Justin, and Callie took a lovely Christmas cruise with Justin’s side of the family and returned in time to spend Christmas day with the rest of us back here in reality. A few of us got to spend the holiday with a lovely stomach flu, so that was fun. Other than that, the holiday break was quite nice!
Gwen had her latest appointment with Dr. Garst today. The official report is that her lung “cloud” shows no significant change from November, however when you look at the scans, visually it appears improved! Her bone scan results were deemed “Stable.”
The results of her brain MRI showed “spots of unknown significance.” My response was, “WHAT??”
So, apparently there are some spots showing up in her brain… something on top and something in the back. When you look at the scan, these spots appear like cancer spots would appear on a scan, HOWEVER, these spots are not acting like cancer in that they did not absorb the contrast that Gwen took for the MRI like cancer spots normally do. Of course, like much of this journey, the doctor has never seen anything like it.
Thankfully, things are going to kick into high gear to try to figure out what is going on and hence what the next steps will be moving forward. On Thursday, Gwen will have a spinal tap to test her brain fluids. Friday, she has two appointments set up with two different “brain doctors” at Big Duke in Durham. Her scans will also be sent up to Dr. Shaw in Boston for further consultation. I’m not sure how much information we will get this week, but we will keep you posted!
Please keep Gwen in your prayers. Please also add, if you will, our cousin who had surgery last week to remove a tumor in her lung. Boo lung cancer!
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
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!
Today was the big day; the day of the LUNGe Forward 5K. Thank you one and all for your kind support and donations large and small. Team GwenStrong was recognized as the fourth largest as well as the 8th in donations. With your kindness and generosity, Gwen’s team surpassed her goal of $3000 by $1610!
And some of our runners took home medals again this year… Gwen (survivor racer), Justin (#1 in age group), Austin (#1 in age group), and Gennilee (#2 in age group). Callie and Lachlen got medals in the kids dash, too. Way to represent!
Here’s a mess of pics from the day. First was the introduction of the survivors. Gwen led the moment of silence. She is the one with the microphone.
Next was the mile run. We sent Lachlen off by himself and then got worried when people were finishing and he wasn’t showing up, so Kevin went and met up with him. It turned out he was right around the corner and said that “it worked out great” that we sent him alone because he made a buddy. (Some older guy).
And then they were off!
Stroller brigade: Penny and Emma, Mom and Dad with Callie
Dr. Garst on the right
And just a quick 22ish minutes later, Justin and Austin were back. Following not too far behind was one of our pastors, Bruce.
Justin overtaking this hand-holding couple at the finish.
Pastor Bruce praising the Lord he made it to the end!
Here is Gwen and Friend Kristen (not to be confused with Sister Kristen). In the first pic Gwen is waving to us.
Next came Will, Kenlee, Kevin, my parents, and a whole bunch of others whom I did not photograph (my apologies).
The last race of the day was a kids’ dash in which Callie and Lachlen participated.
Remember in my last post when I mentioned the ROS-1 specialist in Boston, Dr. Shaw? Well, Gwen got herself an appointment with her and went up to Boston. We just so happen to have a cousin up there (shout out to Liza!), so Gwen had free lodging and a chauffeur for her trip as well. Mom made the little hop from NY over to Boston to attend the appointment.
Here are the main takeaways that Mom and Gwen shared: Dr. Shaw is a genius, there are a lot of clinical trials on the horizon, cancer is complicated, Dr. Shaw and Dr. Garst will be collaborating (awesome!), Gwen will stay on the current course of treatment for now (Xalkori).
Okay, now the longer version. Remember that pesky lung cloud? On our last episode, the lung cloud was shrinking much to the excitement of the studio audience and the viewers at home. Well, it is Dr. Shaw’s opinion that the cloud of cells appear to be shrinking because they are really just becoming more concentrated and that their powers combined will become another tumor.
Now, before you get too worked up about this latest news, this is supposed to be not too upsetting… this is weird, I know.It is Dr. Shaw’s belief that Gwen’s body is resisting the Xalkori. She says that this is what happens when the resistance begins; a very slow progression (the cloud has been present since February). If a tumor forms, then it can be biopsied. If it can be biopsied, then they can test it to determine which mutation is present and therefore which medication can be used next.
So, Allisen, why did you say that she is going to stay ON the Xalkori two paragraphs ago? Gwen still feels fine and can breathe fine, so for now, it appears that the only part of her body effected is her lung. I guess we are going to hope for a tumor growth?? so they can biopsy it to help determine the second line treatment… so bizarre. Eventually, if needed, chemo will still be an option since she responded well to that the first time.
In the meantime, please consider joining Gwen’s LUNGe Forward 5K team, GwenStrong, even if you only participate from your couch. She’s harassed many of us on Facebook about it, already… The 5K takes place on September 25!
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!