Gwen Goes To Boston

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.

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This is Gwen and sister Kristen. (A pic with Liza would have been appropriate here, but I didn’t have one with just the two of them.) 

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!

 

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Last year’s GwenStrong team; Dr. G in the blue raincoat.

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.

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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.

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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?”

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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!

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Gwen and Lachlen tubing real S L O W like.

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

National Cancer Survivors Day…

…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.

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Don’t be jealous of my mad food photography skillz (I’m pretty terrible at this part of blogging). I remembered to take photos AFTER we finished eating…

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!

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A very close-up photo of Gwen. Hi, Gwen!

(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.

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Here he is speaking to us. His “speech” is written on an envelope, BTW. Awesome.

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.

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Gwen and fellow survivors/fighters/warriors. Take in their faces, people!

And I would be remiss if I didn’t mention little Callie’s third birthday which was this past week.

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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…

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I may not be able to take pics of stationary objects like, say, food. But I nailed this one. 

Keep jumping, my friends. And steer clear of rogue giraffes.

 

Things Are a Bit Hazy

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.10547172_10152343012563562_7491346631567254290_o

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!

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We’re really talented at jumping- in the summer- with Tess.

Please, as always, keep her in your prayers, and thank you for all the love and support!

Happy birthday to Callie in a couple of weeks!

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Last year’s birthday photo!

 

 

Another Eye Update

‘Tis been a long time since we’ve updated the good people who follow Gwen’s progress, and actually, Gwen failed to even update me after her last appointment! She has become so accustomed to good news that she kept forgetting to tell me about her last trip to the eye doctor. This was after we even spent three days together on a little Spring Break trip! How great is that??

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Look at all that hair!

So she and I have finally spoken about her eyes. Her appointment was back on March 22nd. She was scheduled to see one doctor, but then her main guy, Dr. M. came in. It turns out that he is leaving Duke and will be going to Stanford. He wanted to come see Gwen and say his goodbyes. They currently don’t have a replacement for him, but the current team will take good care of Gwen and keep Dr. M. informed of her case. He is rather pleased with how well her eye tumor has responded to the Xalkori, seeing as how many of these types of medications are not known to cross the blood-brain barrier and her tumor has quite obviously responded. (If you recall, there was talk really early on about possible radiation of the eye if the tumor didn’t respond). So apparently, “they” are reporting “their” findings about how her tumor has responded to the medication and her case is being used in medical land.

As we mentioned last time we reported on the tumor, it is still there, smaller than last time, and remnants of it likely will always be present. The analogy was made to Gwen that it was like a building that was knocked down – the pile of rubble is still there but there is no structure to it any more.

And here is the biggest shocker – no more eye checkups for 6 months!! Well, about 5 months from this blog update…

Thank you for continuing to keep Gwen in your thoughts and prayers – and I know you do because people ask me about her all the time (even my own Rheumatologist as well as my dentist and my dental hygienist who only see me twice a year). People are good and kind.

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God is good.

 

Latest Scan Results

Sorry I forgot to update after the scans… My bad. Chest and brain scans (we’re told) are good. We like to joke that her brain function has never been that awesome… Her pelvis was also screened. Her pancreas, liver, and such are also good.

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The left lung did have a “cloud” present. This, and a low white blood cell count seemed to be indicative of her getting over a virus. But Gwen has not been sick, so this is a bit confusing. The doctor is not concerned, but this has us looking forward to the next scans in three months so we can compare!

Gwen was asked if she’d be willing to donate blood to researchers looking for a way to do a blood test for the ROS-1 mutation. She said, “Of course!”

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This winter season of people getting sick and having perpetual coughs has also made Gwen ask people if they’ve been screened for Lung Cancer. So, remember, if that cough persists long after that cold is gone, perhaps it is time for a screening!