Brain News

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:

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Grading papers like champs…

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. 🙂

Thanks, everyone!

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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.

How’s The Chemo Doing

So in the weeks since round 2 of chemo, we have had many a snow day, so at least Gwen had some time to rest since school was out for 8 days in 2 weeks! She has been tired this go ’round, but she did not have an allergic reaction this time, so that was better. With no school, she also had some time to play.

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We are also pleased, and feel blessed, to announced the results of the combined fundraising efforts of all the 5K organizers, participants, donors, and supporters. So far, and I say so far because donations are still coming in, over $30,000 has been raised! Thank you, thank you, thank you to everyone who participated! Apparently even many of the other patients at the doctor’s office know of Gwen because they had heard about the 5K! Great job spreading the word, everyone! I just used a lot of exclamation points, but this is over 3x the goal and therefore exciting and a bit overwhelming!!!

Now onto some medical business. Gwen had her “halfway through chemo treatment” CT scan today. The purpose was to see if chemo is working. Good news was that all of the side effects thus far (with the exception of that allergic reaction) have been normal and she looks good. The CT scan has shown slight improvement in the lungs. The most noticeable was an airway that was previously pinched that we could see was now clearly open – which may explain why she isn’t complaining of shortness of breath anymore.

I must say, I was expecting more drama in terms of change. I guess the doc was, too, because the decision was made to order the targeted treatment drug for the ROS1 mutation – Xalkori. Whilst we await the insurance company approval for the drug, which could take 2-3 weeks, Gwen will go ahead and get round 3 of chemo on Monday. Doc G is also wanting an update on the eye tumor. Gwen’s vision has not been clear since the eye biopsy in December, and she can still see the tumor in her line of sight. She has an appointment in a week and a half, but Doc G is wanting that moved up.

So, benefits of being on Xalkori: drug should reach the brain (eye), we should see more drastic results since it is a targeted therapy, hair…

Downside, I guess, is the side effects, which are similar to chemo (except the hair bit), she’ll have to take 2 pills a day for an indeterminable amount of time, these drugs are all relatively new (this one was approved in 2011), and I think the worst part for Gwen is that she’ll be kicked off the clinical trial. She has become attached to the trial nurse, Donna, who always answers her phone when Gwen calls. 😦

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Once Gwen starts the drug, they will do another CT scan after 6 weeks. We also learned that Gwen is Doc G’s FIRST ROS1 patient! She is so special. This doctor leads up a lot of research on lung cancer and has been working with lung cancer patients for 24 years at Duke. She’s no small potatoes- this just shows how rare the ROS1 mutation is.

The FDA just 2 days ago approved another new treatment for a different lung cancer – an immunotherapy. Doc G reminds us that Gwen needs to stay strong and healthy because there are finally all these advancements being made in the lung cancer department, so we are waiting for science to develop more things that will help Gwen.

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Please continue to spread the word that this is not just a ssmoker’s disease! We want science to catch up to Gwen’s needs! Please visit Lung Cancer Initiative NC for more info:

http://www.lungcancerinitiativenc.org/

January 2, 2015

After the PET scan, Gwen and Justin met with a surgeon as it was determined that the lung spot was the best bet for a biopsy, but it wasn’t going to be a needle biopsy, they were going to go in and remove the tumor and she would have her lung collapsed, a chest tube, the whole 9 yards.

She came through the surgery alright, but even though we knew what the surgeon was going to tell us – I mean we HAD to know, right? – the conference with him was the worst 20 minutes I have ever experienced. The surgeon was amazing, but to hear him say, “it is definitely cancer, and it isn’t good,” was not what we were expecting to hear!

Skipping ahead some days, after biopsies were complete, Gwen, Justin, Mom, Dad, and I are huddled in the small exam room to hear that it is indeed lung cancer and it is stage 4. But she has no symptoms!!! This is crazy!! What in the world?!?

Gwen’s Busy Fall

To bring everyone quickly up to speed, let’s briefly go through Gwen’s fall/holiday season. She went in for her annual eye exam at which point a spot in her eye was discovered. She was sent to a couple of doctors, eventually winding up at Duke. On an unrelated note, she had been having migraines and saw a neurologist.

So, concurrently she wound up having a slew of tests done that basically said all was fine and that the eye spot was perhaps a mole and by the way, there is something on your lung that may be a residual upper respiratory infection or it could be tuberculosis? I think she got a shot for that.

So sometime around Thanksgiving she noticed that when she blinked she could see a ring, so they biopsied the eye. Lots of pain and multiple days later it was determined that she (as we all knew) was abnormal, but they ran out of cells to test before determining what was the deal with this eye spot that was still growing.

Sometime before Christmas they did a PET scan, the results of which we got on Christmas Eve – in addition to the eye thing, there were spots in the lung, on the spine, and on her hip that reacted to the scan.