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 Almost Time to LUNGe Forward!

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!”

Or

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?

The 5F

My apologies to our faithful followers! I have been hearing from several of you lately because it has been awhile since the last blog post. There just wasn’t much to report! Gwen was still pretty much dealing with double side effects from chemo and starting Xalkori and was tired. She is still teaching full time and coaching track!

Today, we can update on a few things! Gwen and Justin just had high school spring break.  They went to Disney and spent Easter there with his parents. Our Mom went along, too. I hear there was a parkwide egg hunt for 44 eggs and the Orilios found 3. I’d say that was pretty good!

The trip went well until they were on their way home and wound up about 10 cars back from a single car accident with a fatality. They feel blessed to have been 10 cars back and not closer to what could have been much worse.

Gwen had an appointment yesterday. Things are going well. This was the first appointment since she started the Xalkori, so she took some time to find out how the medicine works.  Basically, we all have cancer cells in our bodies and our immune systems attack those cells.  When you have cancer it is because the cancer cells have gone haywire and our immune system can’t keep up. Xalkori targets those mutant cells and stops them from dividing and growing. It will essentially go after the weakest first and then hopefully go after the more concentrated masses. Somehow there was some miscommunication right after Gwen’s lung surgery and she didn’t get the memo that she still has a mass in her lung that was not removable. I think she was still too doped up on drugs to remember that part… But, she kinda had a lot of other information being thrown at her, like “you have cancer, and it’s not good,” so maybe she just missed it.

Dinner out because it was Friday

This time, when Doc G referenced the chemo, she made it sound like it had done it’s job very well – that is different than the impression we got last month when it seemed like there’d only been a ho-hum response.  She said there was only “a little disease present.” It sounds as though the thinking right now is that they will shrink this lung mass as much as possible, but they will likely radiate it. Doc sounded hopeful that with radiation, they may be able to kill it all and get Gwen into remission. I am not sure of the time line on that.

Gwen goes back in one week for a CT scan to check to see if Xalkori is doing its job, and they will do an MRI of her brain – which will be her first brain check since the fall. She also has a follow-up with the ocular oncologist in a week and a half, so stay tuned!

Finally, today was the Gwen 5F; a thank you brunch for the organizers of the Orilio 5K. The 5Fs were for Gwen’s Favorite Fabulous Foods Fun Feast. There were a lot of foods that one would consider brunch items, and then I guess what made it “not breakfast” was that Gwen wanted delicious treats such as chocolate cherry cake… I wanted to take pictures of the brunch so I could add them to the blog, but alas, I was so busy eating I forgot until most everyone had left which is what happens when one sister who is on lots of medication is in charge of a blog about her sister who is also on drugs. And there were mimosas. 

Again, my apologies to the attendees. You are the reason for the brunch. We can’t thank you enough for everything you did, and continue to do, for Gwen. I show my thanks by forgetting to take your picture. But here’s some shots I did get once I remembered my objective!

Post-Round 3

For our readers who don’t know, Gwen and I are both high school math teachers. This weekend, we had the pleasure of celebrating the Pi day of the century (3.14.15), and Gwen loves a reason to celebrate!

We gathered at her house for all kinds of pies.

We were also joined by our Lake George friends Paul, Barb, and Kevin as they were passing through the state heading back North after a week’s vacation.

As fun as the day was, it was the first time I had witnessed the fact that the chemo effects are adding up, my friends! Thankfully, Gwen is not having the allergic reactions she had after round 1, but she is seeing that the chemo is taking a toll on her body. She had also had her Xgeva shot for her bones. This is the second time she has had the shot. The first time, she was sore for one day, but this time she was sore for several days.

And then there’s the fact that she’s a teacher.  We’re in a weird profession, and those of you who aren’t teachers just won’t get it. This profession takes a toll on the healthiest person’s body! Gwen had missed 3 straight class periods for one of her classes; 2 for doctor appointments and 1 for chemo, so she worked the rest of the week following Monday’s chemo because she felt she had to. Needless to say, she was pretty wiped out this weekend. You may be saying, “Gwen! That’s crazy! You should have stayed home! You just had chemo!” I know I said that to her on Saturday… But she’s a teacher. She feels an obligation to those kids in her fourth period class who are already behind because of 8 snow days and have an AP exam to take in May! She can’t miss that many days in a row! I know, Gwen, I get it. I worked a crazy amount more than I should have back in 2011-2012…

Monday (yesterday) she came home to a gift on her porch – Xalkori; her targeted treatment pill for the ROS-1 mutation. So, she began taking that last night!

Pro: we should see results quicker than the chemo was producing. Let’s all pray for that!

Con: Gwen is currently experiencing side effects of the chemo she got one week ago AND the side effects of this new drug.  Her body is going through the wringer! She is a bit tired and a bit frustrated with the multiple side effects. Hopefully her body will adjust soon.  She will be meeting with Doc G again on Monday.

By the way, have you ever seen a more perfectly shaped head?

Gwen loves hearing from people, so please keep the well-wishes coming as they help keep her spirits up!

gwenstrong.com

http://www.lungcancerinitiativenc.org/

 

Chemo and eyes!

Gwen has already had a busy week, and it’s only Tuesday! She had round 3 of chemo yesterday. The process went more smoothly this time. She got benedryl via a pill this time, and she felt much better. She was in a new room as the hospital has expanded their infusion area. She said it was quieter because there are no TVs in the new room. She occupied herself by chatting with “Helen” and mom, using her tablet, and doing some thank you note writing with mom as her helper until Gwen fired her for being too slow.

She went straight from chemo to track practice, of course! The first meet is tomorrow, and she really wanted to help her jumpers! Such dedication. Mom got to be an assistant at practice, too, as she was on Callie duty.

Today, she had an appointment with the eye doc at Duke, Dr. M. Is last name is too difficult for even his colleagues to pronounce, so they all refer to him as Dr. M. Gwen was pleased that he had heard the news that she was mutated and feels it must mean her lung doctor was really excited that the mutation had been identified! I think it is awesome that they are in such good communication with each other.

The following synopsis of the appointment was written by my guest blogger who has no idea that she is guest blogging, our mother who was at the appointment:

Gwen saw her ocular oncologist today.  Today’s eye sonogram showed that the mass is wider, but not as thick, it is less elevated, has less fluid in it, and its
rate of growth has slowed. Overall, the doctor thought the chemo was doing some good-he used the word “encouraging”.  He is leaning toward doing a cold laser treatment of the eye mass which will clot blood in the blood vessels and shut off the blood supply to the mass. This procedure would not cause any further vision issues. He just needs to confer with the medical oncologist to see if the targeted pill treatment will arrive soon enough that it would make sense to wait and let the pill do its work (because it has passed the blood/brain barrier in others and therefore should help the eye)and leave the laser treatment in our back pocket if needed. The decision should be made in the next day or two, so stay tuned!

I think “in our back pocket” has been the most frequently used phrase throughout this process. These docs like options and like them kept in pockets!

Thanks, Mom, for emailing this info this afternoon so I didn’t have to type it all – it is already past my bedtime. And thanks for being Gwen’s assistant even if you are slow at writing.

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.

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. 😦

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.

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/

Finally, we have a mutation!

So, last night Gwen got a call from her oncologist wishing her luck for the 5K (more on that later) and to let her know that she had received some positive test results. Gwen has non-small cell lung cancer (NSCLC) which originated in the glandular tissue. This is called adenocarcinoma. There are several molecular mutations that they have tested Gwen for, and we finally have a winner! She’s positive for the ROS-1 mutation, or as cousin Sarah said, “So she’s like one of the X-Men?”

ROS-1 mutations make up about 1% of cases of NSCLC adenocarcinomas In young, non-smokers. Of course here young means average age of 50! Gwen and I are talented when it comes to getting diseases before we should. We had to find something to be talented at.

For more info on the ROS-1 mutation visit this site:

http://www.cancercommons.org/patients-caregivers/lung-cancer/ros1/

So what?

Glad you asked. ROS 1 is one of the few mutations that has an FDA approved drug to treat the cancer. Right now, since she already started chemo, she will continue that course of treatment. She has a scan in 2 weeks to make sure the chemo is working. If so, she will stay the course, if not, she can use this pill. She essentially has two weapons in her arsenal.

Gwen’s doctor, Doctor G, wants you to know that if you are ever diagnosed with NSCLC, you need to request molecular mutation testing. It is new enough that not all docs do it automatically. Also, lung cancer screening is now covered by Medicaid.

We had a great day at the 5K today, but that deserves its own post, and I am falling asleep as I type, so that one will have to wait until tomorrow, friends!

Chemo Session 2

Sunday, we had the opportunity to get together with our New York visitors and family to eat a bunch of food. The request was for southern food, so we had bbq, hushpuppies, slaw, and of course, ice cream. We also took the opportunity to trim up the bangs on Gwen’s wig… she was really bothered that she was having to part them like curtains. Best part of the evening was when I said, “Ok, let me grab my scissors!” and she said, “Let me grab my hair!”

Gwen had her second round with chemo yesterday. She got hooked up around 10:30. This time, her IV cocktail included some benadryl which made her very, very nauseous. In retrospect, she feels like if she had slept through it, she would have been fine, but her “guidance counselor,” whom I call Helen, was there talking to her. Oh, Helen, sweet Helen.

Once they got some nausea meds in her, the rest went smoothly. She is allowed one guest in the chemo receiving room. Yesterday, she had backup guests that took turns: Justin, Mom, sister Kristen, and friend Kristen.

Word has it that friend Kristen and Mom had the corner on the waiting room puzzle. They told a kid that he could help them, but we wonder if he was really able to do any helping…

We are also finding amusement in the fact that the New Yorkers came down here for winter break and it has snowed. At least we transplanted southerners can spend more time with them because school is closed!

Gwen is enjoying spending time with her New York visitors and wishes we were all snowed in at the same house… not sure the rest of us wish that… As of this morning, she has reportedly lost all of her hair and feels a bit better now. Before, she still had some on the sides and felt as though she looked like she had male pattern baldness.

Now, let’s hope this snow melts before the 5K!!

Visit: http://www.gwenstrong.com

Valentine’s Day

Gwen starts round 2 on Monday. I think I have now caught up to present time.

Being that this is Valentine’s Day weekend, I think it is appropriate to take time to recognize the outpouring of love, support, and generosity shown to our whole family throughout the past two months. We cannot even begin to thank everyone adequately! The notes, prayers, donations, food, phone calls, texts, and talks have been so appreciated.

Our brother’s wedding in October.

We are overwhelmed at the response to the 5K happening next weekend and are so thankful to those participating and especially to Gwen’s colleagues who are putting this together for her. One of her first questions in the doctor’s office post-surgery was about cost. She was told not to worry about it and to focus on staying as healthy as possible so she could fight this disease and keep well while we basically wait for science to catch up. How could she not worry about cost? I personally am overwhelmed by the generosity shown to my sister – I can only imagine how she feels. Thank you for helping to ease her worries on that front so she can focus her energy!

For more info on the 5K or to donate to the cause, please visit: www.gwenstrong.com

Chemo starts

Chemo round 1. It was a l o n g day. She went in around 8:30 and left around 5:30. Some of that time was spent with the doctor, and she is participating in a clinical trial, so she spent time with the trial nurses, too. The trial is nothing experimental, they are just comparing different FDA approved treatments against each other. She is getting chemo with a blood vessel blocker.

Things went well, at first… About 4 days after receiving her first dose of chemo (Super Bowl  weekend time, I believe) she started having an allergic reaction to something from her chemo cocktail. She broke out in a rash all over the place. She had an appointment the Monday after the big game. The doctor was impressed by her rash. Go big or go home!

They hooked her up to a Benedryl-type IV, prescribed her every allergy med under the sun, and put her on ‘roids. The one positive that came out of that was that she gained some weight – she had lost a bunch in the time period between her eye biopsy and chemo.

That Friday, she went back for a rash check, and as a bonus, they had test results! Things are looking good for her to have a possible ROS-1 mutation, which make up <1% of lung cancers. Of course we have to wait for more tests to come back, so stay tuned!