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: