Let’s Try Something New!

Thank you to everyone who has asked about Gwen. We all appreciate your support and prayers so much!

This spring, Gwen received a white ribbon – part of the White Ribbon Project . She was super excited to receive this and help support this project which aims to reduce the stigma of lung cancer.

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Gwen, Justin, and Callie have been traveling and making their way up north with an ultimate goal of reaching Boston. And now they are stuck with us at camp.

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As mentioned in the previous post, Gwen has been approved for a single-patient clinical trial of Repotrectinib which is the first drug targeted to the ROS-1 and G2032R mutations. We are all very excited that she has been approved to try this treatment, and she received her first dose on July 9th!

Gwen had been feeling some soreness in her hips but has already begun feeling less sore since starting Repotrectinib. Unfortunately she is feeling some fatigue and has experienced some change in her sense of taste- especially with sweets. She said the bite of ice cream she had tonight was “gross” which is practically unfathomable to this family! Needless to say, she is pretty bummed out about that.

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Before ice cream was gross.

Gwen will return to Boston on July 23rd for more blood work and to get more medication. The plan will be to increase the dose from one a day to two a day. She will get scans again in late August.

May in Boston

Gwen had another appointment in Boston yesterday. We took advantage of the appointment to have a girls’ weekend with mom, sister Kristen, Gwen, and I. We had a great time together and the weather was amazing! We crammed in as much walking as I could handle, met up with our cousin Lee on Sunday, and managed not to get lost.

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Some background/timeline information to catch us all up leading into the appointment:

-November 2020: blood biopsy performed with inconclusive results

-February 2021: routine scans showed new growth

-April: repeat blood biopsy showed positive for a mutation

-May: scans showed additional lesions especially on the spinal column, a spot on her shoulder bone that is growing, and that the few spots that were radiated seemed smaller. The non-bone areas were stable (abdomen, lungs, brain).

The blood biopsy revealed what is called a ROS-1 G2032R resistance mutation. Bad news: This basically means the cancer cells are outsmarting the medication. Good news: There is a new medication in phase 2 of clinical trials that is specifically targeted to the ROS-1 G2032R mutation. This is the first ROS-1 specific drug. Bad news: Gwen does not qualify for the trial due to having been on 2 other targeted medications and having had some chemo in the past.

Going into the appointment yesterday, the hope was to find a way to get the medication anyway. We were instructed to cry if necessary. Fortunately, it did not come to that as the doctors in Boston and Raleigh decided that this new medication, Repotrectinib, was still a good option for Gwen.

It will take a few weeks to jump through the paperwork hoops, which left Gwen still feeling anxious, but for now we know her current medication is still doing ok controlling the cancer in the other parts of her body.

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