Patient Journey Continued
Insurance denied our PET/CT scan request. I wasn't able to get a clear answer from the insurance on why it was denied, but was told that it was limited to 3 scans. This didn't make sense because we had done more than 3 scans in 2023 without any issues. Insurance said justification would need to be provided for additional PET scans since coverage for multiple CT scans were approved in December 2023.
I sent Dr. Gordan a MyChart message for guidance and he said that continuing with a CT scan with contrast would be fine for my mom's March scan. Dr. Gordan said that if we see any red flags on the CT scan we would follow up with a PET scan and provide justification to the insurance.
CT Scan Chest, Abdomen, Pelvis with Contrast Result
"IMPRESSION:
1. No findings of disease progression in the chest, abdomen, or pelvis."
Met with Dr. Gordan to discuss latest CT Scan result. Latest result still showed no signs of disease. Overall my mom was doing well, but she had some abdominal pain still that she managed with oxycodone. Since completing chemotherapy in July, her memory and cognitive abilities had noticeably improved.
We told Dr. Gordan that we were planning on move to Ohio later that summer to be closer to my brother and his family. I told him that I wanted my mom to get treated at the James Cancer Center at Ohio State. Cleveland Clinic was too far from where we were moving and wasn't an option. The James Cancer Center was closer, but still about 50 minutes from where we were moving to.
Dr. Gordan said he had colleagues at Ohio State and would see who they would recommend as a GI medical oncologist to manage my mom.
The following day (3/26/23) Dr. Gordan sent me a MyChart message saying that his colleague at Ohio State recommended Dr. Ashish Manne as an oncologist with expertise in gallbladder cancer. Dr. Gordan also placed a referral for to him for my mom.
We reviewed the latest CT scan with Dr. Gordan which still showed no signs of residual disease. Dr. Gordan recommended to continue durvalumab monotherapy as maintenance since my mom was tolerating it well.
This was our last meeting with Dr. Gordan before moving to Ohio later that month. My mom and I thanked Dr. Gordan for all his help, support, and expertise throughout my mom's journey to date. I didn't go into detail in this timeline, but I really appreciated being about to have scientific discussions with Dr. Gordan about mechanisms of action, potential resistance mechanisms, clinical trial data, and more. My mom felt a lot more comfortable going through her treatments knowing that Dr. Gordan was managing her care. We couldn't thank him enough for his help and guidance.
On 7/25/24 my mom went in for her last durvalumab infusion at Sierra Hematology and Oncology before we moved to Ohio. We saw Dr. Rajabi one last time as well. Similar to Dr. Gordan we thanked Dr. Rajabi for all his help, support, and guidance. I appreciated Dr. Rajabi's willingness to collaborate and placing the referral to UCSF in order to ensure my mom was receiving the best care possible. My mom had come a long way from when we first saw Dr. Rajabi. Her weight at this point was 158.2 lbs, she was eating well, and fairly active. We thanked Dr. Rajabi once again for all his help. He wished my mom the best with her care at Ohio State.
Moving required a fair amount of coordination for my mom's care. I needed to get her set up with a new insurance plan in Ohio that Ohio State and other local medical centers were in network for. Ohio State had a group called Destination Medicine that helped me coordinate the transition. I also told Ohio State that my mom was part of the AZ&Me program with AstraZeneca and that the vials would need to be shipped to Ohio State instead of Sierra moving forward. We were able to get everything coordinated and my mom scheduled for an appointment with Dr. Ashish Manne on August 14th, 2024.
It was great meeting Dr. Manne. Since the scans were looking good the plan for my mom was to stay the course and continue to take durvalumab every 4 weeks until we get to February 2025. Dr. Manne said we would discuss what to do moving forward around that time.
Dr. Manne said he did want to perform a PET/CT scan in October. I told him about the insurance issue we had while in California, but he said not to worry about it and that it shouldn't be an issue at OSU.
My mom was then scheduled for her first durvalumab infusion on 8/22/24.
This was a very different experience than what we were used to at Sierra Hematology & Oncology. Sierra was a smaller clinic with a single floor, while the James Martha Morehouse building was multistory.
At OSU we checked in at the desk first, my mom got her labs drawn on the first floor where they accessed her port, we went to the 7th floor to meet with the nurse practitioner & oncologist, & then head up to the 11th floor for the infusion.
The infusion rooms were all private, single rooms with recliners for the patients and a chair for family members. They also had a small complimentary menu for patients and caregiver to select beverages and food for free which was very nice.
Staff throughout the entire building were very friendly, supportive, and helpful.
On 9/16/25 I got a MyChart alert for a $2,486.10 bill due from Ohio State University for the copay associated with my mom's durvalumab treatment on 8/22/24.
This caught me off guard because I had told Ohio State that my mom was part of the AZ&Me program and gets the drug for free from AstraZeneca. I found out Ohio State has a policy that if a patient has insurance the insurance has to be billed and that we couldn't use the AZ&Me program at OSU for my mom. Patients that are on Medicare, such as in my mom's case, can still qualify for the AZ&Me program if they meet the income requirements. Unfortunately this was not an option with Ohio State due to their policy.
Billing put me in contact with the Financial Assistance group. I was made aware that although we could not use the AZ&Me program we could try to apply for copay assistance funds. I provided my mom's information and luckily The Assistance Fund was open and accepting applications for their Biliary Tract Cancer copay assistance program. My mom's application was accepted and within two weeks the $2,486.10 bill was removed from her account and covered by The Assistance Fund.
"IMPRESSION: Overall nonspecific findings
1. Mildly avid upper right paratracheal node associated with slight calcification, likely related to granulomatous disease, attention at follow-up advised. Few other calcified nonavid nodes in the mediastinal and hilar, likely granulomatous.
2. Status post cholecystectomy and partial hepatectomy as well as partial bowel resection. Few tiny nonavid nodes in the surgical bed in the upper abdomen as well as upper retroperitoneal, most likely inflammatory.
3. Ill-defined nonavid densities in the right lung, appear inflammatory.
4. No suspicious FDG avid lesions noted."
Discussed PET/CT scan result with Dr. Manne. I asked about the upper right paratracheal node that was slightly avid, but Dr. Manne said it wasn't likely due to cancer and said that it's most likely related to granulomatous disease. Basically that it was a collection of immune cells from an inflammatory response. Overall he said not to worry about it, but that he would keep a close eye on it in future scans. After the appointment with Dr. Manne my mom continued with her durvalumab infusion that day.
The Assistance Fund opened reenrollement for their biliary tract cancer copay assistance program from 11/6/24 to 11/22/24. They had sent me an email on 10/01/24 letting me know that reenrollment would take place starting 11/6/24. I submitted an application for my mom for reenrollment as soon as their portal opened up on 11/6/24.
On 12/2/24 I received an email notifying me at my mom's application was accepted. The Assistance Fund would continue to help with her copay associated with her durvalumab (Imfinzi) immunotherapy treatment through 12/31/25.
"IMPRESSION: Overall stable exam with nonspecific findings
1. Mildly avid upper right paratracheal node associated with slight calcification, likely related to granulomatous disease, attention at follow-up advised. Few other calcified nonavid nodes in the mediastinal and hilar, likely granulomatous.
2. Status post cholecystectomy and partial hepatectomy as well as partial bowel resection. Few tiny nonavid nodes in the surgical bed in the upper abdomen as well as upper retroperitoneal, most likely inflammatory.
3. Ill-defined nonavid densities in the right lung, again appear inflammatory.
4. No suspicious FDG avid lesions noted."
My mom had an appointment for her next durvalumab infusion on 1/15/25 and we met with Dr. Manne that day as well. We discussed the fact that next month would be the two year mark from when my mom first started durvalumab. Dr. Manne said that we don't have good data on gallbladder cancer patient for when to stop checkpoint inhibitor immunotherapy. My mom was still tolerating it well, but was starting to have fatigue issues. Collectively we decided that we would keep my mom on durvalumab for as long as she continues to tolerate it. My mom also did not want to stop treatment and was happy that we had an option to continue with the immunotherapy infusions.
I also asked Dr. Manne on his thoughts on performing a Minimal Residual Disease (MRD) assay such as Signatera to check if there are still cancer cells in her blood. Dr. Manne said the issue with using Signatera is that it wouldn't inform any treatment decisions. A negative result wouldn't mean we would stop treatment and even with a Signatera positive result we would still keep my mom on durvalumab until the PET/CT scan shows progression. Although I was curious to see the data from an MRD assay I didn't want to scare my mom if we did get a positive result so I agreed to not perform the assay. Instead Dr. Manne said that if my mom progresses we would run a FoundationOne Liquid Biopsy again to check for any new mutations since that would be useful to inform treatment decisions.
February 2025 will be the two year mark of my mom being on durvalumab (Imfinzi). Overall my mom continues to do well and just has some mild fatigue. She also still has neuropathy issues in three of her right hand finger, but the gabapentin helps her a lot.
I will continue to provide updates and PET/CT scan results throughout the year as my mom continues to take durvalumab every 4 weeks at the Ohio State Wexner Medical Center.