Since the last update we have been back to the oncologist two times and had a telehealth appt. Every time we have gone to the oncologist his markers have continued to climb. Since, starting the Keytruda his breathing has gotten progressively worse and the week of the 18th I could hear wheezing. I called our local family practice nurse practitioner and asked for a chest x-ray to make sure he was not developing some sort of pneumonia. She thought it looked like there was fluid and like the cancer had spread with multiple spots to his lungs. We then had a telehealth appt with his oncologist and he ordered a ct scan for the next day and asked for the radiologist to call him asap with the results. Our oncologist called us that afternoon and said that they were not sure if there was more fluid or if it was the same as previous since he could not see the scan to compare them. He was also not sure if the spots were new cancer spots or not but, they could not rule out an infection in his lungs. We had an appt to see him Monday the 20th and he wanted us to see the thoracic surgeon while in Atlanta to see if fluid had to be drained.
During all of this we were also working on setting up an appt with the Dr. in Boca Raton that would do the chemo regimen that was tested on Jody's live cancer tissue. We found out that this dr. does not accept insurance at all and we would also have to pay 500-600 just for each appt including telehealth appts plus anything else that was needed. This has left us with the only option of going to the oncologist in New York that works with these lab results. We were able to schedule an appt with him on December 29th.
We went to Atlanta to meet with his current oncologist and thoracic surgeon on the 20th. On our way there they called to tell us his oncologist and nurse practitioner were out and that appt was now cancelled. We did meet with the thoracic surgeon and when he compared the last pet scan to the ct he just had done there is no more fluid in his chest than previous. He said the areas that they thought were new mets (cancer spots) look to be like pockets of fluid caused by Keytruda. We decided with Jody's appt the next week in New York we would not get his Keytruda treatment with as bad as he has been doing from it and wait to see how the new oncologist recommends we proceed.
December 28th we were packed, car loaded, and ready to head to the airport for our flight when the phone rang. It was one of the gals from the new oncologist office. She said she was not sure who had booked this appt but, it should not have been booked as the dr. was out on vacation. They were able to rebook us for this Monday the 4th. I hung up in a panic and spent the next 3 hours trying to get our hotel and flight cancelled and refunded. Both of which were prepaid. We were able to get the hotel cancelled and refunded. The flight however after many hours was credited but, not actually refunded. Instead of rebooking and paying the extra for new tickets this time we decided to drive to New York for the appt. We were not sure how it would go and very possibly would start treatment the same week. We can use our airline credit for a future flight as it looks like we will be travelling to New York a few times a month for treatment.
We left yesterday for New York. We drove to Maryland and stayed last night and will stay until Sunday with our oldest daughter Kel and her husband. We will make the last part of the trip Sunday afternoon. Monday we should have a plan in place and know if we will be here the rest of the week for his first treatment.
I will update this Monday evening to let everyone know if we are staying the week and what the plan is.