Cancer Sucks/ We Luv Chris

FRIDAY, AUGUST 30th, 2019 The last two days have been quite eventful. We found out Wednesday that both the Revlimid (oral chemo drug) and CAR-T Therapy were approved by insurance; however, although approved, there were several items that were still preventing forward progress.        1. The co-pay for the Revlimid still needed to be determined and co-pay assistance needed to b discussed.        2. The hospital needs an approval letter for CAR-T therapy; in addition, apheresis for CAR-T is booked until  September 12th.  So even if everything is in place, Chris will  have to wait until the 12th to begin the harvesting process. The Revlimid co-pay was resolved today, and Chris will begin the drug upon it's arrival at our house tomorrow.  He will have to temporarily discontinue the drug 5 days before getting his apheresis. Yesterday (Thursday) evening, Chris began having pretty severe abdominal pain.  It had been worsening throughout the day, and grew to a point that was no l

TUESDAY, AUGUST 27th, 2019 Today Chris had a lab draw and we met with Dr. Shah to discuss the next steps moving forward. Chris's labs looked good except for his LDH which is up from 241 to 368. Chris will be starting CAR-T therapy as soon as our insurance approves it. Once it is approved, Chris will have an appointment at the hospital for apheresis (collecting the T-cells). This will take several hours. The T-cells will then be shipped off to be harvested, which will take approximately 21 days. Once they're back, Chris will undergo 3 days of chemotherapy (Cytoxan and Fludarabine) before getting his T-cells back. He'll then be monitored as an inpatient for 14 days. Chris will have another PET scan 28 days after receiving his harvested T-cells to re-assess the state of his lymphoma. In the meantime. Chris will be put on an oral chemo drug to help keep his lymphoma under control. He received a bolus of Rituxan today, and he will continue to receive it once weekly until

SATURDAY, AUGUST 24th Sorry for the lack of posts lately. We've had a very busy month of August. Chris had the second component of his new chemo regimen on the 13th. Since then Chris was doing relatively well. All of his labs were normal and nothing if the ordinary to report. A few days ago, Chris started having abdominal pain similar to what he experienced prior to his last round of chemo. At his appointment yesterday, he discussed the pain with Dr. Shah's NP, and they ordered an abdominal CT. Chris received the results of his CT via MyChart, and it said that while a lot of his original areas of lymphoma continue to look better, be has two new areas of lymphoma, and the previously new areas have doubled in size. We will be meeting with Dr. Shah on Tuesday if next week, but we have a feeling Chris will be forgoing the second round of the new chemo regimen and will be starting CAR-T therapy sooner than we originally anticipated. I will update again after we meet with

TUESDAY, AUGUST 6th, 2019 Chris had his follow up with the ocular oncologist yesterday. After getting several different types of pictures taken, the oncologist was confident that the spots on Chris's left retina were cotton wool spots and not lymphoma.  "Cotton wool spots are small yellowish-white deposits (resembling cotton fluffs) in the retina. They represent swelling of the retinal nerve fibers. This swelling usually occurs because the blood supply to that area has been impaired and the decreased blood flow has injured the nerve fibers in that location." ( https://nei.nih.gov/faqs/retina-cotton-wool-spots ) As a result of yesterday's meeting with the ocular oncologist, Dr. Shah feels confident that Chris does not have lymphoma in his CSF or brain; as such, Chris started the Gemcitabine/ Dexamethasone/ Cisplatin chemotherapy R-GDP) regimen today.  This chemo regimen does not cross the blood brain barrier typically, but Chris is receiving an increased dose of Ri

THURSDAY AUGUST 1st, 2019 Chris had his spinal tap today. Unfortunately, it took over an hour for the procedure. (The first two only took about 25 minutes). They were only able to get approx. 2ml of CSF out, and the NP was unable to deliver any chemo into the spinal column.   We're hoping they will be able to get what they need from the small sample, but it sounds like the chemo regimen will be heavily based on the findings Monday with the ocular oncologist. What's even more unfortunate is that Chris is in considerably more discomfort and pain than any of his previous LP's. We're hoping the pain will subside sooner than later.  I'll update again Monday after Chris's appointment.  V