Cancer war – new battle strategies
This past week’s medical journey
It has been a whirlwind of a week filled with anxious waiting, clinic visits most days, pain management, prayers, and the love of family.
It was one week ago today that Sam had a biopsy of one of the new disease sites. That procedure went exactly as planned and the tissue was sent to the BC Cancer lab for analysis – though we would not hear about the results until after the weekend.
Friday we were in clinic for a regular blood levels check and a quick exam. At the time, I was asked if Sam’s symptoms had changed and all I could say was ‘No, he seems to be doing well’. However, that would change over the following days as new pains mounted. I think of these as pain-spikes as they would come on quickly and cause changes in his pain management regime (i.e. drug doses were increased). We are thankful that we have such access to medical advice – though Sam and Tina deserve direct credit for sorting out the latest pain-spike.
The Finding and The Plan
During Tuesday’s visit Dr. Jacob let us all know about the results of the biopsy. The new disease sites are the same cancer (primarily characterized by its INI1 protein deletion). This information was critical to know in order to determine what treatments would be available for Sam. To be honest, the medical toolkit is getting low in options, but at least we still do have options:
Further chemotherapy is not an option. This cancer has become resistant and that line of therapy would put Sam’s new immune system at risk.
Radiation can be applied but is not a long term solution. We will use it to reduce the burden-of-disease on Sam. In particular it will be used on his T3-vertebrae to prevent potential growth at that site from impinging on Sam’s nerves.
A drug therapy for Sam has been approved. Nivolumab is used for immunotherapy, though special approval was needed to use it on a BMT recipient. In general terms, this drug will take-the-brakes off Sam’s immune system. Specifically, and as I understand it, this drug disables proteins on the cancer cells that allow them to remain invisible to the immune system. This is a very similar philosophy of treatment as the BMT – to enable the immune system, and in Sam’s case to support his new immune system, to identify and destroy the cancer.
The challenge is, until recently we have done the opposite, keeping the immune system brakes on so that the new immune system will not harm Sam’s healthy tissues. The medical team will be watching him closely. The goal: release the immune system to attack while watching for signs that the immune system does not harm Sam – it will be a fine balance.
There are risks but we are excited to move forward with this option/opportunity to destroy this disease. Sam is excited and these options and expected hospital times, depending on how he tolerates the treatment, could be less difficult than he had imagined.
Today Sam will start this new immunotherapy treatment. He will be in-hospital for several days to ensure there are no complications. Assuming there are none we will be back at the RMH early next week.
Tomorrow Sam will also make a trip to the BC Cancer Clinic at VGH to have a CT scan which will provide the radiation oncology team the data that they need to complete the planning of their treatments.
Faith, Hope and Love
I am so proud of my son. He is a young man full of courage and faith. He continues to face his own mortality choosing courage over fear. My favourite quotes come from him on a near daily basis: “I have an amazing life” or “I am so happy”. His challenges are beyond my wildest nightmares but he remains strong, and full of hope. He is surrounded by the love of his family. He knows you are out there supporting him and we regularly share notes of encouragements as a family.
This past week we have received incredible support, following the news of more cancer when we had thought there would be less. Tina’s family has been close by and have been able to visit. My parents travelled down and were able to be here, support us, and spend some great time with Sam over several days.
Victories and concerns
The cancer remains and has spread to new areas in Sam’s body.
New battle strategies have been developed but carry some higher risks. The new immunotherapy drugs will release Sam’s immune system to hit harder. Though we look forward to this pushing the cancer back, side effects of the new immune system attacking healthy tissues are also big concern.
We are thankful that we have access to such incredible tools to show where the disease is in Sam’s body.
We very thankful for the successful delivery and engraftment of the donated stems cells! To whoever made this donation I cannot thank you enough.
We are thankful to the medical team who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and care give us great confidence.
Thankful for friends who have chosen to meet regularly to pray for Sam. If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.
There is always concern that the cancer remains. We long for the day when Sam is clear of this disease.