Graft versus host

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Immune therapy seems to be causing increased GVHD
Author

Colin C.

Published

March 20, 2024

TL;DR Too long didn’t read (i.e. the short version)
  • Immune therapy treatment was initiated on Feb 29th. It took about 10 days before symptoms of Graft versus host disease started to present themselves. It is our hope that the Graft versus disease processes (i.e. destruction of cancer cells) is even stronger.
  • Targeted radiation therapy for the new disease sites, discovered on the Feb. 14th PET scan, is ongoing and will be complete by the end of this week.

Recap of the last week

Cancer war

It has been over a week since I last wrote and we have been continuing along two lines of attack against the cancer in Sam’s body.

Radiation Therapy

Each weekday we have made a trip down to the BC Cancer Centre, about a 10 minute drive away. Sam is/has undergone targeted radiation for the three new disease sites discovered last month. These visits are fairly quick with about 15 minutes needed per site and most of that time is simply setting up/positioning Sam to target the sites the same way each time. Last week treatment of the sites below his knee and on his hip were completed – as these were not near critical organs they received higher doses of radiation per treatment. Treatment of the disease on Sam’s back will be completed at the end of this week. Evaluation of how well the treatments worked will not be for a minimum of 2-3 weeks.

Immune therapy

Last Thursday, Sam was due to have another dose of Nivolumab two weeks following his initial dose. However, this second dose was delayed as his bloodwork suggested that his liver was inflamed and as such it could be dangerous to give another dose. It was a good decision! Over this past weekend Sam has much stronger symptoms of Graft Versus Host Disease (GVHD) than we have seen the entire time since receiving his bone marrow transplant (BMT).

As a reminder, the intent of the BMT was to give Sam a new immune system that would recognize the cancer and destroy it. The weeks following the transplant Sam was on a medication to keep the new immune system in-check and reduce symptoms of GVHD. Now that we know that there is more cancer, steps are being taken to release the new immune system to be more aggressive. Essentially, using different drugs, we went from applying the brakes to the immune system to adding fuel to it. The goal: activate/jump-start the immune system to attack the cancer. Of course doing this has the potential to unleash the immune system to also attack Sam’s healthy tissues.

This past weekend Sam had intense rashes and evidence that the GVHD was not only active on the outside of his body but also the inside (e.g. loss of taste, increased liver enzymes). The GVHD seemed to reach a peak on the weekend. Recent bloodwork seems to align with the symptoms we have been observing. If Sam’s immune system continues to settle back down we will likely continue with this line of treatment.

General living

Sam’s life is pretty simple: watching too much YouTube, and when he has more energy, he reads, plays video games (only rarely able to sit up to play on his PC), and occasionally reviews some studies. Lately, his activity has been limited to short walks, mostly around the RMH. He also enjoys visiting with people, though his capacity can often be low causing visits to be short (e.g. 30 minutes). Despite the length of this journey and current challenges Sam still maintains a positive attitude with statements like: “I love my life.”, “I am so happy”, “We have a great family”.

Our parental pride swelled earlier this week. A boy here at the RMH, I’ll call him B., is about five years old and has looked up to Sam. B. was having a hard week and mad at the world – Sam decided to brighten his day. Sam chose a lego set which I purchased when I was out. Sam was able to give it to him the next day and also spent some time helping him assemble it. B. was thrilled! So great that Sam took the opportunity to care for this young man!

We continue to enjoy visits with family. Tina’s family members, who live in the region, try to make a point of being here each week. We look forward to seeing them on their usual days.

We also love to see friends as they are able to come through. This past week it was great to see Jess and John with Kate and John (Jr.).

Victories and concerns

  • Sam’s energy and capacity for simple living have swung up and down over the last two weeks. Currently, his energy levels are low – mostly likely related to the ongoing treatments.

  • This is a long journey and all of our energy levels are tapped (physically and emotionally). Part of the challenge is the ambiguity. We are now in a third period (we call it “era”) of treatment (i.e. 1: chemotherapy, 2: BMT, 3:immune-therapy). The previous therapies had protocols to follow and expected end dates. The current therapy is day-by-day, becoming week-by-week… there is no clear timeline …

  • Thankful that Sam’s pain levels have been stable and generally easy to manage. The main challenges are related to the GVHD, specifically with rashes, which are not painful but are at times very itchy and hot.

  • Sam has a cold. It has now been identified as common cold that he would have had as a young child. The upside is he has a new immune system to battle it. The downside, his new immune system is like that of a newborn – needing to create antibodies for all of the diseases that Sam has already seen through life.

  • New battle strategies against the cancer have been developed but carry some higher risks.

    • The new immunotherapy drugs seems to have released 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 (i.e. GVHD).

      Sam has had some adverse effects and we need to allow these to resolve before proceeding with new treatments.

    • Targeted radiation therapy began last week and will complete this week. We are thankful this tool can be used to reduce the burden of disease on Sam. However, radiation also comes with risks.

  • We very thankful for the successful delivery and engraftment of the donated stems cells! To whoever made this donation We 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 medical care give us great confidence.

  • We are thankful for the gift of a place to stay so close to where Sam is receiving his care. The Ronald McDonald House (RMH) has provided us a home away from home. This place is an amazing example of charity at work.

  • 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.

  • The cancer remains and has spread to new areas in Sam’s body. The sites are a mass in the center of his chest (the original), and newer sites in his back (T3 vertebrae), his hip (right ilium), and left shin (tibia just below the knee).

  • We long for the day when Sam is clear of this disease.