Catch-22, Biopsy Results
In clinic yesterday, April 17, some of the medical strategies and understandings of Sam’s ongoing treatments were changed.
- Primarily, a lower priority is being placed on the mass in Sam’s liver. This tissue is thought to be benign and not the source of stress to his liver.
- The source of stress to Sam’s liver is now believed to related to his immune system continuing to run out of control. The use of steroids to bring the immune system in-check has not wholly been effective. New drug therapies have been initiated.
I have edited the post below – striking out what is no longer believed to be accurate. New additions are italicized.
Sam and I are up early this morning in anticipation of an ultrasound appointment to image Sam’s liver. It is so nice to chat with my boy in the mornings. His energy has continued to improve over the last 10 days. He does not need to sleep as much and he is able to walk most places now and we are rarely using the wheelchair to transport him around.
Cancer war
Below I attempt to convey the latest biopsy results and what this means for Sam’s cancer treatment. I suggest taking it slow. The picture is complicated as we now how two issues to resolve – the liver, and the cancer.
Initial biopsy results
Last Wednesday, Sam had a biopsy of his a growth in his liver, and yesterday we received some preliminary results. The good news is that this new growth is not Sam’s original cancer! However, we do not yet know definitively what it is – that will need to wait for the full report. What we do know is that this growth is likely a source of dangerous agitation of Sam’s liver, and that it needs to be treated. It is now believed that the source of ongoing agitation to the liver is the on-going de-regulation of Sam’s immune system … effectively GVHD though it can be debated if this is the right term.
Treatment
- Catch-22
… a dilemma or difficult circumstance from which there is no escape because of mutually conflicting or dependent conditions (Wikipedia)
We are in ‘catch-22’ situation. The new site in Sam’s liver immune system needs to be brought under control as it is likely the major source of ongoing agitation to Sam’s liver. This is indicated in Sam’s regular bloodwork where various chemicals indicative of liver health and function are dangerously high. The best chemical method for treating growths like this involve using steroids (i.e. Prednisone) – Sam is currently on these. Initial efforts to bring the immune system in-check used steroid (i.e. Prednisone). However, the steroids have shown themselves to only be partially effective and an alternate drug therapy has been initiated.
However, this steroidal treatment suppresses the immune system.
In the treatment of Sam’s cancer we have been using drugs to cause Sam’s immune system to be hyperactive (i.e. the opposite of suppressed). As such we are in a catch-22 situation. To treat the liver we must suppress the immune system, to treat the cancer we must make the immune system hyperactive1.
…Ughhh…
The imaging from this morning’s ultrasound, April 16, suggested that the mass in the liver is stable and likely benign – it will be monitored but no further action is currently needed. Medical actions will focus on bringing the immune system under control.should provide the medical team enough new information to determine how the current treatment is working and what alternate treatment options may exist.
I think what much of this comes down to may simply be timing.
- Treat the liver quickly.
- With the liver treated we can return to the immune therapy of the cancer.
Once the liver agitation is resolved (or mostly resolved). We can return to managing Sam’s cancer.
Hope and anxiety
- Hope
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If there is anything exciting from all of this it is that the new site is not Sam’s original cancer. This means that Sam’s cancer has been stable since the treatments following the PET scan back in February. This also means that the BMT-immune therapy treatment combination seems to be working.
- Anxiety
-
In waiting for the liver agitation issue to be resolved we are delaying immune therapy treatments for the cancer. During this period it is possible that Sam’s original cancer could get going again.
Living Life
Friends and Family
We had a good weekend. It has been great to see Sam with more energy and able to engage with people more. An upside of the current steroid treatment is that it has released Sam to have increased energy and we have seen more of chatty-Sam. We were also able to have some great visits. Brian and Hunter were here from Prince George. We were able to visit family and watch the Edmonton-Vancouver hockey game together. Nana Mary arrived yesterday and will stay with us for a few days.
Sam remains courageous, hopeful, and generally joyful.
Victories and concerns
Thankful that the original central mass is stable. Thankful that three disease centers, treated using targeted radiation, have been removed.
The newest growth in Sam’s liver is not the original cancer! However, it needs to be treated in order to continue on with Sam’s cancer treatment.
Thankful that Sam’s energy has increased!
Thankful that Sam’s pain levels have been stable and generally easy to manage.
The new immunotherapy drugs seems to have released Sam’s immune system to hit harder. As the immune system was starting to get out of control brakes have been able to slow the immune system back down. It is good to know that the chemical brakes work, at the same time we do not want to suppress the immune system too long as it is the main method of battling the cancer.
We mourn the loss of Dani – grieving in solidarity with her family.
We are thankful to the medical team here at BC Childrens’ Hospital 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).Latest scan revealed a potential new site on Sam’s liver.We long for the day when Sam is clear of this disease.
Footnotes
It is not quite as simple as this… as the treatments are a not a 1:1 exchange, but alternate treatments do strongly impact each other.↩︎