Meandering Medical Musings

Encouraged by the positive prognosis shared previously on the blog, we plunged into activity, optimistically facing the daily ups and downs.(Activity Amusement & Adventure) After barely two weeks, pain arose in Geoff’s left side which gradually worsened until it became entirely debilitating. (this post) Amazingly, recent changes in treatment have achieved the best outcome healthwise since Geoff’s diagnosis. (Liver Mets Lead to Lorlatinib)

 Meandering Medical Musings

When the pain in Geoff’s side became so severe that driving to emergency wasn’t a viable option and cumulative doses of hydromorphone had brought no relief, I called the ambulance. It happened that all vehicles were attending to life-threatening night-time emergencies, so after giving me advice regarding pain management, Geoff's case was handed over to other healthcare providers.

Thus began a stressful week as I tried to advocate for an effective solution.

One difficulty arose because Geoff could partially manage the pain himself. If he limited lying down to 30-40 seconds, when he stood up the pain would quickly subside. Likewise, if he only sat down for 5 minutes.

Naturally, he would find a position that minimised pain whilst waiting for a healthcare worker. One night, upon finding Geoff in no immediate distress at 1 am, a perplexed healthworker faced the dilemma of justifying medication for unobserved pain, resulting in no treatment except for recommending that he sleep in a recliner, "pain is to be expected with stage 4 cancer."

Another difficulty came from an emphasis on addressing the pain symptom as a palliative care patient rather than prioritising a doctor’s diagnosis and remedy for the cause.

The painful saga began on a Thursday night, and my best efforts to have a clear plan in place for the weekend failed miserably. We even had to stop half way home from church for some ‘stand-up’ pain management.

One week later, due to sheer exhaustion, Geoff slept most of the day. By this time countless dear friends were praying for healing. Almost miraculously the severe pain disappeared and has not returned, praise God!

Coughing began in May, tiredness and bone pain developed in June, confusion was evident by July. Numbness, weakness, loss of weight, loss of appetite, fast pulse, anxiety, agitation, delirium, dysphasia, insomnia, fever, muscle atrophy, skin rashes, weak bones, fluid accumulation, increased appetite, weight gain, facial swelling, photosensitivity and thin fragile skin are among the symptoms that Geoff has experienced. But which of these have been due to the cancer?

Every treatment has a raft of possible side-effects, prompting the question:

Could a pathway be found to identify the symptoms primarily caused by medications, monitor the effects of reducing doses to minimise or eliminate drugs and maximise the positive health outcomes?

Reading about the purpose, side effects and half-life of each drug was fascinating yet scary. I learnt that many of the drugs interfere with chemicals that carry information between nerve cells, often impacting normal mental processes.

Taking the scientific approach of making only one small change at a time, the doctors recommended gradual decreases and advised me to look out for signs of concern. From 14 doses of various medications taken at 6 different times throughout the day, we are thankful that currently Geoff only needs two cancer treatment drugs, medication to manage two side-effects and a multivitamin!

One of the continuing drugs, Dexamethasone, is a corticosteroid which suppresses the body’s immune response (to disease) and reduces swelling (from the body fighting the cancer cells).

Initially Geoff was put on so many drugs at once that I didn’t manage to ask about all of them but I think the first reason for this drug was simply the extent of the cancer. Then when cancer was discovered in the skull and linings of the central nervous system (CNS), the dosage was doubled to 16mg to prevent swelling in the brain. However, due to the long half-life of this drug, the level in Geoff’s body may have reached over 50mg. So rather than the presence of cancer in the CNS linings (leptomeningeal disease), it may have been the high levels of Dexamethasone that had caused hallucinations and hyper delirium.

Observing the progress in Geoff’s mental state with each reduction in the Dexamethasone dosage, the oncologist hoped this drug might no longer be needed. He gave me a plan of action and instructed me to look out for signs of pressure in the brain such as headaches and nausea. Hence, any connection to the pain that soon began in Geoff’s left side wasn’t immediately obvious.

A doctor explained that the severity, location and positional nature of the pain pointed to the source being stretching of the glassy smooth covering of the liver, liver capsule pain. And the cause of the stretching was probably increased swelling associated with cancer close to the surface in a specific liver region. To reverse the swelling, the Dexamethasone level needed to be rapidly restored then stabilised at 2mg. What a blessing when the pain resolved completely!