Monaleesa3 trial follow up, and lots more

Hi all, 

I previously posted that I looked like being a good candidate for the Monaleesa 3 trial. Many tests later I was accepted and had the first dose. Half an hour later I began throwing up (well outside the time parameter they expect if you do have reactions) and suffered abdominal distress to such an extent that I ended up being hospitalised for a week. Being the enthusiastic little guinea pig that I am I was prepared to put those side effects down to an aberration and give it another shot. Not so the drug company. As far as I can read between the lines mine was a far more intense reaction than other, similar, reactions and they have since changed the parameters of the trial.

However, before my departure, the trail doctor did a basic health check and discovered I now had a resting heart rate of 120. This would have excluded me from partaking further in the trial anyway.

Monaleesa 3 trial aside, I had been having increasing dizzy spells for the past several months and having to sit/lay down instead of falling down. That was when I had enough energy to actually stand up. During the constant round of tests to diagnose my metastasis and determine eligibility into the trial I had mentioned this as a symptom and that it was increasing in severity. Without exception, all medical personnel dismissed it as dehydration and/or anxiety. I explained constantly that the dizziness began 10 days before the symptom which led to the diagnosis of my metastasis, that I was relaxed on holidays and that, since my diagnosis of a paralysed vocal cord, I drank almost constantly to relieve my throat dryness.

Since I was now excluded from the trial I was referred back to my old oncologist. She prescribed Arimidex and radiotherapy to my sternum. I described to her very clearly and assertively the issues I had been having with, now almost constant dizziness. Finally she gave me a script she assured me should help. They later turned out to be seasick tablets.

One week later the dizziness became so inescapable that I asked my partner to take me to hospital right away. For once luck was on my side with a free car park right at the door and no queue at triage. They decided to admit me and did what nobody else had bothered to do. Test what I was saying. Tested my blood pressure while sitting. Fine. No problem. Then they would have me stand while testing it. A drop of some 50 units. One measurement was as low as 48/34. Small wonder that I was feeling like absolute crap. Add to that my resting heart rate of 120 which increased even upon sitting up and no wonder I was constantly exhausted and spent most of my time in a heap.

Now they had me in hospital finding what caused it was another thing entirely. They described me as a mystery and as cardiology, neurology, oncology and endocrinology all had turns at me, and they eliminated all the nice pretty treatable causes, they came to the conclusion which my partner and I had feared from the outset - that it was connected to the Horner Syndrome which saw the diagnosis of my secondaries and the dizzy spells preceded its appearance by 10 days. Turns out that the cancer's invasion has caused compression of the Vagus (sounds like it should be a winner, but it's not) nerve. "What happens in the vagus nerve, it turns out, doesn’t stay in the vagus nerve. The longest of the cranial nerves, the vagus nerve is so named because it “wanders” like a vagabond, sending out fibers from your brainstem to your visceral organs. The vagus nerve is literally the captain of your inner nerve center—the parasympathetic nervous system, to be specific. And like a good captain, it does a great job of overseeing a vast range of crucial functions, communicating nerve impulses to every organ in your body." So, depending on the progress of the cancer on this nerve, I could be in for any number of health surprises.

I ended up being in hospital for 4 weeks while they tried to get as much control on this as they could. I found the lengthy stay frustrating but, on the other hand, after months of being dismissed it was so good to finally be acknowledged and have them work towards helping. 

I now have a new drug regime which stops my huge blood pressure drops and in my better moments I can walk around the house without using a walker. Though the walker does help with the dizziness the tachycardia sees me so exhausted that I do little walking. Unfortunately any treatment which would have helped with the tachycardia would have worsened the blood pressure.

While I was in hospital I saw my original oncologist walk past my room and she glanced in at me as she passed and from the look on her face I knew she was not going to return that way. Having what I can best describe as a loss of faith with her, I will be getting a new oncologist.

Tomorrow we will be attending the disability expo in Melbourne and I am looking forward to seeing what gadgets and aides they can offer me as we go caravanning. Give me some powered wheels and I reckon I can go most anywhere I could before this drama.

And to those of you who have managed to read this far on my post, part information, part venting, part seeking of understanding on this rollercoaster we have had inflicted upon us, I wish you well and hope my next update resembles a novel somewhat less.