Hi all,
Well, we have had to deal with several new developments in the past month or so.
On the 19th of November I suddenly had a temperature spike, and because I was on Interferon, we immediately headed over to the Emergency Department (ED) at the local hospital in Busselton. They kept me overnight and diagnosed a UTI as a result of my suppressed immune system. My oncologist was contacted and I was instructed to discontinue the Interferon treatment until he and met as scheduled the next week. My GP sent me home with a script for oral anti-biotics and that seemed to fairly quickly begin to control the UTI.
I had an MRI of the abdomin and pelvis on the 23rd of November in Fremantle, followed two days later with a meeting with my oncologist Dr. Phil Claringbold. Unfortunately, there was very little he could tell us at the point, since he was missing the previous scans (Gallium 88 PET) from September. He continued to keep me off restarting the Interferon treatment until we had more data from the scans. We immediately overnight express posted the CDs of the September scans to him when we got home that afternoon, and he finally called back on Tuesday the 30th. He told me that the scans showed that there was apparrently more diffinition of the tumours in the liver and it appreared the Interferon was not doing much of anything at all to help. So he discontinued any further Interferon Treatments. He also told me there as very little else available in the public health sector that he could do for me. I wasn’t eligible for the current LU177 study because of the use of Capecetabine (an allergy for me). When I asked what might be available in the private health sector, he said there were several treatments readily available. I then placed a call to my original surgeon to see what he might suggest as a course of action since I had no one else that seemed interested in managing my case and Harsha Chandraratna has always taken an interest. I have to say that going off the Interferon was a great relief. It was only after going off it I realised how poorly it was making me feel. Without it I felt very normal, energetic and positive about things.
Unfortunately all that changed that same afternoon (Friday, 26 November) when that same afternoon I had an even higher temperature spike than the previous one and we immediately went and checked into the ED at Busselton Hospital. This time they kept me in for two nights as they diaganosed that the UTI had spread to a different infection, Epididymo-Orchitis. This was extreamly uncomfortable to day the least and the fever stayed up. Eventually, once they felt oral anti-biotics could handle it, they sent me home Sunday morning. Harsha called me back Saturday afternoon whilst I was still in the hospital and immediately to referred me to, who he feels is the best oncologist in Perth for my situation, Dr. Andrew Dean. I called Dr. Deans office first thing Monday morning. He is out of town but they made me an appointment for the first day he is back, 20 December.
Everything then was going quite normally with the infection slowly reducing, until Tuesday afternoon, when I began developing a shocking pain in my left eye and upper sinus over a period of a few short hours. I had this type of pain irregularly over the past 2-3 weeks, but with a little paracedamol and a couple hours eye rest it went away and was fine. This time it was different, the pain just kept increasing and the pain meds I had weren’t touching it. This was a real concern to us, because the Septemper scans had shown a gallium focus in this area of the left eye, indicating possible tumour(s). So after a quick call to the my GP’s surgery, we were off to ED at the hospital again. This time primarily for pain control and initial diagnosis. The next couple of days had the doctors getting the pain levels lowered to tolerable (mostly using morphine) and a new CT scan of the left eye. As we suspected, there are two tumours in the area, an 11mm involving the left eye inferior rectus muscle and a 7mm at the inferiorlateral margin of the left orbital globe. My GP then attempted to contact Dr. Dean and Dr. Chandraratna, and was able to arrange an appointment with Dr Jerome Freund at Perth Radiation Oncology. They feel that this specific site is best treated with radiation and usually responds very well to radiation treatment. In the meantime I am on fairly heavy doses of oxycondone hydrochloride for pain control and dexamethasone (sterioids) for reducing the inflamation.
So as you can also see, ’tis been quite a busy start to the Christmas season. I did feel well enough last night to go to our annual Moon Haven Company Christmas Dinner, which I greatly enjoyed as did everyone there, to see me!
I’ll be keeping everyone up to date as things develop over the next few weeks.
Until next time, take care of yourselves and each other, I certainly have an angel taking care of me and her name is Leonie!
Blessing to you all,
Eric