Its been quite a while since our last post, about 7 weeks in fact. This was mainly due to the fact that nothing much has happened. However, we did have to deal with a first world problem, in that, we had some frequent flyer miles coming up for expiry in the next few months. Turns out it was just enough points for 2 return tickets to Hong Kong. So, it was off to Hong Kong for a week in between chemo doses. It was hot, crowded and full of shops. We visited a few markets in Guǎngzhōu (Canton) on mainland China while there. There were all sorts of weird concoctions available for all sorts of ailments. Freshly dissected, raw, snake bladder (full) was the recommended one for liver problems and for good long eyesight. I wonder what they had for mesothelioma. I had to settle on dim sum, instead.
I have now had 3 doses of chemo on this second course. Three more doses to go over the next 9 weeks. I dealt with the first 2 doses very well. I hardly had any side effects and pretty much continued on as much as normal The last dose was bit more toxic to my system and I spent most of the following 3 weeks not feeling too great. Still, the effects were relatively minor and I managed to spend most of that time doing normal things (but a bit subdued).
I’m starting to think that the toxicity of 9 doses of chemo is starting to build up in my system and I am anticipating that the next 3 weeks won’t be very pleasant. I have my 4th dose of chemo today.
One thing I did do last month was to change my oncologist and treatment hospital. I signed up with my previous oncologist after being accepted into a clinical trial. This trial was conducted at a private hospital, and as I didn’t have private health insurance, all my costs were met by the clinical trial. However once the trial ended, I had to look at the public system for my treatment. I continued with my oncologist as he was also a consultant in the public system.
Unfortunately I wasn’t overly satisfied with my previous oncologist. He was very reluctant to share any information with me and seemed to be not totally aware of who I was, my condition and treatment at times. Every time I suggested the possibility of other treatments other than chemotherapy, he instantly dismissed them “as a waste of time and effort”. He was not forthcoming with anything else but chemotherapy, which would ultimately be a case of diminishing returns. Then what?
I am very fortunate that Western Australia is a centre of world excellence in mesothelioma research and treatment. This is probably due to the fact the Western Australia has one of the highest occurrences of mesothelioma in the world, if not the highest. Thanks Wittenoom, thanks CSR, thanks James Hardie for that.
Most of this excellence is at Sir Charles Gairdner Hospital, or “Charlies” as it’s known here and led by Professor Anna Nowak, a world renowned mesothelioma specialist. I asked my previous oncologist if he could refer me to her so I can get a second opinion about my prognosis and treatment. My oncologist became all indignant about that. I wasn’t impressed with his response and felt it was time to look elsewhere. I got my referral to Professor Nowak and had an initial appointment with her. We went through a whole range of treatment options, none of which my previous consultant had discussed with me. She did say that most of these treatments were not as effective as chemotherapy, but in some instances, some were very effective for specific individuals. She did say there was a case for trying some of these and she set out a scenario of the types of treatment I could consider, depending on how things progress. This was very reassuring, as was her comments, that I had all the biomarkers, that would suggest that my survival chances may be more medium than short term (relatively for this disease). The caveat on all that is that mesothelioma is so unpredictable that it could do an about face at anytime.
I was still seeing my oncologist in his private rooms, getting treatment at Charlies and scans and bloods done at private radiologists and pathologists. Professor Nowak agreed with me that it made a lot more sense to bring all of that in house at Charlies. So now I’m a fully signed up patient at Charlies. I’m happy about that, as I feel that I will get the best possible care while there. That’s a good wrap for the public system.
The good news is that I had a scan last week to determine how my second course of chemo was progressing. I got good shrinkage, equal with the best shrinkage I got in the first course. I have 3 more doses in this course so hopefully I will end up with more shrinkage than my initial course. This would be a great outcome considering the law of diminishing returns is applicable to successive chemotherapy regimens.
Hopefully I can enjoy a bit of stability after this course. Hopefully its a lot longer than the 3 months I had between my first course and this current course. The probability is that I won’t, but who knows, this beast is so unpredictable. When it returns, I will hit it with more chemo, a less toxic form and therefore less effective, but it may stabilise it for a longer period of time as I should be able to cope better and longer with this form of chemo. Just have to wait and see (again).
I’ll leave you with some more of my eclectic musical past.