To Hong Kong and Back

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.

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We Are Family

We’re giving love in a family dose” (Sister Sledge, 1979)

They say always take the weather with you when you go on holiday. Especially if you live in Perth with our fabulous sunshine. It seems we did that on last week’s holiday to New Zealand but we also took the family with us on what turned out to be one of the happiest and most fun holidays we’ve ever had!

Our daughter decided to marry a Kiwi and have the wedding in Wanaka in the south island of New Zealand. Right from the announcement late last year, I knew that we needed all of our immediate family to come to support them on the biggest day of their lives, but also to support Rod at his milestone – father of the bride, and make this truly memorable for him.

We set about the task of coordinating our other three kids and their fiancés, two grandkids and my parents with flights and accommodation, plus two of our oldest friends who are also just like family to us. We booked a huge apartment to accommodate 12 adults and the 2 children in Wanaka for the wedding weekend and then decided to have a few days in Queenstown for some adventures beforehand. Rod had previously only been to NZ on a Contiki holiday 30 years ago and I had never been to the south island so we really wanted to make the most of it. Most of the kids and my parents decided the same and we all descended on Queenstown en-masse for our winter adventure.

With a group of 12 in town we each decided on different sights and activities. Some went for the thrills of the canyon zip-lining, some went on the gondola cable cars up the hill for the first glimpse of snow, some took walks around the lake and town and some took a bus trip for a day up at the Cardrona ski fields. We all met up at bars to discuss evening plans and went to restaurants in town all together. We also all went as a group for a very cool drink in the Minus 5 °Ice Bar (actually -10C while we were in there!), drinking cocktails and mocktails from solid ice cups. Everyone had a ball with so much to do and especially our 6 year-old grandson who was desperate to throw snowballs at everybody. He had never played in snow and not only did he get to play and throw plenty of snowballs, he also had his first ski lesson in the kids’ club and had an absolutely wonderful time. The days were cold but clear and sunny which made for perfect snow play and amazing views everywhere we went.

Next we drove in convoy to Wanaka where we had a choice of the “short way” up and over the mountain with icy slushy roads probably requiring snow chains, or around the long way. Of course we chose the long way but on the morning radio we heard about the black ice and a few crashes that had already occurred on the route making us a little nervous, but the drive turned out to be sunny and smooth and we were treated to more amazing views. The south island is a land of rugged snow-capped mountains and lakes with breathtaking views in every direction.

And so the wedding weekend began. The last of our kids arrived in Wanaka along with more extended family. The boys headed off on a buck’s night in the afternoon and the girls got a great laugh with a glimpse of the ginger-headed groom dressed up as Ginger Spice complete with wig and short dress. We think he must have frozen his nuts off (sorry Jake but we did laugh)! We spent more time looking around Wanaka, enjoying local wineries and views before things got real for us and the bridal party at the wedding rehearsal when first tears were shed. Then it was the big day beginning with a rush of activity getting ready before all the guests assembled on a hillside in the cold winter sunshine for the ceremony. It was an incredibly beautiful ceremony in the most stunning setting and there were more than a few tears then. Rod looked every bit the proud dad walking his beautiful bride down the aisle. The bride and groom were glowing with happiness. Afterwards, the married couple flew off in a helicopter for some special photos and the crowd began to party in earnest, starting with warm mulled wine as we were beginning to seriously freeze while the sun sank. The speeches were touching and funny, the food was delicious, the wine & beer flowed and everybody danced the night away like crazy. All of the ingredients for a hugely successful wedding.

wedding site

We then had one more day with everyone together to relax, recover and reminisce with the couple, families & friends and to enjoy more of the gorgeous area (I even got to fly a plane, very exciting!!) before everyone went their separate ways and headed home.

Today we are back home with the rain and straight into the cancer centre for Rod’s next chemo treatment so I’m glad we did take that weather with us. The weather made it so enjoyable, but taking the family with us is what really made it special. For those that don’t know us, we became one of those “blended” families when Rod and I met and settled down together more than 14 years ago. We might have two kids each but to us, having been through 14 years of family ups and downs with 4 young teenagers who grew into 4 young adults to be proud of, we are family. To have all of us there for one of their big life events and for it to be such a special and magical trip for all of us is one of the best memories we will always have. Memories of the little kids, the medium sized kids and the oldies all laughing and having fun, even my dad telling us he was really enjoying it but “shhhhh, don’t tell anyone!”

Here we go again.

Its back in the hot seat today. Back to chemotherapy. Since the end of my last course of chemotherapy, my tumours have managed to grow back to almost their original size. This happened in the space of about 3 months. Bugger! Not good. But there is some good news in that, they have not spread anywhere else and are still confined to my right lung only. Hopefully this second course of chemo will shrink and confine them again.

Whilst I was on my first course of chemo and on the clinical trial, my chemotherapy and other treatments were covered by the clinical trial drug company in a private hospital. However, since the trial finished, I’m now being treated as a public patient at Charlie’s (Sir Charles Gairdner Hospital), a world renowned centre of mesothelioma research and treatment. I don’t expect my treatment to be any different to my first course and I am quietly pleased that I’m now under the wing of some truly outstanding people in the area of mesothelioma research and treatment.

However, I’m very aware that the effectiveness of this course of chemo may be less than the first course and very temporary. With this in mind, I sent all my scans to a thoracic surgeon in Sydney, last week. The surgeon specialises in extrapleural pneumonectomy (EPP) surgery. This basically involves the removal of the cancerous lung and surrounding tissues. It is very radical and high risk surgery and only available to very few mesothelioma patients. Fortunately, the surgeon informed me that I was suitable for the surgery. It is not a cure, but evidence does suggest that it offers a longer life span. Indeed, many long term survivors (3+ years) that I have come across have had the surgery. There is no guarantee of anything, and sadly, the person who put me in touch with this surgeon, passed away this week, 3 weeks after she had the surgery herself. I don’t know what her complications might have been.

I will continue on chemotherapy until late September, then I will have scans to determine if I’m still suitable for surgery, that is, no regrowth and no spread. I then, may have a huge decision to make regarding the surgery and will need to consider the risks, the effect on quality of life and the effectiveness of the surgery. It will involve 4 months of surgery, radiation therapy and convalescence. It will also mean that Paige and I would have to relocate to Sydney for 4 months.

It’s a big call. This surgery is only performed (in Australia) in Sydney and most oncologists think that the balance between longevity and quality of life tend to negate each other and therefore do not recommend the surgery. However, surgeons who specialise in the surgery tend to disagree. It will be a case of sorting out the facts, the research, the vested interests and talking to people who have experienced the surgery and life after. We have spoken to some people already and they all have positive comments to make about the surgery.

I may not even get to make a choice. My tumours may grow and spread, ruling me out. If my response to chemo is less than my first course, I would probably elect for the surgery, knowing that the effectiveness of future chemotherapy will diminish and eventually have no effect. Not to mention the impact on the quality of my life.

In the meantime, I have 6 doses of chemo to get through. I coped well with the chemo last time. It was the clinical trial drug that gave me problems. Hopefully without that drug, this course of chemo will progress smoothly. I have 4 months to get myself super fit in readiness for potential surgery. But before I get to surgery I have the weddings of my two children to get through, starting with my daughter’s wedding in New Zealand at the end of the month. Looking forward to some happy times.

For Denise.

 

 

Who Listens to the Radio?

That’s what I would like to know? Hopefully you will be on Sunday, 17th June at 1pm (to be confirmed). Tune into the ABC’s Science Friction programme on ABC RN, hosted by the charming Natasha Mitchell. Natasha is an award winning science journalist and podcaster who fronts the Science Friction radio programme which takes a deep look at the science behind the hot issues of the day.

I had the pleasure of being interviewed by Natasha at the ABC studios in Perth today. Well, Natasha was in the eastern states at the time, but I hopped into the ABC’s Tardis (a recording studio) and though the marvel of modern technology we were soon chatting away as if we were in the same room.

Natasha is putting together a programme focusing on the ethical issues surrounding clinical trials. I saw a post from ABC Science popup on my Facebook feed last week, asking if anyone out there had experience with clinical trials and would like to share their experience to their radio audience. Not being one to shy away from sharing my experiences, I sent off a message and within a few days I was summoned to the Tardis to spill the beans.

Natasha had done her research. She had read this blog from start to finish and had a load of questions to fire at me. She has a very relaxed and calming manner and is beautifully spoken, which made me feel quite at ease. Although the programme was focused on the ethical issues surrounding clinical trials, we discussed a lot about how my cancer had impacted on me and my family and how we coped with it. It was the first time I had actually spoken at length to anyone about all of this, and like writing these blogs, I found it extremely therapeutic and relaxing.

We also discovered that we have a common taste in not so common music. You may recall my reference to the song Winnebago Warrior by the Dead Kennedys in a previous post. It turns out that Natasha is a keen fan of the Dead Kennedys as well as many other 70’s bands and singers and like me, recently turned her hand to the bass guitar. Now Natasha wants me to send a recording of a Led Zeppelin riff. Looks like I have got a whole lotta practicing ahead of me.

If you miss the radio programme on Sunday, it is repeated on Mondays at 12:30pm and Fridays at 11:30 am. Podcasts will also be available to download.

Visit the Science Friction site at http://www.abc.net.au/radionational/programs/sciencefriction/

 

 


The Sports – Who Listens to the Radio

Back to Square One

Around the end of February this year, towards the end of my chemotherapy, we planned a 6 week trip to Europe for July and August this year. You may recall my last post where I described the anxiety I felt shortly after, about whether I would be healthy enough to actually go on this trip. We subsequently booked a 6 week trip in April/May instead (while keeping our July/August option open).

manarolla01

We had a fabulous time in Europe in April and May. While touring I was a bit under the weather from the side effects of my clinical trial drug, but that didn’t really stop us. We visited many places we had not been before and caught up with some dear friends in the south of France. But all good things must come to an end and before we knew it, I was lying down in the CT scanner, getting zapped for my 6 weekly scan.

The next day, I visited my oncologist to get my results. However, the news he gave me was completely unexpected. My clinical trial had been closed. There were about 470 participants around the world who had originally started the trial, but the numbers had reduced significantly and the investigators decided to close the study and analyse the results they had. Their conclusion was that the trial drug offered no significant benefit to mesothelioma sufferers. I was expecting/hoping for a positive result, with the trial continuing until late 2019. That knocked the wind out of my sails! But unfortunately there was more bad news to come. My scan showed that my tumours had regrown sufficiently enough to put me out of the trial anyway. They were still smaller than when I was first diagnosed but growing large enough to indicate the current treatment was not working.

So it’s back to chemotherapy in a couple of weeks time. Six doses of Cisplatin and Permextred spread over 15 weeks. The same regimen as my last dose. I tolerated the chemo quite well last time and achieved moderate shrinkage. Hopefully, this time the result will be the same.  This may be my routine for some time until I try some immunotherapy or other treatment (of which are very limited). One positive, is that I no longer have to take the clinical trial drug and therefore my chronic diarrhoea that I have had to endure for the last 8 months will crawl back from where it came!

So, Europe in July and August is out. My daughter’s wedding in New Zealand this month will fit neatly in between chemo sessions and my son’s wedding in October will be a few weeks after all my chemo finishes. Hopefully I will be ripe for both.

Its not quite back to square one. My tumours are still smaller than when I started and I have no pleural thickening or fluid build up at all. A significantly better position to be in. But its back to the same treatment and back to the unknown. Being off the trial means that I will no longer have scans every six weeks, they will now be every 2-3 months. I had some comfort knowing my tumours where being monitored frequently, now, that is not the case.

Our decision to go to Europe earlier, turned out to be the right call and further reinforces our philosophy to live for today. Mesothelioma is a prick of a disease. It won’t go away and will always come back. When it comes back is the great uncertainty, but it is usually sooner than later.

 

Now or never

Today I got the results of my latest scan, 9 weeks after my last round of chemo and 6 weeks after my last scan. Whilst on chemo, the scans showed a gradual shrinkage of the tumours. However, with this scan and without the chemo “umbrella”, I was feeling very nervous about my prospects.

Fortunately, the scan showed that the tumours were stable and all my blood tests came back normal (for the first time). I’m feeling 100% and looking forward to the next 6 weeks.

About three weeks ago, we decided that there was too much uncertainty about my condition and that we should make the most of my good health when we can. We have actually been doing that all along, but we had booked a holiday to Europe in July and felt that was too far away and because meso can be so unpredictable, we needed to make the most of our time now!

Prior to my diagnosis, we had planned to attend the 2018 ANZAC Day commemoration in France on the Western Front. We had made plans, booked hotels and organised our passes to attend the commemoration. Friends from the UK were coming across to join us. Unfortunately, my diagnosis put an end to all that planning. We cancelled bookings and sadly told our UK friends that we would not be going. Our friends still intended to go, and it was with much disappointment that we could not join them.

We had organised all the passes for us and our friends, in Australia. While talking about the coming ceremony with them, we said “We still have our passes, f*** it! Let’s go”. So the last 3 weeks has been a mad dash booking flights and hotels to enable us to leave this week on a 5 week European holiday.

First, I needed to consult with my oncologist about traveling, especially as I would miss a scheduled appointment and blood tests, which are a part of my clinical trial. My oncologist didn’t have a problem with any of that, so that sealed the deal. It was all systems go. Of course, we would not be going just to the ANZAC Day commemoration, we also needed to plan an itinerary for the 5 weeks. We decided that we would try one of those luxe river cruises along the Danube and Rhine Rivers, from Budapest to Amsterdam. Not our usual form of traveling, but highly suitable for chilling out. We also plan to visit Prague, Florence and the south of France to catch up with some friends.

We are taking a bit of a risk, as my condition is not covered by travel insurance, but feel that I am well enough to last the 5 weeks without any difficulty. Fortunately, many of the countries we are traveling through have reciprocal health care agreements with Australia. So if it all goes pear-shaped, I should be able to access adequate care and treatment. Its not guaranteed, but its something.

So now, everything is in place, everything is booked and we count down the days until departure. We fly into Paris a few days before ANZAC Day, pick up a car and head north towards the Western Front. We have booked a restored farm house for the first few days. Our UK friends will join us there to start what will be a very memorable holiday.

Au revoir!

 

 

 

 

Now what?

Well, this is it. I have completed my first 6 rounds of chemo and have just returned from my specialist to get the results of my latest scan which I had last week. The chemo managed to shrink the tumours by about 30% since the start of chemo. Better than an increase, but not as much as I had hoped. Pleural thickening was significantly reduced, as were fluids. However, the reality is that chemo will only ever shrink the mesothelioma tumours. It will never get rid of them. That’s why mesothelioma is particularly nasty, there is no cure, only treatment. I now wait for the mesothelioma tumours to grow back again. They will, it’s a matter of when. For some unfortunate sufferers, it can be immediate, for others, it can be up to 12 months, but by then, most will experience regrowth. I am on a clinical trial of the drug Nintedanib. Nintedanib is designed to slow/stop the growth and spread of tumours, hopefully this will give me more time before I have to deal with the regrowth, but we are only talking months here, not years.

Fortunately I coped with the chemotherapy very well. I had minimal side effects and there appears to be no residual or permanent damage. This holds me in good stead for further chemotherapy down the track. Just keep whacking those tumours like hungry hippos whenever they pop up. Longer term survivors tend to have multiple chemotherapy treatments over time. Eventually the chemo will become ineffective and then I will have to look at other options. Unfortunately, other options are rather limited. I may be able to try the immunotherapy drug Keytruda. If I can get on a trial, that will save us a packet load of money (+$60,000). Keytruda has shown some great promise in some mesothelioma sufferers, but not with everyone.

A Big Week

The last week has been huge. Tuesday was ‘M’ day. Mediation day. After months of dealing with lawyers, affidavits, expert opinions, witnesses, courts, assessments, diagnoses and prognoses, we had our day in court (or rather mediation room) with the defendants named in my claim. We had heard a lot about the process and the defendants’ approach to mediation and consequently we were a bit anxious about our chances of getting a satisfactory outcome. Fortunately, my exposure to asbestos was well documented and beyond doubt, so there was never any question of liability, it was simply down to the compensation.

The whole mediation process is a bit like buying a house with both parties making offers and counter offers, starting with ridiculously high and low offers. After about 4 hours we eventually agreed on a deal that we were satisfied with.  It will ensure that I can cover future medical costs and care if needed down the track. Overall I found the defendants pleasant and cooperative. They were genuine about achieving a result, but only because we felt that they wanted to avoid court at all costs. So did we, but we would have been confident of achieving a very satisfactory outcome in court as well.

Since starting chemo, I have developed a bad dose of snoring and sleep apnoea. It has settled down in the last few weeks, but on Wednesday I was wired up for a sleep study at home. This involved going to the specialists to be wired up with probes, tubes and sensors, on my body, legs, arms and head. I looked like something out of a sci-fi movie, a humanoid, bionic terminator. I went home with instructions to make sure everything was in place and working when I went to bed. Very uncomfortable, but I eventually got to sleep just after midnight, but woke regularly during the early morning. I think I managed about 3-4 hours sleep. I don’t know what the doctor will make of that, but I don’t think there is anything too much to worry about.

On Friday I had the CT scan. Due to a public holiday the following week, I had to wait a bit longer to get the results. This resulted in a nervous and “scanxious” long weekend.

We feel that we have put behind us a lot of stress and anxiety with the events of this week. The legal claim is resolved, sleep study done, chemotherapy finished and final scan done. We can forget about hospitals, lawyers, take a few less medications and allow my arms to recover from all the needles and catheters that have been inserted over the last 5 months. I will still continue on the clinical trial, but that will be less invasive and demanding than the chemo routine. We look forward to some stability and good health in the coming months. So for now, while I’m in fairly good health, I just need to focus on the good things that are planned for 2018, three weddings, a bit of travel and a lot of quality time with family and friends.