Farewell Mags

Sadly another mesothelioma sufferer that I had shared a lot of stories with has passed away. Mags Portman was a doctor in the UK who was diagnosed with mesothelioma in early 2017. Being a doctor she knew exactly what she was up against and fought the brave fight all the way.

She was a highly regarded and awarded sexual health practitioner who set up many programmes in the UK which benefited many. While battling to save her own life, she never stopped trying to save others.

Mags was very young and leaves behind a husband and two small children. Mags had her own blog. You can read about her battle and her work here.

Rest In Peace Mags

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Taking Stock

This week I started back at work. After 16 months of chaos, hospitals, doctors, needles, drugs, travel, sadness, anger and depression, it was time to get some routine back in my life. Although my cancer is now at the same point it was when I was diagnosed, I have a lot more confidence that I’m going to manage what lies ahead, better than I thought 16 months ago.

The 16 months of treatment has had a moderate effect on my health, especially my fitness. Prior to diagnosis, I was cycling to work, 30km each day. It has been a year now since I last rode my bike anywhere. A combination of lack of physical activity, steroids and eating too much comfort food has seen my weight balloon out by 12kgs. You are supposed to lose weight on chemotherapy. Not fair! Doctors keep telling me its better to have the extra weight than to not have it when fighting cancer. I’m sure they are just being polite. This inactivity and extra weight have only compounded my loss of fitness.

Apart from the weight gain and loss of fitness, I have gotten out of the last 16 months quite lightly. I have mild neuropathy (pain, cramp, tingling, loss of sensitivity) in my feet and left hand. Although these seem to be getting better and don’t really bother me that much anymore. My hearing, especially my left ear has suffered considerable loss. This is a well-documented effect of the chemotherapy. Given that my hearing was already poor prior to treatment, I am now almost deaf in my left ear. I have a check up with my audiologist in a few weeks, so I will be able to quantify how much loss. I’m not overly concerned about that as I have spent most of my adult life with hearing difficulties and have a range of strategies to cope.

As for damage or loss of function due to the actual cancer, I have yet to notice anything. I have occasional shortness of breath and tiredness, but I put that down to lack of fitness and extra weight. I’m sure the cancer is doing damage, but its not yet evident. I have no pain, tenderness or other signs to indicate something is wrong. It may be the calm before the storm, but I hope the storm is a long way off.

Mentally though, it has been a depressing 16 months. But, it has been therapeutic to write and talk about my condition with others. I have established a large network of fellow sufferers and their supporters and we share our fears and hopes. Some cope very well, others don’t cope at all. It is quite lifting to share your experiences to help others.

My biggest gripe is a damaged medial collateral ligament (MCL) in my knee caused by playing too much golf! This causes me far more grief than the mesothelioma or treatment. I’ve only recently started playing golf (after a 40 year break). My son and sons-in-law all play golf and its been a lot of fun getting out with them. I hope to get out there more this year.

I am only returning to work for 2 days a week at this stage. I may increase that time if I feel I can cope with it. I still have a lot of treatment ahead of me. Fortnightly infusions, scans, blood tests etc will take a lot of my time each week, but I’m hopeful that the treatment will be gentle with my health and enable me to work and be a bit more active.

At this point, I am quite at ease with my situation. Sure, I’d be at more ease if I not had mesothelioma, but given that my oncologist gave me 12 months, I think I’m going ok. I know I have not yet faced my cancer in full flight, and I know that will come. Sadly, I have met many mesothelioma sufferers personally and online over the last 16 months and many of them are no longer with us. So, while I’m taking stock of my current situation, I know the reality that awaits.

Rare Cancers

Mesothelioma is a rare cancer. A rare cancer is defined as a cancer that has less than 6 incidences per 100,000 people. Examples are brain tumours, thyroid cancers, liver cancers, pancreatic cancers, kidney cancer, testicular cancer and many more. In fact, most cancers, except breast, prostate, bowel, lung and melanoma, can be classified as rare or less common. Mesothelioma has an incident rate of about 3 per 100,000 people. In comparison, melanoma has an incident rate of 49 per 100,000 people. More people get melanoma than mesothelioma (16 x more) and more people die from melanoma than mesothelioma. However, the number of deaths from melanoma is only just over double that of mesothelioma (1700 v 800) per year).

This is a huge disparity in the number of deaths. The comparatively high mesothelioma death rate can be partially attributed to the aggressiveness of mesothelioma, but it is also due to treatment (and prevention) options for mesothelioma being vastly under funded when compared to the funding for common cancers like melanoma.

Mesothelioma is not alone. Similar statistics exist for other rare cancers. In Australia, rare cancers account for 25% of all cancer diagnoses, however, they account for almost 50% of all cancer deaths, but only receive about 20% of research funding.

There are many new promising drugs being developed, especially in the field of immunotherapy. Some excellent results have been obtained from clinical trials (for many cancers) with these drugs (eg Keytruda). Very common cancers have large scale clinical trials and these trials have provided comprehensive evidence of the effectiveness of many of these drugs. This has led to some them being listed on the Pharmaceutical Benefist Scheme (PBS), allowing patients of common cancers to access them at a very affordable cost.

However clinical trials involving rare cancers are infrequent and very small. As a result, rare cancer clinical trials cannot provide the comprehensive data set required for PBS listing. As a consequence, new and promising drugs remain unavailable to rare cancer patients. Politicians point out that there is insufficient evidence of their effectiveness in rare cancers. That is because there has been insufficient effort to obtain that evidence. The current PBS listing process means that these new drugs will never be available for rare cancers. This process needs to change.

Rare cancer patients can self-fund some of these drugs, but at a significant cost. Keytruda is available to self-funded patients at a cost of around $80 per kg of body weight, EVERY THREE WEEKS! A person weighing 75kg would be expected to pay around $6000 every three weeks, plus the cost of administration (it is done at home by a private service at a significant cost). These treatments are long term. To consolidate the effectiveness of these drugs, a treatment regimen of about 2 years is not unusual. It doesn’t take too much mental arithmetic to work out that costs can exceed well beyond $100,000. Fortunately the pharmaceutical company providing Keytruda has reduced the cost after the first $60,000 paid to about $1000 per treatment. Nonetheless, this is still a significant burden on mesothelioma patients who are already most likely in financial stress.

There is something very inequitable about a melanoma patient receiving a potentially life saving drug in the comfort and security of a modern hospital, at next to no cost to the patient, and a mesothelioma patient scrambling to find $6000 and organising his or her own infusion every three weeks for the same drug.

The PBS listing process needs to change. ALL cancer patients should have access to the latest and most promising treatments. Allowing subsidised access to PBS listed drugs for the small number of rare cancer patients could significantly reduce the total number of cancer deaths in Australia.

If you would like to know more about rare cancers and how to contribute to the push for a more equitable PBS scheme, please visit the site below.

http://www.rarecancers.org.au/

I Want A New Drug

Today I signed up to a Phase 1 clinical trial using the immunotherapy drug, AK104. AK104 is a ‘frontier’ immunotherapy drug, straight out of the lab, from mice to humans. It has not been used on humans before and its effects are unknown. The purpose of the trial is to find out what those effects are, what dosage humans can tolerate and how effective it can be against various cancers.

AK104 is a dual action drug, in that it boosts the immune system in two ways, unlike all other immunotherapy drugs at the moment which only have one action. Its designed to act similarly to Keytruda and Opdivo, both highly fancied immunotherapy drugs and Yervoy, another immunotherapy drug that has been used successfully against mesothelioma. Trials have shown that when drugs like Opdivo and Yervoy are used together, the results are even more impressive that when used individually. Hopefully AK104 will capitalise on this synergistic relationship. My oncologist has said preliminary data from this trial has shown good results for mesothelioma.

Having said that, even fancied drugs like Keytruda and Yervoy are only effective in 10-20% of mesothelioma patients. The odds are that AK104 will be similar. So my hopes are not high, but it is really my only chance of gaining some long term (relatively) stability with this disease.

The trial will run for 52 weeks (depending on my tolerance to the drug) with fortnightly infusions of AK104. There will be numerous blood tests, biopsies and scans along the way. Depending on my results, there is a possibility of another 52 weeks of treatment. This is going to force me to lay low for a while. I started back at work this week and I may have to reassess that when I start the trial.

These drugs are not cheap, a year’s supply of Keytruda would cost me around $80,000, AK104, being a non-commercial drug would probably cost even more. However, all costs are covered by the clinical trial sponsors. This is a great relief for me as I was looking at starting treatment with Keytruda.

So here goes. I do not know what to expect. I’ll let you know when I find out myself. I’ll have what Huey Lewis wants.

I Want A New Drug – Huey Lewis and the News

Here I go again

Its been 4 months since I finished my last round of chemo and 3 months since I last updated my condition. This week I had a scan to check on how things have been going. It was a mixture of good and not so good news.

I was expecting my tumours to have regrown, I knew they had. Yep, sure enough, they had grown back to more or less their original size. One slightly smaller and one slightly larger than original. That was the not so good news. The good news is that result was the best I could have really hoped for. It gives me another shot at knocking the suckers on the head again. This is becoming a game of “whack-a-mole”. So after 16 months, its back to square one for me. Fortunately the cancer has yet to cause any harm to me and I hope to keep it that way. It’s just the treatment I have to contend with.

I met with my oncologist this morning and we have discussed my options. First, they will try and get me on to a Phase 1 immunotherapy clinical trial. Phase 1 trials are the start of longer term trials, so its difficult to predict what the outcome will be at this stage.

After the trial (or if I don’t get on a trial), I will commence some radiotherapy to try and shrink the tumours before hitting them with more chemotherapy (Vinorelbine). I then have the option using Keytruda, a promising immunotherapy drug. Unfortunately, Keytruda is not on the PBS scheme (it is for several other cancers), so I will have to fund that myself. $8000 every 3 weeks up to a max of $60,000, then about $1000-2000 every 3 weeks from then on. I hope I don’t have to fork that type of cash out.

Its back to work next week (after 16 months off). I’m returning 2 days a week at this stage. My workplace has found me some duties that are not mission-critical, so if I need some time off, the place won’t fall down. They have also offered me the option of working from home occasionally. They have been great and I look forward to seeing everyone again.

I’m fairly confident this year will be similar to last year. the tumours will grow, I’ll knock them on the head again and wrestle with the chemotherapy demons, but generally be able to live a more or less normal life.

One from the vault today. “Fight’ by The Cure. Rather macabre-looking video, but totally inspiring lyrics.

Sometimes there’s nothing to feel
Sometimes there’s nothing to hold
Sometimes there’s no time to run away
Sometimes you just feel so old

The times it hurts when you cry
The times it hurts just to breathe
And then it all seems like there’s no-one left
And all you want is to sleep

Fight fight fight
Just push it away
Fight fight fight
Just push until it breaks
Fight fight fight
Don’t cry at the pain
Fight fight fight
Or watch yourself burn again
Fight fight fight
Don’t howl like a dog
Fight fight
Just fill up the sky
Fight fight fight
Fight til you drop
Fight fight fight
And never never
Never stop

Fight fight fight
Fight fight fight

So when the hurting starts
And when the nightmares begin
Remember you can fill up the sky
You don’t have to give in
You don’t have to give in

Never give in
Never give in
Never give in

 

Flying Away

Since Rod’s last chemo treatment at the end of September and our son Lachlan’s wedding in October, Rod and I again got itchy feet and decided more travel is in order.

This time it started with a band. Rod has always liked The Dead Kennedy’s, a ’70s punk rock band from the USA. They came to Australia for a little tour but weren’t coming to Perth. This meant (of course!) a trip to Melbourne for us to see the band!

Since we were going cross country, we thought we’d make an adventure of it by hiring a car and driving up to the Hunter Valley, one of Australia’s wine regions we hadn’t been to. As a child I lived in the area with my parents and sister, but it was a short lived 2 years and I was a short-stuff kid of 8-10 years, so naturally hadn’t known about the developing local wineries. These days, there is a lot on offer in the lovely Hunter Valley, so we were excited about making this trip.

To round out the trip, we contacted friends in Melbourne to arrange our catchups, more friends in Canberra who invited us to stay, more friends who live in the Hunter Valley (who also kindly invited us to stay), and yet more friends in Sydney who invited us to stay over on our last night before flying home. This trip meant I spent lovely time with some of my oldest (longest serving!) friends who date back to my childhood – Carolyn and Linda from my school days in Malaysia, Jacqui from our teen years, and Gerry from my days as a new mum in my 20s, so this was a really lovely trip for me in particular, in many ways. Keep your good friends through the years; these are the people that help create fun times, joy and some of life’s best memories!

Arriving in Melbourne for the weekend, Jacqui and Greg had planned a special extravaganza dinner at their beautiful home as a surprise birthday dinner for their visiting friends from the UK, and had insisted that we come along to join in. This meant getting dressed to the nines in black tie and cocktail outfits and being sumptuously wined and dined with a custom menu of fresh, local and indigenous ingredients and delicious wines. What a fabulous night!

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We spent a lovely warm evening enjoying the sights and tastes of South Bank with Caz & Andrew’s company, even being surprised with fireworks over the river since it was spring racing carnival in Melbourne.

The band were good fun, we managed to scored a great table at the balcony overlooking the stage, front and centre. Although I wasn’t familiar with most of the songs (I think I’d listened to one of them from Rod’s playlist once) and couldn’t hear the words through the volume, I really enjoyed watching a bunch of young people throwing themselves about (literally!) in the mosh pit. We can add that to the huge list of bands we’ve seen together over the years.

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Collecting our hire car the next morning, we realised it was Melbourne Cup day and that was a bonus for us because the streets were all deserted and we could escape the city without any stress.

Unfortunately our friends in Canberra had a setback with Sue being in hospital when we arrived, but we still managed to visit and reminisce about our shared experience living in a French village. Thankfully Sue is now out of hospital and on the road to recovery.

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Then it was Hunter Valley time. The region is really easy to get to, being only about 1.5 – 2 hrs north of Sydney and the only traffic hassle was getting past the outer suburbs of Sydney itself. Once we arrived, we found lots of small towns from the coal mining days that are all fairly close to each other, along with lots of lovely wineries, gourmet foodie places and quaint galleries, stores and pubs. Linda and Ken were amazing hosts, putting us up for 4 days in their breathtaking rural property, taking us out to dinner with their friends and around to some of the best wineries for leisurely tastings. We visited Newcastle and checked out our old family house in Woodberry.

While there, we also took the opportunity to try something I’ve wanted to do for years – ballooning!

Ballooning always happens at dawn which isn’t just for fun, it turns out that is the optimum time of day where the air temperature differs enough from the ground temperature to allow the pilots to fly the balloons. The pilots are pretty good too – ours managed one of the largest balloons that flies in Australia with a basket of 24 passengers, manoeuvred us up and down to various heights to get great views of everything, and then landed us right on target and very very gently in a field at the end. After helping to pack up the balloon, we were taken to Petersons winery for a champagne breakfast, a perfect finish on a stunning spring morning. It was definitely worth getting up before 4am for this experience!

Our last leg of the trip was then a relaxing drive back to Sydney to enjoy a night in Little Bay with Gerry and Bob, with time for a little explore before flying home. We took Scruffy the dog for a nice walk along the Mosman Bay area then enjoyed a yummy fish & chip picnic under the Sydney Harbour Bridge, while looking across to the Sydney Opera House. It was another stunning spring day and a lovely way to end our trip.

Thank you to all our wonderful friends who offered us such amazing hospitality – it was a really great holiday!

 

Goodbye Norma

Just before Christmas we lost another friend and mesothelioma sufferer, Norma. She was a cornerstone of our local support group, who aim to meet up for morning tea each month. Norma had been a long term survivor of this disease, almost but not quite making it to the six year mark since she was diagnosed. She welcomed and helped support both of us in her gentle, caring way when Rod was first diagnosed, as she did with many others. It will be a very sad day on Monday when we go to say our goodbyes.

Rest in peace Norma Ryan.

 

The Perth based mesothelioma support group is run by a Western Australian organisation called Reflections Through Reality.