Changing the face of lung cancer

06B-DavidTomorrow is World Cancer Day. The Lung Foundation are launching a campaign called Changing the face of lung cancer. The aim is to increase awareness, reduce stigma, and encourage people to understand the importance of recognising symptoms to aid in early detection. Along with a number of others, I’ve been asked to share my story. You can view it here. Let me encourage you to read each of the stories on this site. When it comes to reporting on cancer, so often we simply hear the statistics. Well, every statistic is a precious life that matters to God, to family, and to many others. You will meet many wonderful people as you read through their stories.

Distressingly desensitised

lung_cancer_awarenessI headed to the chemo ward last week, much the same as any other week. But there was a difference—it wasn’t my week for treatment. I was visiting a friend who was having chemo for the first time and I figured he’d like some support.

As I drove to the hospital I became distressed. Not because I was heading to my least favourite place in the universe. Not because my friend had cancer. Not because he was only 17 years of age.

I was upset that the whole experience seemed normal. It seemed okay to be visiting a boy with cancer. I wasn’t shocked or horrified that this should be happening to someone so young and fit, who had their whole life ahead of them. There were no cries or tears or anger. I realised that cancer had become normalised for me. And I hated that fact.

There is nothing normal or acceptable about cancer. It’s a blight. It’s a parasite. It feeds on life. It steals life. It destroys life.

Dear God, please fix my blurred vision to see things for what they truly are. May I not grow desensitised to disease and suffering and death. May I not grow blasé to the horrors of cancer. Enable me to weep with those who weep. Fill my heart with compassion and kindness. Strengthen my hope in your saving grace and lead me to share this with others.

When Cancer Interrupts

when-cancer-interrupts-1Books on cancer—I tend to buy them, read them, and subject them to greater scrutiny than many other books. When Cancer Interrupts by David Powlison is more of an essay than a book, being only 20 pages in length. And this is one of it’s strengths. People facing such trauma as a cancer diagnosis are unlikely to settle down with anything that seems too heavy or unwieldy. Let me say at the outset that I am very encouraged and positive about this little book. But before I explain why, I need to express my only criticism and a plea to the author and publishers.

Please chop out the following sentences in the opening paragraph!

It is a bit like coming home after an evening out to discover your home broken into, every drawer ransacked, and your most treasured possession stolen. You feel betrayed. The enemy got inside.” (p3)

No it’s not! I’ve had the experience of having our house broken into a number of times. I’ve had my wedding ring stolen. I’ve had my motorcycle stolen. We’ve had treasured gifts to my wife stolen. But, with respect, this is nothing compared to being diagnosed with terminal cancer. This illustration trivialises the impact of being told that your life is now effectively over. Life is not equal to stuff.

Take out these sentences and I’m engaged. You understand my plight. You sympathise with my fears. You invite me to journey with you in your book.

Personally, I don’t think you need any metaphor. Just tell it like it is. You’ve been through it four times. Wow!

Having got that off my chest, let me say how wonderful this booklet is. I’d make this a go to book in ministering among those with cancer and their carers. In fact, I’d love it to be available online as a free pdf to get it out there as easily as possible (I had to order my copy from the USA).

Powlison brings comfort and hope by pointing his readers to the beautiful words of Scripture. I found myself saying “Yes. Yes. Yes.” as he quotes the words of the Spirit.

God is our refuge and strength,
    a very present help in trouble.
Therefore we will not fear though the earth gives way.
(Psalm 46:1-2)

He has said, “I will never leave you nor forsake you.”
(Hebrews 13:5)

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.
(Psalm 23:4)

When Cancer Interrupts takes us on a journey from fear to faith. It sympathises with our troubles; understands our uncertainties, pain, and fears; recognises our questions; identifies with our loss; feels our vulnerability; and calls us to acknowledge our struggles.

We are reminded that God is always with us and he invites us to cry out our troubles to him. He listens and cares. Rather than God being absent in the face of a serious cancer diagnosis, he remains close. God is the rock solid constant. He calls us to live out our faith in the midst of our fears. While we benefit so greatly from the love and support of close family and friends, Christ walks closely with us even through the valley of the shadow of death. He will stay with us even when and where others cannot.

Powlison calls us to cling to Christ by faith when we face the trials of cancer. I found the following words to be especially helpful and wise.

If your faith does not come to life in your weakness and need, then fear and false hopes take over. “I’m deathly afraid” and “I can beat this” are evil twins. On the one hand, fear bullies you into putting your ultimate hope in something that’s never good enough—doctors, percentages, treatments, a cure, strategies for self-healing, keeping yourself busy, self-numbing. On the other hand, pride and self-trust seduce you into thinking that you don’t need to be afraid, that faith is a crutch for weak people, and that you can be stronger than cancer and stronger than the shadow of death. (p14)

I find this to be so true. People speak of battling cancer, struggling against cancer, fighting the cancer. They’re admired for their strength, for being champions. And sadly we also describe losing the battle or giving up the fight. Why can’t we be allowed to acknowledge our weakness, our needs, our frailty, our dependence of people, medicine, circumstances outside our control, and ultimately our need for God.

This is not a self-centred or self-help book. It takes us to God, invites us to rest in him, and shows how we can reach out, even in our sickness, with love for others. Little things can make such a difference. And God is in the business of working his strength through our weaknesses.

If we don’t know the love of God in Jesus Christ, then this book points us to the source of life and hope. If we do know him, then we are called to come to him in our times of need.

David Powlison, thank you for writing this little book.

Please put Crizotnib on the PBS. Please!

This an edited version of a letter my wife, Fiona, sent to support an application to the Therapeutic Goods Association (TGA) to ask them to please put Crizotnib (Xalkori) on the Pharmaceutical Benefits Scheme (PBS). This drug has proven results and yet is virtually unaffordable to all, at $7400 per month.

I understand you are collecting letters of support for Crizotinib being accepted on PBS. I’m not sure if TGA read submissions from individuals, but here goes…

This is not a scientific submission, but more a letter from one family suffering through a family member having ALK+ lung cancer. Whilst the TGA doesn’t court letters of submission from patients, this is an attempt to explain how TGA decisions affect individual families.

My perfectly well husband presented with a pleural effusion in Dec 11, being diagnosed with ALK+ lung cancer. He missed getting on the Crizotinib trial, because by the time we got the result, he had already received his first cycle of carboplatinum, alimta, and avastin, thus making him ineligible for the trial.
I chose this combination over what was being offered by the PBS (and our oncologist) at the time—Carbo/Docetaxel—because international research seemed to suggest it was more effective and had less severe side effects for general lung cancers.

My understanding when I spoke to the TGA a couple of years ago, was that the testing for ALK had to be passed by MSAC, with Crizotinib going before PBAC at the same time, before the TGA could consider putting Crizotinib on the PBS. My understanding is that both MSAC and PBAC have again deferred decisions as of Nov 2013. At that point they were struggling to understand who to allow ALK testing for.

As a carer for her non-smoking 49 year old Aussie husband it was pretty obvious to me, especially when he came back EGFR negative, that we should ask for and pay for the ALK test.

Looking through the ‘ALK+ roll call’ discussions on http://www.inspire.com it’s still obvious to me who should get tested for ALK. They are all younger non-smokers, who present late with stage 4 metastatic symptoms, because the original is on the periphery, not in the bronchi like standard smoking cancers. There are also histological features which are more suggestive of ALK—signet ring or acinar histology.

Our pathologist noted these on David’s histology, alerting the thoracic surgeon that this was unusual for standard lung cancer, and that maybe there was something else going on.

Surely it’s not too hard to offer ALK testing as a priority to patients in this category.

I’ve also heard that there’s new testing becoming available, which will be much cheaper, quicker, and give more of an idea as to whom to send for the more expensive testing. Hopefully, this will be commonplace soon.

In 2014, about 11550 Australians are expected to be diagnosed with lung cancer. Approximately 15-20%, or roughly 2000 people, will be non-smokers with a genetic mutation. Of these approximately 3-4 %, or 35 people, will be ALK+.

The Inspire roll call only found about 10, but obviously not everyone reads or visits http://www.inspire.com, and nor is everyone connected via a clinical trial.

We do not know of any other ALK+ patients in Canberra, but then oncologists don’t share patient information. There hasn’t been anyone else with this mutation coming to the lung cancer support group at Canberra Hospital.

But then again, how many are being tested, or not tested because of financial reasons?

I’ve just referred a younger,  unusual, possible lung cancer patient to Canberra Hospital in this last week, and I’ll be willing to find money for him through my workplace or the Eden-Monaro Cancer Support Group, if need be, because he couldn’t necessarily afford the money for testing.

As stated earlier, my understanding was that PBS approval for Crizotnib was again deferred in Nov 2013. This seemed more due to semantics than actual proof that Crizotinib did or didn’t work, or the cost-benefits of approval.

Even for intelligent people in the medical profession, it is difficult to read and understand the documents deferring approval. To read that PFS has shown ‘statistical improvement’ is hugely exciting. But to read ‘that OS hasn’t been demonstrated’—how does one prove that, except by time and death?

As a carer it’s also hard to read the statistics of overall survival and progression free survival without taking it personally. These statistics are talking about the future of my husband. He can’t read them without being overwhelmed, even though he’s been outside the statistics thus far.

It shouldn’t be up  to the patients and carers to have to trawl through these statistics to prove to the government that life is worth living, that some good quality of life is better than life cut short for lack of funding for medication that works, even if just for a limited time.

My husband has responded miraculously to an Alimta/Avastin combo for over 40 cycles, being NED for nearly a year and a half now. These treatments have cost us very large sums of money. Avastin isn’t on the standard guidelines treatment plan and the study on the benefits of adding Avastin to Alimta has not yet been released. Given that this combination has worked for my husband, he continues to endure the physical impact and financial costs until there is definitive proof that it doesn’t help.

But, we still need Crizotinib to be placed on the PBS list. Please consider the following…

1. The demand of  3 weekly cycles is hard. It’s hard for my husband to psyche himself to go to the hospital every 3 weeks to pump poison into his veins, knowing that its going to make him sick for the next week, often spending 3 or 4 days in bed. Not that the following 2 weeks till the next cycle are easy, with fatigue, headache, GIT upset, mouth/tongue ulceration, pain, acne, skin rash, itch, and more.

From early on he’s had to add in Cymbalta for peripheral neuropathy, increasing amounts of antihypertensive, pain relief, antinauseants, dexamethasone, folic acid, Vitamin B12 injections, etc.

Do they consider the cost effectiveness of paying for medications to deal with the side effects of ‘standard chemo treatment’? There is also the cost of the private chemo ward every 3 weeks.
Because Alimta or Avastin weren’t on PBS when he started, all treatment had to be done through a private hospital.

How much simpler it would be—physically, mentally, emotionally, financially—if my husband had been able to simply take a Crizotnib tablet twice a day.

2. Unfortunately chemo brain is a real phenomenon too (as is carer’s brain). His memory isn’t as good as it was, and nor is mine. The 3 weekly cycles take a toll on all our family, including the kids.

3. Furthermore, no one can tell us how long one can continue on maintenance therapy. When my husband was diagnosed, it was still being debated as to whether patients shoud go on maintenance therapy, whether it added anything. Fortunately that debate has been won and put to rest.

There are some in the USA, in the Inspire network, who’ve been on maintenance for longer than my husband (I think about 5-6 years is the longest). But how long can one continue to use non-targetted therapy, continually killing ordinary, healthy cells every 3 weeks, without doing some permanent harm, perhaps even causing further cancer. There is no answer to that question yet.

4. He’s worked part time since mid 2012, returning to full time work this year. He’s continued to pay taxes since his diagnosis, using sick leave and long service leave until returning to work, paying his taxes at the same rate as prediagnosis.

I’ve had to work more, to pay for the chemo, so now I pay even more tax. We have never applied for Centrelink help, or been able to because of our income. I understand that even the Centrelink payments are being tightened up, it has to be proven that you’ll die within 2 years, when all you really want to do is prove them wrong and keep living. Having not asked the government for help with living, are we also to be denied the cost of medication by the same government as we continue both to live and pay for medication, and pay taxes?

Has the cost benefit analysis been done on how I and my 4 children would have coped with me as a widow and them fatherless?

I’ve been willing to pay the cost of initial chemo and maintenance chemo, as opposed to what the PBS would have given us for free, because I think the cost benefit analysis of having a husband who’s alive has been worth it. But not everyone is as fortunate financially or with such generous friends or workplaces, who’ve supported us through the financial impact.

5. We’ve always been told he could go to Crizotinib once the Alimta/Avastin failed. It’s always been his next step. But it’s extraordinarily expensive, at $7400 month, now it’s off the special access scheme. Suddenly our next step is unsure.

6. Access to trials isn’t a certainty, as we’ve already experienced.
Nor is it without cost, as ALK+ Australian patients have moved cities to be able to access the trials in the few major centres that are offering them. Had we gained access to the initial phase 3 Crizotinib trial, we would have had to travel to either Melbourne or Sydney.

7. Highly regarded world class experts in the field of ALK+ Adenocarcinoma, including an Australian, recommend first line Crizotinib. The latest “Up to Date”, does so: http://www.uptodate.com/contents/anaplastic-lymphoma-kinase-alk-fusion-oncogene-positive-non-small-cell-lung-cancer
How can doctors follow recommended international guidelines, if the Australian PBS is still years behind?

It’s quite distressing to me to have to be writing this submission in support of Crizotinib, when I wrote a very similar submission (a begging letter really) almost two years ago. Nothing has changed in Australia, in those years. Except more friends, colleagues, patients have died of lung cancer.

Lung cancer continues to be one of Australia’s biggest killer. Crizotinib has been approved as first or second line therapy in so many countries throughout the world. It is normal in other countries, but for some reason we continue to drag the chain on best-practice care.

In the USA the FDA has now approved the second generation targetted therapies for ALK+ patients, both as initial and as second line treatments. We haven’t even got the first generation treatment approved as yet.

It is so frustrating that Australia is lagging so far behind. Bureaucracy seems to be holding us back unnecessarily. The irony is that Australians have been been benefitting from Crizotinib, at least since the phase 3 trial initiated in 2011.
Pfizer have been generously supplying both patients on the trials, and allowing patients to access the medication via the special access scheme until 30/6/14, when such access ceased.

Since that date, there have been at least two patients who’ve signed up to the Inspire Australian roll call for ALK+ patients who are struggling to how they can possibly afford $7, 400 per month. We should not be a country that only provides quality health care to the wealthy.

It’s enough being confronted with advanced lung cancer at a young age, let alone being faced with an unaffordable financial bill.

How many more people are either not being tested or not being treated because of financially prohibitive costs?

We can’t blame the drug company for trying to recoup some of their costs, when the Australian government has benefitted from their provision of the drug via trials and a special access scheme for two and a half years.

With the new trials investigating LDK378 initiation in both Crizotinib resistant and naïve patients in Australia, isn’t it time that Crizotinib is given government recognition for it’s important place in the treatment pathways?

Chemotherapy isn’t a one size fits all. As proven, Alimta/Avastin chemo has been a God-given, proven-thus-far combination for my husband. But it hasn’t worked for others.

Crizotinib has worked amazingly for some, but some have had resistance develop fairly quickly. The second generation targeted drugs will no doubt have similar success and failure stories. But that doesn’t mean people should be denied access to them if they can’t afford to obtain them privately.

What is obvious was that the older, cheaper drugs like Docetaxel were failures in PFS, OS, quality of life and every parameter you can think to measure them by, but they’re still held up as the ‘gold standard’ of treatment, by which to compare newer medications which aren’t designed to act it the same way, so shouldn’t be compared. This is ludicrous.

I hope this helps the application for Crizotnib to be place on the PBS.

Yours sincerely

Dr Fiona McDonald  (MB BS)

Song of the heart

Ben_MaccaMy good friend, Ben Lattimore, has written this Song for Macca as he reflected on a post I wrote some time back called What caused the cancer? My journey with cancer has been shared since the very beginning by Ben and his wife Beth. They were heading to Darwin with us. We shared shipping containers. [The photo was taken only days before being admitted to hospital – I don’t look well!] Our decision not to go became their decision. Ben had been planning to work with me as a ministry apprentice. The ‘Latts’ were planning to be an integral part of our church planting team up in the Northern Territory. 18 months ago we sat in a hospital visitors’ room and talked with the Latts and the Rademakers about undoing our plans.

This song tells of the greater problem within. Not the cancer, but a problem of the heart, a problem we all need to identify, and a problem that God has acted to overcome. Here are the lyrics and you can listen to Ben perform this song, by clicking the attached link: Song for Macca.

Song for Macca
Ben Lattimore

There’s a problem deep inside of me
it’s been there since the start
cancer of the lung is not my greatest ill:
there’s a deeper, greater problem
with my heart.

You won’t find it any book on medicine
there’s no test to prove it’s there
but when you start to take a look around
the symptoms are everywhere.

Oh my heart, my heart of stone
it wants to rule me
and make the world my own
oh my heart, heart of stone
well it severs every chord to the one
who I owe all things
and all things will be taken away.

Before you get to taking pity on me
would you take a look around
and an honest look at your own heart
and tell me what you found?

Oh the heart, the heart of stone
it wants to rule you
and make the world your own
oh the heart, the heart of stone
well it severs every chord to the one
who you owe all things
and all things will be taken away.

What hope is there for the heart of stone?
What hope is there for the heart of stone?
He must come and change, come and change…

Change the heart, the heart of stone
it wants to rule you
and make the world your own
but the heart, the heart of stone
can be remade into a heart of flesh
that he can call his home
and all things will be promised
and given unto you.

As my body fades I’m thankful
for I was always on this line
but now I carry this reminder in my flesh
I can’t forget the problem we all share.

Good news

firstI’ve been overwhelmed by the encouragement I’ve received over the past couple of days. Since posting about my wonderful scan results I’ve received so many Facebook, email, phone, and face to face greetings. So many have expressed their gratitude to God for his kindness.

On Thursday I was able to speak to the Brumbies after they were presented with their jerseys at the Captain’s run. They encouraged me with their enthusiasm for my news. Some shared my thanks to God and others simply expressed what @#%! great news it was. Each in their own way!

I also had the privilege of sharing my news at church yesterday morning. One person tearfully hugged me, saying their family had prayed for me every day of the past eighteen months. This is very humbling. I didn’t deserve it, but so many have pleaded with God for my healing. One little boy was so excited to hear my news that he’d told his school principal! Some hugged me so strongly I was worried my weak lung might cave in!

Last night I spoke of my excellent medical outcomes again. I was introduced with the words: ‘Macca has some great news to tell us.’ It hit me that I should share the best news I have. So I did. I spoke of the news that around 2000 years ago, Jesus died by crucifixion and then rose from the dead, so that all who trust him could have hope of new life for eternity. This is by far the greatest news. And then I spoke of my scan results, and people clapped.

Let me remind you that my hope is not ultimately in NED or remission or cure. My hope is beyond cure. It’s in the news that matters most:

Now, brothers and sisters, I want to remind you of the gospel I preached to you, which you received and on which you have taken your stand. By this gospel you are saved, if you hold firmly to the word I preached to you. Otherwise, you have believed in vain. For what I received I passed on to you as of first importance: that Christ died for our sins according to the Scriptures, that he was buried, that he was raised on the third day according to the Scriptures.  (1 Corinthians 15:1-4 NIV)

Amazing scan results NED

Dave & Fiona‘No evidence of neoplasm.’

This was the final sentence of the radiologist’s report on my CT scan from Tuesday. I went straight to wikipedia. Neoplasm wasn’t a word I’d been using. And my guess was right. There was no evidence of a tumour. Seriously? I don’t think I ever expected to read that. No evidence of cancer? I was stunned.

It’s exactly eighteen months this weekend since I was admitted to hospital, had my first CT scan, and discovered the tumour on my lung. It was about 24mm at the time. I’ve had two surgeries, twenty six courses of chemotherapy, and a number of CTs in this period. We’ve seen the tumour increase slightly to 26mm, then reduced to 18mm, to 12mm, and to 7mm in February this year. It went from a golf ball, to a pinball, to a marble, to a pea. A friend was praying it would shrink to a mustard seed next! Seems like it has. Whatever may or may not be there is too small to be seen by a CT scan. 🙂

We’ve discussed this with a couple of oncologists now. They were both amazed by how things have gone. My regular oncologist, who is very careful and conservative, kept saying this doesn’t normally happen with my type of cancer. I told him I was quite happy to be abnormal! Both oncologists have stated the importance of continuing with the chemo for now. The tumour is not evident on the CT scan, and this is a great outcome, but it doesn’t guarantee that I am cancer free. Cancer cells are microscopic. They could be anywhere and everywhere without having developed an observable tumour. The fact that my cancer was discovered at Stage 4 once it had already spread, and that cancer cells were discovered in other places, is a reminder not to make assumptions.

This scan result is the best result I could have received. To be described as N.E.D. – No Evidence of Disease – is a wonderful result. But it carries with it a huge amount of uncertainty. It’s like the results of a satellite image of a national park revealing no evidence of an escaped criminal. Higher resolution would be needed to gain more certainty. But even then he could be hiding behind a rock or under a tree and not observable. They cannot be sure with me. Even surgery, biopsies, and other types of scans have their limitations. They can identify cancer, but they can’t rule out it’s existence.

Our plan is for me to continue with chemo for a while and ask more questions. We’ll seek advice about other options for assessing how I’m going. We’ll seek to monitor the toxic and damaging impact of chemo. It’s clearly been the recipe for attacking my adenocarcenoma, but it’s leaving its mark on my body as well. I’m experiencing some neuropathic symptoms again, energy levels are low, fitness is harder to maintain, and I’m on medication to counteract significant side effects.

In short, the journey with cancer continues. In some ways I expect it will be harder. Until now I’ve had certainty. I’ve been sure of having cancer because I’ve seen the evidence. Now the evidence isn’t there. I assume there is still cancer present, and will act accordingly, but I can’t be sure.

My scan results are great news and I’m filled with gratitude to God for bringing me to this point. I thank you for your love, support and prayers. God has been listening and answering our prayers. He’s been kindly giving me time and opportunity to serve him. I’ve been praying since early last year that I would get to see Matt married and that I would get to be a grandfather. [I didn’t tell them this!] There’s now four weeks until Matt and Elizabeth get married and Luke and Sharon are halfway through their pregnancy. God willing, Fiona and I will also celebrate thirty years of marriage this year. Awesome. Thank you God for the days that you give me!

God has done a lot of work in me over this past eighteen months. In particular, he’s been strengthening my hope. Not hope in a cure necessarily, but a hope beyond cure. Hope that gives me reason to live, however many days I might have. Hope in life now and in eternity. Hope that is real even if cancer should one day overrun my body. Hope that sustains me through the ups and the downs. Hope grounded in God keeping his promises in Jesus Christ. My desire is for each one of you to know this hope. God is good.

Thank you again for your friendship, support, help, and generosity. As we continue this journey please rejoice with us and please keep on praying that God will remove all traces of cancer from my body. Please pray for wisdom for the medical specialists and for us as we decide what paths to take.

Macca