After about 6 weeks of no treatment, I start on two new treatment regimens today. I will start on 3 weekly cycle of doses of carboplatin (week 1), followed by gemcitabine (week 2) and week 3 off. Repeat for 18 weeks. Depending on the outcome, I may continue gemcitabine indefinitely. I’ve tolerated chemotherapy very well, so I don’t anticipate too much drama there. More radiotherapy is also on the list. I will start 10 days of radiotherapy to BOTH of my large tumours immediately after I finish my first dose of chemotherapy.
I was looking forward to my time with no treatment, but after about 2 weeks I came down with a head cold that clogged my sinuses and eventually worked its way down my chest. This cold aggravated the cough I already had and after 4 weeks I still have not got rid of it. The cough is due to one of my tumours pressing against the cough centre in my chest, irritating it and causing me to cough quite violently. If I sit or lay still, I’m ok, but any change in posture triggers off a coughing fit.
I hope the combination of cold, cough, chemotherapy and radiotherapy will not be too much to handle. I suspect it will as the cold and cough are tough already. I am excited about the radiotherapy as it has delivered the biggest knockout blow to my tumours out of all my treatments. My last bout of radiotherapy was in October 2019, 18 months ago. It only targeted the smaller tumour and shrunk it by 40%. It has struggled to regrow since then and has only just reached its diagnosis size. The larger tumour received some collateral radiation and it too shrunk a significant amount but regrew back quickly.
Both tumours will be hit with radiotherapy, ten exposures over 10 days, 50% dose for the previously radiated tumour. I had few side-effects last time. Some redness in the skin and a cough that lasted about 3 weeks. Hopefully, that will be all again, this time around. My oncologist has been reluctant to suggest radiotherapy. I’m not sure why, as my radiation oncologist seems to be quite confident of knocking these tumours on the head for another 12 months at least. I hope he is right.
I also had a biopsy done on one of my tumours to determine the genetic profile of the tumour. This is a part of the Molecular Screening and Therapeutic trials (MoST). MoST attempts to identify specific genetic markers/mutations in the cells of the tumours that may be targeted by experimental treatments. There is a small chance (30%) of finding something to target, but for those lucky enough to have targetable tumours, there have been some particularly good outcomes.
It will take 6-8 weeks for the analysis to be done. If I am lucky to have something to target, then I will have that treatment option up my sleeve. Hopefully, radiotherapy will allow me to keep this option for a while yet.
My last week have been a bit intense. I’m feeling a bit exhausted.
So, as I mentioned in the last blog, I regularly get into a mental state of doom and gloom about my lack of options and imminent demise, only to have something (treatment) popup that will carry me through for the next 12 months. I am confident this will again be the case. Bring it on.
Enjoy Kate Bush’s symphony – Breathing. Not quite about radiation therapy though.
I feel a bit lost at the moment. The last few weeks I have felt physically better than any other time in the last 3 years. This is due to the fact that I am now enjoying a break from all types of treatment for at least 4 weeks. Twelve months of chemo has kept me physically subdued, but now the shackles are off and I’m able to function normally (almost). However I’m lost because the reason I’m not on chemo is because it stopped working. My tumours have started to regrow and are now bigger than they have ever been. I also have a small tumour growing in my left lung. I’m not really concerned about that as it has been there a while, but is slow growing. My biggest concern is that I am running out of treatment options. My oncologist is currently reviewing what these options are.
They may include more chemotherapy. I will be on to my 4th and 5th types of chemotherapy if I start. Unfortunately, data shows that one should expect a diminishing return on successive chemotherapy treatments. Fortunately, in my experience I have enjoyed increasing returns on my 1st, 2nd and 3rd chemotherapies. However, I am pragmatic enough to know that doesn’t mean anything (much) at this stage.
I may be able to undergo more radiotherapy. My last dose of radiotherapy targeted one of the tumours and knocked it out of the park for 12 months. It struggled to grow much in that time. More radiotherapy may do the same with the other tumour. However I have been warned that radiotherapy will only target a portion of my tumour load and that I shouldn’t expect dramatic change.
I have also been back at Linear Medical Research and I am now being tested for suitability to join another clinical trial. This involved conducting a genetic scan and identify known mutations in the tumour cells that respond to specific treatments. It’s a phase I clinical trial which has no data yet on the effectiveness of the treatment.
I may be able to participate in all three of these treatments in the future, or maybe just one of them. This is the thing that pisses me off about mesothelioma. Apart from my first round of chemotherapy, all my treatment has been experimental. There is no data on their effectiveness and no guarantees of success. All my options have been a guess. Fortunately my last two treatments have worked well for the last two years, much better and for longer than anyone would have predicted. Hopefully the same will be said about my next choice of treatment.
Should these three options prove unsuccessful, then that is it for me at this stage. There may be other clinical trials I could join, but at the moment there is nothing on the horizon. With no treatment, my tumours will continue to grow. Fortunately they are slow growing, but now are quite large. How large they can get before damage is done is unknown.
I have been in this mood a couple of times in the past. During those times I have feared my time is up as my tumours were growing and treatment options were few. I couldn’t see past the next few months. Then I start a new treatment and all is good for the next 12 months. I have my fingers crossed that this pattern will continue.
I am well passed my expiry date for this disease and consider myself fortunate that I have been able to access so many different types of treatment and that I have responded quite well to most of them. I was saddened to hear of the passing of a fellow mesothelioma sufferer this week. Gary De Boynton was diagnosed in September 2018 ( a year after me), but sadly passed away this week. Rest in peace Gary.
I was also saddened by the passing of the grandson of one of Paige’s friends. The little fellow was only 7 months old and had spent all his life in hospital fighting congenital problems. Poor tyke never got a chance at life at all. It hit me hard, as my own grandson, who is 18 months old, has also spent the last few days in hospital fighting a viral infection. The sight of a sick infant in a hospital bed with tubes and other accessories really pulls at the heart strings. It makes all our complaints seem insignificant. It does for me as I got my chance in life and made the most of it. It will end a bit short of what I expected, but that is life.
But life it is and it is still going on, so I plan to be a part of it. I’ll pick one of these treatments and see what numbers fall. In the meantime, I will continue to do what I have been doing.
My blogs were never written for my family and friends. When I was first diagnosed I was searching for stories about personal experiences with dealing with this cancer. There were many articles written by doctors and nurses and other care specialists, but very little about the personal experience. Mesothelioma was typically a rare “old man’s industrial disease” and that demographic doesn’t get on the Internet very much and blog about their personal life. I have read dozens of blogs from prostate, breast and skin cancer survivors. They talk about the wonderful advances in treatment, PBS subsidised wonder drugs, star studded charities and extensive tailor made support services. There’s a galaxy of personal blogs and libraries full of books about their stories. I even came across a “previvor” blog the other day. A “previvor” is apparently someone who is yet to be diagnosed with cancer but has been identified with a cancer causing gene. This woman was happily blogging about her pre-cancer survival life. But I digress. There is very little like that for mesothelioma patients. It is not a “sexy” cancer. Most mesothelioma patients and carers are on their own during their fight for life.
So, my blogs are directed at my fellow mesothelioma survivors. They are almost always positively spun. I want to show that although there is no light at the end of the tunnel, there can be light in the tunnel and for most of its length. I could talk about the negatives of my experience, but many are already living their own nightmare and don’t really want to hear about mine. I have learnt that the one key factor to putting up the good fight is to maintain a positive frame of mind. Lose that and the battle is lost.
Recently I have blogged about some significant positive events and experiences happening in our lives. My stories about them have attracted some comments which have led me to believe that some people may think that there isn’t a downside to our current life and that we are lucky to do the things we do or that there is something to envy about our lot in life. I suppose I am lucky that I am in a financial position to be able pursue some of these experiences. For many, a terminal cancer diagnosis leads to total financial devastation, on top of their physical and mental devastation. However, even my own good financial position has only come about because of my illness.
I know these comments are only products of the excitement surrounding my positive experiences. Under normal circumstances, who wouldn’t be jealous of a new boat or new house? I certainly would. But I think I may have given out the wrong impression to my readers, in that my life only involves; 1. Go to treatment. 2. Do some nice things. 3. Repeat 1, 2 and 3. Even I know that some of the experiences I write about are only superficial and manufactured and in the scheme of things, mean little to my life, but when your whole life is taken away from you, anything positive, no matter how contrived, superficial or manufactured it is, is welcomed. There are always genuine, organic, positive experiences involving family and friends. These are the experiences that create the memories, the memories that will live long after me.
There is a dark side that I have rarely hinted at. Most people think I am coping well with this disease. I certainly give that impression. They see me with my head bobbing above the water, boat in the background. Looks idyllic. They don’t see my arms and legs thrashing madly below, trying to keep me afloat, while the deep black abyss below is pulling me down. I have been in a cyclic depression for the last 3 years. Knowing that you are going to die sooner than later and possibly within months does not auger well for your mental health. I have survived mesothelioma for three years. To the statisticians, that is a mesothelioma survivor success story. To me, living for only 3-4 years after a diagnosis, is no success, especially when I am still 20 odd years short of the average life expectancy. I have had almost 30 CT scans over the last 3 years. Usually, I have to wait a few days before I see the doctor for my results. During that time the anxiety (“scanxiety”) sets in. Fortunately my scan results have always been “good” to “not so good”, but one day that will change and my doctor will tell me that “there is nothing more they can do”. I dread that moment, every time I have a scan, as I know that it WILL come up one day.
Having to retire from work prematurely may sound like fun, but it is another blow to my well-being (emotional and financial). So much of our lives has had to change. Plans that we had been working on for years went out the window. Planning for the future became a day-by-day process. Grandkids have started to arrive, but I despair that I will not be around long enough for them to remember me. All this is in addition to the devastation wreaked on Paige’s mental and personal well-being.
I have had over 80 chemotherapy and immunotherapy infusions and 100+ blood tests over the last three years. My veins in my arms have collapsed and the combined effects of the chemotherapy and immunotherapy have wreaked havoc on my body. The chemotherapy has left me with daily headaches, a constant cough, diarrhoea and constant painful burning neuropathy in my feet. Usually, I am battling all four of these in a futile attempt to get to sleep at night. I am constantly fatigued and listless. The immunotherapy resulted in my own immune system attacking my joints and cartilage, leaving nothing behind in my lower joints resulting in painful arthritic conditions. On top of all this, my overall body health is weak and poor. I feel like shit most days. I have lost a lot of strength in my muscles and fitness. I can walk about 200m before my feet are aching or I am out of breath. My daily drug intake is up to 14 tablets per day, most feeling like golf balls on the way down. I sit and stare at them, wishing they would just go away. It is not ever going to get better than this. It will only get worse.
But I can cope with all of this and have done so, so far. From other accounts, my physical condition is good. Treatment has actually been kind to me compared to others. But even all this is not close to the deep dark side to come.
I know cancer. I nursed my first wife through seven years of cancer. I saw how first the treatment ravaged her body and then the actual cancer took over and finished off anything left, physically and mentally. I saw and lived the emotional devastation in our family’s lives. A couple of years later I lived the same experience when my mother died from mesothelioma and a few years later, my father from prostate cancer.
I know cancer. I know how cancer kills. I know how cancer can literally rip a body apart. I know the sad bits. I know the scary bits. I know the gory bits. I know how it finishes. I know what lies ahead for me.
I have two very large tumours between my right lung and rib cage. One tumour is bursting through my rib cage. It will continue to grow, threatening to strangle vital nerves and blood vessels to my upper body (ie head). The close proximity to my ribs means that spread to my bones is likely. Then its all over. The other tumour is growing over my right lung, slowly smothering the lung. My lung capacity is diminishing over time. Eventually my right lung will stop working. If it spreads to nearby organs, heart, pancreas, liver, then once again it will be all over. When this will happen is anyone’s guess. But it will happen.
So you see, writing about the negatives doesn’t make for inspirational reading. Dwelling on the negatives doesn’t make for an inspirational life either. I felt really down after writing this. In the same way, writing about the positives, lifts me up. I find it cathartic. I might just be in denial, filling my life with positive experiences, making no room for the negatives. Please indulge me in letting me write about the good things happening in my life, knowing that there is a battle raging on underneath. I am not lucky, I’m not unlucky either. There are many who would be jealous of my position, but they are coming from a darker place than me (and you). It hasn’t been pleasant writing this, so you won’t be hearing anything more like this from me.
When I was first diagnosed, it was a very gloomy time. My doctor gave me 11 months to live, the same time it took my mother to succumb to her mesothelioma after her diagnosis 13 years earlier. For many months after, I just couldn’t be bothered doing anything. “What was the point?” I thought. “I’ll be dead in a few months”. I didn’t buy clothes, my phone needed replacement but I wasn’t about to start a new contract. I didn’t invest much time and energy in anything. I was just waiting to die.
After a while I realized I needed new clothes and my phone really did need replacing. This led me to ponder, I had just wasted about half my remaining life expectancy in a pall of gloom and depression. This frame of mind had not made my life any better, it had not cured my cancer and it wasn’t much fun at all, to me, or the people around me.
There has been a few times over the last three years, where I thought I would be gone in a few months time. This was mainly based on the rate of growth of my tumours at the time. But when the time to go came around, I was actually in the same, if not better place than I was a few months prior. This has reinforced the idea that if I sit around and wait to die, I would end up being disappointed with the outcome, ie. I just wasted months of my life waiting to die.
Time to change my mindset about this. At least with a positive mindset, my life would be better and more fun. It wouldn’t cure my cancer, but it might improve my life expectancy. Time to make some memories for those I will leave behind, time to celebrate life, family and friends.
From that time onwards, we have decided to live our life to the fullest. Not that we weren’t already doing that. A history of premature deaths in my family had already cemented in my mind the need to maximize enjoyment of life. We make short term plans but we also make long term plans. We make small plans and we make big plans. I was hesitant to buy the caravan at first, but in the end we got what we wanted out of it. When it came to the boat, there was no hesitation. Even after a couple of months ownership, we have made memories that will last a lifetime for everyone involved. So, what is our next BIG plan that I have tantalized you with in the last couple of blogs? It involves a caravan, a boat and an event that happened 12 months ago.
Twelve months ago, we decided to have a short caravan break in the seaside resort town of Mandurah, about 90km south of Perth. We loaded up our caravan and headed off for some much needed R&R between treatment. Mandurah has always been the favourite holiday destination for Perthites. It comprises a very large estuary that is separated from the Indian Ocean by a very thin strip of land. For our Marseillan friends in France, it is almost identical to the size and layout of L’Etang de Thau and the Mediterranean Sea. Mandurah is a popular fishing and crabbing destination. It has white sandy beaches and plenty of bars and restaurants.
While wandering the streets of main town one day, we were looking at real estate windows (as you do, when on holidays). Mandurah has many canal developments and we started to notice that these were quite cheap, much cheaper than I would have thought, about half of what I would have thought in fact. Housing has been in a slump in Western Australia for many years with places like Mandurah particularly vulnerable to the decline in real estate fortunes. Most of the canal frontage blocks were about the same price as an average outer suburban block in Perth.
Paige’s mind started ticking over. “We could buy one of these blocks and build a house for about the same value as our current house in Perth” she said. “Your joking” I thought. This was stretching the “BIG long term plan” philosophy a bit too far. This was looking ahead 12 to 18 months and considerable personal and financial investment. Not the sort of thing most people would engage with while battling a terminal illness. But over two years had passed by since my diagnosis at that point. If I had spent that time doing nothing, that would have been two years wasted. I don’t know how long I have left, it may be months, it may be years. If it is years, then the idea of building a house on the canals and enjoying what time remained started to sound appealing. I wasn’t about to sit around and wait to see if it would have been wise decision or not. If it is only months, then oh well, that is life. At least Paige will be able to live the dream for me.
After a bit more (a lot actually) prodding by Paige, we bought a canal block. I had been hesitant until she pointed out that we’d had our caravan fun, so we could sell that and I could put all the funds towards a boat. That got me hooked, who doesn’t want a boat? No point living on a seaside canal with no boat too! We were also realizing we needed a slightly bigger house with space for our growing family to visit, and this would give them some fun times too. We found a block with a jetty already constructed (a huge cost saving) and Paige negotiated hard to get it at a much lower price than advertised. We also concluded there was not much point in waiting for the house to be built before buying the boat. So out went the caravan and in came the boat.
We quickly engaged the services of a local architect, who specializes in canal homes and came up with a great, bespoke plan. It is only a small house by WA standards, single story, 3 bedroom, 2 bathroom, but maximizes the canal frontage living areas. We are surrounded by some mansions, but most of them are empty holiday homes for the rich. We will get to enjoy ours all year round, while the slaves to wealth creation will enjoy them for a week or so. After a short battle with council over some parts of the plan, construction commenced in November 2020. Currently the bricks are on site and they should be laid anytime soon. Look up little.house.on.the.canalon Instagram for updates.
Our boat is stored at the Port Bouvard marina (the cryptic clue from the last blog post) that is at the entrance to our canal development. Once we are close to completion, we will permanently moor it at our jetty, but in between that time, we head off on the weekends to explore the waterways around Mandurah. We often moor at our jetty on our block, getting to know our new neighbours and taking in our future lifestyle.
Completion is anticipated for June/July 2021, although COVID19 lock downs and supply chain issues may extend that a bit. Its a big commitment, even for people who plan to live for 20-50 more years. However, we are not shy of pulling up our roots and moving on to the next adventure. This will be the 5th home that Paige and I have owned together in 17 years. It will be the 9th home we have lived in together. So this is normal for us and after being in our current home for 7 years, it is long overdue. We also make very quick decisions. Some may call us rash but we don’t ponder too much about things. We consider, decide and act, quickly. It only took a few days to put in our offer for the land. Paige is saying this will be our “forever” home. I not sure our housing history would agree with her.
I hope to revisit this blog post in a few years time. Smile and say what a great decision it was. It all sounds fabulous and a bit indulgent, but I’d give it up in a heart beat to be free of this disease.
We have alluded to having had a caravan in a couple of posts but we haven’t really mentioned much about it. We purchased it in late 2018 after I had completed my second course of chemotherapy with the intention of hitting the road between treatments. We did just that, clocking up several thousands of kilometres across Western Australia in 2019. We had a great time. It’s amazing to hit the road, fully self-contained and on some trips, off the grid. We visited places we had never been, even after living in this vast state for over 50 years.
But by the time COVID19 hit, it was becoming difficult to get away. I was starting chemotherapy again and Paige was struggling to fit work in with our planned travelling schedules. COVID lock downs had put a stop to all travel anyway. Fortunately, the COVID lock downs did not last too long and we were able to enjoy a lot more freedom of movement than the rest of the world. But due to my treatment regime, we were limited to a maximum of a week away and loading, driving, setting up, pulling down and cleaning really were not appealing in that time frame. One of the first signs of COVID recovery was a surge in the demand for caravans and boats. International travel was banned and still is, so Australians started to holiday in their own state and country.
We thought this was an opportune time to sell the caravan as we still were not able to use it enough, despite the removal of COVID restrictions. We placed an ad on Facebook Marketplace one evening and within an hour we had 4 people wanting to come and look at it in the morning. By 9am the next morning, it was sold.
So, what now? How are we going to fill in time between treatments and Paige’s work schedule? We were now down to only the weekend as a time to “get away”. So, we bought a boat!
Yes, we bought a money pit. It was 9 years old when we bought it, but it had spent the first 6 years of its life in a warehouse, never coming within coo-ee of the water. Consequently, it was in near new condition and at a great price, the same price that we sold the caravan for, a direct swap. At least with a boat, you can have a day out on the water and have a great time. You can’t do that with a caravan. Well, that is our justification for buying it. A few weeks before buying the boat we both got our Skipper’s Tickets (boat licences), with Paige scoring slightly higher in her written and practical test than me. I thought I would mention that, just to take the wind out of any future boasting by Paige.
For the last couple of months, we have been taking it out on to the water and practicing our manoeuvres, especially docking. We have had a few hard hits against the pylons. Similarly, practicing our reversing and launching and retrieval has been a priority, but we seem to have nailed that now. We have started to take family and friends on the boat, but only once we felt we knew what we were doing. We have yet to head out to sea, although Paige did sneak out past the breakwaters and did a sneaky loop around the Indian Ocean. Unfortunately, this time of the year it is way too windy to get out more often. March to June should be the best time.
Our boat came without a name, so after many suggestions, “Boaty McBoatface” was a front runner, we decided on “Silver Lining”, a nod to the positives that have come out of the last three years and to the fact that the boat has a silver line down the side. We have placed the name on the boat but have yet to perform the naming ceremony. Paige has the details about that, but I know it involves copious amounts of champagne.
Already we have had some very memorable outings, especially our last outing. Here’s a snippet of that.
But this is not the BIG plan I mentioned in the last blog post, there is more to come, but the boat is a central factor in this BIG plan. There’s a hint embedded in one of the images above.
Hopefully, we won’t be in the same boat as Split Enz.
It has been a long time since I put fingers to keyboard. Five months in fact. I haven’t blogged because… because, um, I don’t have an excuse. At the end of the 2020 school year, I retired from the Education Department after 36 years of service. Its wonderful working for the public service. They really do treat you as a number. Luckily, I’m comfortable avoiding the spotlight in my life, as I probably would have been slightly annoyed at the complete lack of acknowledgement or farewell from my employer of 36 years. But enough of the negativity, that gets me nowhere.
I have been on maintenance chemo for about 10 months now, passing the 80th chemotherapy/infusion milestone a few weeks ago. However, it has been difficult to gauge the effect of this chemotherapy on my tumours. After a few months of stable disease with some slight reductions, my tumours have slowing started to grow back again, one of them at least. After 10 months, one tumour has grown about 10% and the other has remained about the same size. This is classified as “stable disease” by my oncologist, but any growth still concerns me. My biggest concern has been a small “shadow” in one of the lymph nodes in my chest. My oncologist is not too concerned as its nature is yet to be determined and I have been battling a viral infection in my lungs for a few months now and it could be related to that. We will have to wait and see and try not to lose any sleep over it.
I am tolerating this chemotherapy quite well now and feel confident I can stay on it longer term, provided my tumours do not grow too large. I still get very tired, especially a couple of days after the infusion, which is usually the weekend! My neuropathy in my feet is under control, mostly. If I forget one of my nerve calming drugs, I’ll know about it later. Fortunately, I also have access to an over-the-counter foot rub lotion which calms my neuropathy considerably, especially when combined with one of Paige’s soothing foot massages. I have a cough which peaks almost immediately after chemo and slowly diminishes over the next week.
Since I had my port put in (August 2020), I have suffered almost daily headaches, mild, but several per day. They come as quickly as they go, usually they last for a few minutes, but some linger for hours and with a greater intensity. I had a CT scan last week to check if anything sinister had made its way up there. Fortunately, they found nothing (no tumours that is 😊 ), but the source of the headaches remains a mystery. I suspect the port has something to do with it. Perhaps a nerve is being compressed by the tubing running up my neck. I’ll have to have the port taken out to find out if this is the case, but that itself, may not be easier than just putting up with the headaches.
As much as I would like to see tumours shrinking, that is not going to happen on maintenance chemotherapy. I need to take stock and appreciate that 10% growth over 10 months on one tumour and none on the other, is actually an excellent outcome for maintenance chemotherapy. More importantly, there is no spread to other organs.
So, at this point, its business as usual. Not that business has been usual over the last three years. Since I have retired and planning to be around much longer, I’d better do something worthwhile with my time. I started golf lessons today but we do have other things, BIG things in the pipeline, but that’s a matter for another blog.
This week I passed three years from the day I was diagnosed with mesothelioma. At that time, my oncologist gave me eleven months to live. Why specifically eleven months? I don’t know. Statistically, a mesothelioma diagnosis comes with a twelve month prognosis and even less, depending on the stage of the cancer. I was diagnosed with a stage IV cancer, so my odds were decidedly less than the average.
I recall thinking eleven months was way too brief. I wished for three more years. Three years would be good. It was achievable. I had a 23% chance of surviving three years, so the odds were stacked against me, but here I am, despite the odds, alive and (relatively) well after three years. I also had a scan this week and I’m happy to report that my tumours are no bigger than they were at diagnosis. They have not spread. Over the three years they have shrunk in response to treatment, down to almost 50% their size, but eventually regrew back to their original size. This is acceptable, as mesothelioma tumours are notoriously aggressive, especially at the size that mine are. Hopefully, my tumours are a bit more indolent (slow growing and symptom free) than the average mesothelioma tumour. Over the last three years I have spent over thirty months on one form of treatment or another. That treatment has slowed me down more than the cancer.
During the last three years I have come across many fellow mesothelioma sufferers. Many were diagnosed after me and have since died. Considering this, I do regard myself as being one of the lucky ones. At the same time, I also know of several, not many, who continue to survive beyond five years, some approaching ten years. The odds of surviving ten years is less than 1%. The odds of surviving mesothelioma are 0%. It will get you if something else does not beforehand. There are claims that some survivors are approaching twenty years survival. I have doubts about these and their initial diagnosis, but good luck to them if they have indeed survived that long.
While my tumours may seem to be a bit indolent, I have seen enough mesothelioma patients go from being active, symptom free people to succumbing to mesothelioma in a couple of months. I have looked upon these people thinking they will be around for a while, but the next time I hear from them, they are struggling badly and approaching their final days. I follow several overseas meso sufferers on Facebook and Twitter. Too often they suddenly stop posting and it becomes apparent that they too have passed away. These observations keep me in check, and I don’t get carried away with the idea that I’m going to be an exception.
Having said that, I think I short-changed myself, wishing for only three more years at diagnosis. I’m now going for 30 more years. If there is anything in a wish I may as well aim big.
I am continuing the chemotherapy regime that I started in April. Initially, the chemotherapy hit me bad. I really did not see myself lasting too long on that treatment. Fortunately, a 25% dose reduction made it much more bearable and during the last few doses, I have barely had much to complain about at all. Hopefully, I can continue with this treatment for the long term and achieve similar results for many years to come. I hope to be in the 14% this time next year.
We have some big plans coming up in 2020/21. While I’m responding to treatment and feeling well, we will be living for today. Meanwhile enjoy a bit of the great Freddie Mercury.
It has been 5 months since my last post on my condition. I have been reluctant to post anything because I really had no idea where I was at. My last post rejoiced in the dramatic reduction in tumour size. However, this proved to be short-lived as my tumours came bouncing back to full size a short time later. Well one of them did. My next scan showed one of my tumours almost back to its largest size, while the other was almost as small as it had ever been. Make of that, what you can.
But the reality was that the smaller tumour had been through a dose of targeted radiotherapy in October 2019. The larger tumour was supposed to have been spared as it was the one being measured in the immunotherapy trial. But my doctors suspected it was hit with some collateral radiation and shrunk accordingly. But, because it didn’t receive the same dose as the other one, it soon recovered and increased in size. I think the smaller tumour is still reeling from its dose, hence its small size.
However, the regrowth indicated that the immunotherapy was no longer working and subsequently my participation in the immunotherapy trial ceased. I had mixed feelings about that. I had great hopes for the immunotherapy, but the side effects were starting to take their toll on me. Eight months of chronic, debilitating joint inflammation in nearly all my joints was becoming unbearable and I suspected permanent damage was starting to happen. Had the immunotherapy been effective, I would have tolerated the pain and inflammation.
Immunotherapy finished about 10 weeks ago. Since then my inflammation and joint pain has significantly diminished. I can now play golf again, sleep better and generally get around a lot better. No more painkillers, steroids and other drugs.
I (re)started chemotherapy 7 weeks ago. This time with vinorelbine, a chemotherapy drug apparently milder than the other drugs I have been on. It probably is, but boy, does it make me tired. I should be able to handle this one well. I’ll have 8 infusions over 12 weeks, then scan. Depending on the results, I will continue on this drug or try another one, but that will probably be my last option. Hopefully it will work and I do know several people who have lived for years with continuous treatment with these drugs. However the last couple of doses has shown that the side effects are considerably worse than my previous chemotherapy. I have just spent the last two weeks in a chemo haze. Fatigue, lethargy, nausea, neuropathy, loss of appetite and depression have been my daily companions. I recovered about 2 days before my next dose, which was 2 days ago. Can’t wait for my chemo haze to visit again
This has all coincided with COVID-19 lockdown. It hasn’t been much fun. Now that I am feeling a lot better and more mobile and with lockdown restrictions lifting, I have decided to return to work in a relief teacher capacity. I done a few days so far and survived. I think I’ve been sheltered a bit as my classes have been a good bunch. I know that won’t continue and I wait the challenge of being fed to the lions at some stage. It has been good catching up with some of my old colleagues. I should be able to fit in more relief teaching around my treatment.
So at this point, I’m not sure if I’m improving, stable or falling apart. I feel better than I have in almost 12 months. My cancer is yet to produce any effects, despite their large size. No pain and no dysfunction. Next scan should tell more, but I have been saying that about all my scans. I’ll be quite happy for all of that to not change.
Twenty twenty started with swollen, inflamed joints in almost every part of my body. The inflammation in my feet and knees had now started to occur in my fingers, hands and elbows. It seems that my own immune system was determined to attack every joint in my body, crippling me for the next two weeks. I would come good again a few days before my next infusion, and then, bang, it was on again after the infusion. This has been going on for 6 months now. The doc said I could come off the trial for a while and start on a course of steroids to correct everything. I was reluctant to do this as I didn’t want to give the cancer an inch of respite from my hyper-activated immune system.
A new, but related immune response also began happening. In November 2019 after playing quite a bit of golf, I developed “golf elbow”. This caused me a bit of grief, but it was improving. But after the last infusion, the inflammation and pain in this injury went through the roof. I was in constant and significant pain. I could not find any position for my arm to alleviate the pain and rest, ice, elevation and pain killers had no effect. I couldn’t book into my (now ex) GP for three weeks, so I waited until I saw my oncologist and finally succumbed to a break in the trial and a dose of steroids. Within 24 hours, the steroids had significantly reduced the pain and inflammation. The break only turned out to be just over a week, so I will be back on the trial very soon.
Since July 2019, my immune system has been attacking my cartilage, ligaments and tendons, in my joints. It is now becoming apparent, that previously damaged connective tissue is particularly vulnerable to this immune response. My dicky knee with its strained MCL has been particularly painful and now, my golfer’s elbow has also been extremely painful. Hopefully the steroids will work on these base injuries as well.
I knew my immune system was in hyperdrive, but I wasn’t sure if it was doing anything with the tumours.
Now the good news
Despite all this pain and inflammation, I wasn’t prepared for my latest scan results, which were released on the same day I started the steroids. I have access to my scans online (before my doctor sees them). There is no radiologist report with them, but I have become competent in examining the images and evaluating the results. I couldn’t believe my eyes. I measured a 40% REDUCTION in tumour size! I got excited over a 1% reduction in my previous scan, but this was just something else. I really didn’t want to read anything into this as I wasn’t seeing my oncologist until the end of the week, but I found it difficult to contain my excitement until then.
A few days later I saw my doctor. He confirmed the reduction and no new spread. In one tumour, the reduction was 33% and the other was 40%. The latter tumour is not being measured for the trial as it had undergone some radiotherapy late last year. Now, I can hardly feel that tumour (my barometer) which is in my upper chest and bulges out between my rib cage. I expected (knew) that tumour had shrunk considerably due to the radiotherapy, but was unprepared for the reduction in the former. This is almost the smallest these tumours have been since I was diagnosed. My oncologist was suitably impressed.
Six months ago, my treatment was struggling to keep a lid on the tumour growth. The treatment had slowed growth, but the tumours were almost at a size where I would have had to leave the trial. I had extrapolated that by this time I would be facing some major issues with their size and facing limited options to deal with them. I had started to prepare for the worst by getting my affairs in order, resigning from work and looking at my short-term future.
Immunotherapy is a highly variable beast, hit and miss at the best. Only about 40% of cancers show any response to it and only about 15% of people with those cancers have a response, which can range from delayed growth to complete remission. It’s on a par with chemotherapy, but usually the side effects are not as bad as chemotherapy, although I would dispute that. Those that do have a reasonable response are lucky enough to have the genetic configuration that facilitates the treatment.
The time till response is also variable. Most people who have a response usually notice something after a 3-4 months. I was quite despondent after my oncologist told me that.A “response” is defined as a reduction of at least 30% from the size at the start of treatment. After 11 months I had not had the response I was hoping for. However, other oncologists have told me that in some cases, the response may not occur until after treatment has finished and sometimes many months after. I have two months left on this treatment and after that I begin a monitoring phase. Hopefully this is the start of my response and it will continue well after treatment ends. Because I have now shown a response, I may be given a repeat treatment course at some point in the future, should the tumours grow back.
This development has dramatically changed my outlook. I now see a longer-term future. I know, given the nature of mesothelioma, that all this could be turned upside down in the matter of weeks. But now I have a bit more confidence that that time is still some time away. I have withdrawn my resignation from work and have gone on Leave Without Pay (LWOP) for all of 2020, eyeing a possibility of returning to work in 2021. That is a long time away, but it is a time I can now see. In the meantime, I have four more infusions to get through, then I’m looking forward to an long extended break from treatment and inflamed joints.
I just want to say how much I love Paige. She has been my rock through all this. I would not have coped without her. She has been the difference between me pushing onwards rather than just giving it all up.
I’m not really in country music, but this Tim McGraw songs hits the potato on the head.
Whenever I look at the scans of my tumours, I just see 2 large potatoes. Two large, knobby, dense and irregular shaped lumps. I find it useful to visualise how large and obtrusive they are. I’ll look in the potato basket at home and find a potato that is approximately the size of my tumours and hold it and imagine it wedged into my thorax. When I try to explain to people the extent of my tumours, it is often difficult to grasp a tangible understanding of their size and position.
These potatoes of mine are large. The largest had a maximum length of 100mm and a diameter of 65 mm. The smaller one had a maximum length of 87 mm and a diameter of 58 mm. Not much smaller than the dimensions of a 375 ml soft drink can.
These potatoes are wedged between the outside of my right lung and rib cage, in the pleural membrane.
Mesothelioma is not lung cancer. The cancer is outside of the lung, on the pleural membrane that surrounds the lungs. This membrane also extends around the heart, abdominal organs and gonads. Mesothelioma can occur in any of these locations but is mostly found around the lungs.
My largest potato is growing inwards, towards my middle of my right lung. Compressing the lung as it grows. This has resulted in reduced lung capacity and shortness of breath. The smaller potato, located at the top of my right lung, is growing outwards, pushing through my rib cage and leaving a small bulge in my chest. This bulge was my first sign that something was not quite right and has since become my barometer for growth and shrinkage, as I can feel its size change over time.
At the moment, these potatoes are not causing me too much grief. They could probably get even larger before they are a problem. If they do not spread to other areas or impinge on vital blood vessels, I should be ok for a while. The smaller tumour recently underwent a course of radiotherapy to shrink it as it was about to encapsulate a significant chest artery. This was successful and now the potato is much smaller than its largest size.
If my mesothelioma was in my left lung then there would be more concern. Tumours as large as mine can press against the heart, causing all sorts of circulatory mayhem, usually lethal. The left lung is also smaller than the right lung and any loss of lung capacity would be proportionally greater than that in the right lung.
Not all mesothelioma sufferers have large tumours like mine. Many have a splattering of pin-prick size tumours all over the surface of their pleural membrane. Many have variations in size and shape in between these two extremes. Most sufferers I have come across tend to have a lot of smaller tumours across their pleura. Often they find it difficult to comprehend that I just have two large tumours.
So grab a couple of potatoes in the 100 mm range and hold them against your chest. Hopefully you will get an understanding of what I and many others have to deal with.
Enjoy some Joe Satriani – My Mystical Potato Head Groove, while I go and make some chips.