Tl;dr – I have (had?) Stage IV metastatic melanoma. This is a diagnosis whose current “5 year survival” rates are about 5%, meaning that 95% of people with this diagnosis die in 5 years or less, generally a lot less, regardless of the treatments they attempt: surgery, radiation, chemotherapy. However, that is entirely based on people diagnosed more than 5 years ago, and everything has changed in the last 5 years, making that number obsolete. I have had a very challenging summer and fall 2016. I have a fantastic result though: using treatments that have become available only in the last 5 years, I have seen my tumours shrink, and many of them disappear.  My symptoms are almost all gone, I am not taking any pain medication, I am exercising regularly and my energy levels are almost back to normal. My treatment continues, and my life is not entirely normal, but it is amazingly great. I look forward to returning to work, though I am still not sure when that will be. We live in the future.

So details, for those who want details. In hindsight, my first symptom was fatigue in the fall of 2015. I came home from an amazing 5 week transPacific trip, and within days was in bed with a wicked cold we all called the Chilean Death Flu. When I got over that, I had to work long hard days to get ready for CppCon, then was at CppCon running days from 8am to 10pm or later, so not surprisingly I was exhausted by the time that was done. But I never really got over that exhaustion and got back to my regular energy. This is a hindsight thing, because fatigue is a cancer symptom, but I never went to the doctor and said “I’m so tired, let’s find out why.” In January after a dentist appointment, I noticed a slight lump and soreness under my chin, but I forgot all about it as the rest of my busy life continued to happen. By April, I had noticed it again (it was larger) and this kicked off a round of medical things that just kept escalating. Blood tests, ultrasound, cat scan, biopsies, more cat scans, pet scans, MRIs, more biopsies – oh, many many more biopsies – and never any conclusions. I had to cancel a headline appearance at an August conference, and scale back my CppCon commitments a bit at a time, eventually deciding I couldn’t even attend. Through all this, the lump, whatever it was, kept growing. It was starting to hurt. Eventually, I had surgery to remove it, enabling all kinds of tests to be run on the removed material. Throughout this I kept the process private, discussing with only my very closest family members. Because I didn’t know what I had, I didn’t want to tell colleagues, clients, conference organizers or even friends “I may be sick, or not, and if I am it could be anything.” So I kept it to myself.

It was September when I officially got the news. The now-removed lump was melanoma. Since it wasn’t presenting on the skin (as a mole or other visible surface blemish), it was a metastasized melanoma. And since the cat scans showed that lumps (growths, nodules, masses, lesions – doctors almost never say tumour) were also in my lungs (and getting larger between scans), it was Stage IV, and distant. Here’s Wikipedia on the matter:

When there is distant metastasis, the cancer is generally considered incurable. The five-year survival rate is less than 10%. The median survival is 6–12 months. Treatment is palliative, focusing on life extension and quality of life. In some cases, patients may live many months or even years with metastatic melanoma (depending on the aggressiveness of the treatment). Metastases to skin and lungs have a better prognosis. Metastases to brain, bone and liver are associated with a worse prognosis. Survival is better with metastasis in which the location of the primary tumor is unknown.

Literally every time I met a doctor in September, they told me another place it had spread. There was the unknown primary, which my own immune system had already cleared away. The neck lump. The lung tumours, first detected in May and having multiplied and grown all summer. The liver. The spine. The surgeon had no more to offer me – there were too many to consider removing them. The radiation specialist also didn’t want to do anything – the neck lump might come back, but “it’s not a survival issue,” he said, meaning that I would doubtless die from the lung or liver involvement, or some other new lump, long before any regrowth of the neck lump had a chance to hurt me. And radiation to the neck would ruin my voice and quality of life. They both repeatedly used the word incurable, just as Wikipedia does. One of them praised me for crying “because it means you understand.” I made lists of paperwork to update (our wills) and find (my life insurance policies) and started thinking about what music I wanted played at my memorial ceremony. After all, those facts are pretty cut and dried. If the median is 6-12 months, you have some months. Maybe 18 months if you’re super lucky, maybe 3 if you’re not. It’s actually a lot of work to “get your affairs in order” and I was super tired and found thinking very difficult, so it was even harder than you would think it would be.

But, here’s where things take a turn. The surgeon told me that things have really changed for melanoma just in the last few years. That great strides are being made. The radiation specialist told me that what I needed was something systemic that would attack everything at once. They referred me to a medical oncologist. And he was like no-one I have ever met.

For one thing, he looked at me – my face, not his feet or my feet – when we talked. And he smiled. He told me I had come to the right place, and that he knew what to do for me. He’d already run some tests on the lump and ruled out one set of treatments, but felt I was a very good candidate for another set. This involved being in a study, getting a treatment that was technically experimental. (Technically because it involves combining two drugs, both of which are already approved in Ontario for treating this, but the combination is not. Since then, the combination has been approved in the US. Things are moving quickly in this area.) He started talking about what percentage of his patients survive and I interrupted him (probably a bit sulkily, because honestly I wasn’t having a great month) and said “for a while, anyway.” He grinned. “I have patients who I have to wait for them to die of old age so I can declare them cured. That’s my plan for you.” So then that was all three doctor’s offices that I cried in, but this time because he gave me hope.

So that brings us to the weird world of cancer and what “cured” and “curable” and such mean. The gold standard is to simply be alive 5 years after you’re diagnosed. That is why diagnosing “early” increases survival rates – not only because people live longer than they otherwise would have (sometimes they do, sometimes they don’t) but because the survival time is measured from diagnosis, not from when some particular stage is reached. If you are diagnosed a year early and nothing changes about the age at which you die, you still survived a year longer after diagnosis than you would have with a later diagnosis.  At first, there was so little that could be done for cancer that basically you either lived or died, and if you managed to still be alive after 5 years, you would almost certainly go on to die of something else like a heart attack or old age. But now people are being diagnosed so early, and even very aggressive cancers are being held back for a while, that the 5 year mark isn’t necessarily a sign that you’re cured. Doctors like to tell people they’re in remission if they don’t happen to have any tumours at the moment, a word that carries with it a promise that the cancer is pretty sure to come back later. You really can’t draw any conclusions about cancer in general, but there may be some stats available about your particular type and stage of cancer.  

So, in order for the official cancer folks to think I’m cured, I need to live 5 years after my diagnosis. It has barely been 6 months. So I’ll be waiting a while on that. And anyway, some folks are now more interested in “progression free survival” which is not only being alive, but not “progressing” during that time – getting new tumours, or having your old ones grow. You also hear about disease-free survival, which is having no symptoms and no signs of tumours on your scans, and event-free survival, which is not having “events” such as needing a surgery, or even reporting a particular pain. There seems to be a belief that three years of disease free survival after melanoma means you can relax, it’s not coming back. I guess for me the clock on that has only recently started, but I’m getting ahead of myself.

So, according to the current definition of cured, nobody gets cured of what I have, because the people diagnosed 5 years ago and earlier are the only ones whose outcomes are considered, and they pretty well all died. (I’ve had friends tell me stories of people who died of melanoma 5 and a half years after diagnosis, making them count as survivors in the cure math, but not, in the end, surviving it.) So it’s incurable. But in the last 5 years, they’ve started an entirely different kind of treatment, which works, and people on this treatment see their tumours disappear and their symptoms stop and they just return to their regular life. For how long? Well, it’s not possible to know yet, since the number of people who have 5 years of disease free survival, or even three, is very small. It seems like a forever cure. But it can’t be declared one because there just hasn’t been enough time go by yet to draw that conclusion. And that’s why the medical oncologist says he is waiting for his patients to die of old age. Only then can he conclude they never died of the cancer coming back.

Right, diversion  over, what is this treatment I was offered? The two drugs Ipilimumab and Nivolumab. They are monoclonal antibodies. They work by getting your immune system to remove the cancer. This is entirely different from chemo, which poisons the cancer and most of the rest of you too. People's immune systems clear away small cancers all the time. For example, I must have had a "primary" somewhere on my skin. I never saw it, my doctor never saw it, so I must have cleaned it up - although unfortunately not before it spawned off some more cells. That’s normal, a melanoma forms, it gets tidied up.  The observation on Wikipedia that people with unknown primaries do better is probably related to people with unknown primaries having a proven ability to clean melanoma away. The recent breakthrough is understanding that when tumours get to a certain size, they prevent the immune system from cleaning them up – they develop a sort of “cloaking system” that keeps the immune system away. So these two drugs, one ramps up your immune system and the other interferes with the preventing so the tumours no longer defend themselves against (or hide from, or turn off) the immune system. My body just has to do what it did before and clear it all away.

I am in a study because these drugs are not yet approved in Canada to be used in combination like this, though each are approved alone. They have already done studies comparing dose levels of the drugs and found, rather unexpectedly to me, that people getting different doses have the same success rate. This study is to see if they have the same side effects. Personally, I consider that aim secondary to getting me cured, but that's the technical aim of the study. The side effects from these drugs are all the same - inflammation and overactive immune responses. That might mean a rash, or swelling of something. If your eyes swell, that's not as bad as if your heart swells, or your thyroid. I had to commit to being able to drop everything and head to downtown Toronto if I get any kind of side effect at all. That means I can't travel for the duration of the study. The side effects, I was warned, may also keep me from working or from doing some of the things I normally do. So far 100% of the study people get side effects, the issue is only how severe they are. I may end up treated with steroids if they get too bad. As a side note, I understand that these drugs alone (not counting the time and effort of doctors, nurses, scan techs, and so on) cost about $200,000 a year. Being in the study means that the study sponsor, not the Ontario health care system, covers the cost of the drugs. There’s no cost to me for any of it; my only expenses have been hundreds of dollars on hospital parking (don’t get me started), cab and transit fares, and the occasional overpriced food and drink from hospital food courts.

So far, I’ve been extraordinarily lucky about side effects, having by far the least of anyone in the study locally. I may have some thyroid damage, but that’s all. Nonetheless the impact on my day to day life has been total. Working became impossible – partly because I was constantly going to downtown Toronto for appointments, and partly because of symptoms I began to experience as the tumours grew and spread. In less than a week I went from popping out for a 2 km hike while my Thanksgiving turkey cooked, to being unable to get out of bed. I spent weeks at a time in bed. I spent almost a week in the hospital after I got severely dehydrated, possibly because of the liver involvement messing with my metabolism. I pulled muscles coughing (because my lungs were full of tumours) and I may also have cracked a rib. I was taking medications for pain and cough but I was very ill and very weak. I am lucky to have a devoted husband who has put in incredible energy to give me the support I needed – looking after me at home, carrying more than his share of work both at home and in our business, and driving me to all those appointments. I don’t know how I could have coped without him. I also have a close corps of family and friends who cheered me up over email and Skype, and took care of things I couldn't take care of. I had to learn to let people look after me, which was a very difficult lesson. I haven't mastered it, but I've made some progress.

Then the treatment started to work. The way this shows up is in the form of pain. The immune system starts to attack and clean up the tumours. This is a good thing, but it involves swelling and increased blood flow to the area and such, which manifests as pain. A lot of pain. But it was weird, because we all knew this was probably a really good sign and reason to be optimistic and hopeful. Within three weeks of the first treatment, my symptoms began to improve. I had a setback with some hip pain that turned out to be caused by tumours in my hip and leg bones. It’s unusual for melanoma to spread to arms and legs, and more unusual than that to discover it from pain.  It is typically discovered when your leg bone collapses underneath you and you need emergency surgery with plates and pins and things. They were worried I would break my leg, so I got radiation treatment for a week to give those tumours specifically a hard knock back. The radiation techs asked every day “you have pain meds, right? You have enough? You need a refill?” and within a few days I found out why. The pain when the radiation starts to blast the tumour apart, and the immune system comes sweeping in to clean it up, is, well, memorable. And I know precisely how long it takes my opioids to start working from when I take them, as a result.

Another diversion, this one on metaphors and visualizations. I reject the war/fight/battle approach to diseases and to cancer. My leisure time involves a lot of outdoor activity – bike rides, wilderness canoe camping, hiking, that sort of thing. When you’re trying to ride your bike up a long, steep hill, you are not in a fight with the hill. You are not battling the hill. It’s simple: the hill doesn’t even know you are there. The hill doesn’t care. The hill isn’t steep at you, for you, because of you. It just is. When you’re paddling a canoe into the wind, the wind isn’t blowing in some sort of spiteful attempt to keep you from that amazing beach campsite. The wind doesn’t know you’re there, the lake doesn’t know you’re there. You can “win” or “lose” – get to the top of the hill, make it to the campsite, give up and turn around because there isn’t time to do it now – but the hill or the lake doesn’t win or lose, or even engage in this alleged battle in any way. Things can be very difficult without being a fight, a battle, or a war. In the same way, cancer isn’t a side in a fight. My tumours aren’t trying to kill me. They aren’t co-ordinating with other people’s tumours. There is no communication or plotting between elements of my disease and elements of someone else’s disease. Neither cancer in general nor my tumours in particular will feel some sort of sting or loss when I “win” and they won’t exult if I “lose”. They aren’t battling me, and it doesn’t really make sense for me to battle them. I can’t kick cancer’s ass because cancer is heartless, mindless, assless. My metaphor is more about cleaning up. Something is wrong in my body – things are growing where they shouldn’t, and this can be very dangerous, don’t get me wrong. Growths that squeeze vital organs keep them from working. Growths that eat a hole in my leg bone can result in the bone crumbling and collapsing underneath me. This needs to be fixed. This needs to be cleaned up. My immune system can do that, but it needs some help, and the medication is providing that help. I can imagine the lumps and growths being taken apart and tidied up by white blood cells and other immune components of my body. When I feel the pain of a flare that indicates a response is happening, I focus on imagining that process in action right where I’m feeling the pain. I take care of myself, push myself hard when I need to, ask the right questions, report the right details to those who need them, and do the work of getting better. It is hard, really hard, and I do contribute to my recovery, as well as being a very lucky person.

By December I really could tell I had turned a corner. I wrote in a family email update:

My third treatment is in the books and the fourth is scheduled for the Thursday before Christmas. My first scan since the treatment began will be in early January, and then I guess I will have an appointment where someone will tell me what they see on the scan. My expectation is that they will see dramatic shrinkage if not outright disappearance of all the growths and lumps I was told about through the fall, putting me in the 80% of study members who “respond” to the treatment. From my point of view, I ask “where is my cough?” – totally gone. “Where is the belly pain at the bottom of my ribcage?” – totally gone and they can poke my stomach in an exam and it just feels utterly normal like before I was sick. “Where is my fatigue?” – gone. I am not napping. I am out of bed every day and out of the house if I need to be. I can go shopping. Heck, yesterday I went to Costco. That’s right, Costco in December. That probably tells you all you need to know about my energy levels.

We then had Christmas and New Years and I had a scan and met with my doctor – the grin on his face as he came into the room told us all we needed to know. He actually took us out of the exam room to see my before and after scans on a monitor. As I wrote to family, quoting him:

“Here in the lungs, this and this and this, these are tumours. These are blood vessels don’t worry about those. That is a rib. Now over here see? The tumours are gone. Here there was a big blob of something, that’s gone. Now down here to the liver, see how swollen it was? On this side you can see it’s back to normal size. And tumour here and here, over here now you just see a small shadow in that place, probably a hole left behind when the tumour was gone.” And so on.

We came up with a plan to wean off the pair of pain medications I was using, which worked, and other than Tylenol for a headache occasionally, I am taking no pain medications at all. The radiologist opinion, which came later, is a little more conservative, but uses the word “disappeared” fairly often, along with “marked improvement” and “healing”. Overall, the reports show a very good response. Alas, the “whole body” cat scan didn’t include my hip, so I don’t know how things are going there. But my overall colour and energy makes it clear that I have had an amazing response. They don’t see anything new. Everything they used to see is going or gone.

The only question remaining is how long to keep treating me for.  We have switched, as scheduled, from Ipilimumab and Nivolumab every 3 weeks to just Nivolumab every 4 weeks. I have had one and will get at least one more treatment, then depending on the results of the scans after those, they might stop or keep going to 4 treatments or as many as 13. They really aren’t sure how long to treat people for. Some people are better forever after just one treatment – these are folks with terrible side effects who can’t have a second treatment. At first they kept treating people who could tolerate the meds indefinitely, then they decided two years was sensible, then one year, now … well, we’ll take it as it goes.

I’m still essentially side-effect free. I’ve lost a lot of weight: 25 pounds or more since the surgery, most of it in a single unpleasant month, and I had slowly and deliberately lost 35 pounds over a few years before that. I am already starting to regain some of my muscle, lost during all the bedrest. I am sleeping well too, having finally shaken the effects of a lingering “Christmas cold.” (It might have been the flu – there was an outbreak, and I couldn’t have a flu shot this year because of the immunotherapy.) I am cleared to drive again, since I’m off all my pain meds now, and I can have a glass of wine from time to time should the mood strike me. My thyroid levels were low, so I’ve started thyroid meds. They’ve come back to normal on the meds, and I don’t know if that will end up a life-long thing or not. It’s a pretty minor effect overall – plenty of women my age take thyroid meds every day. Low thyroid levels cause fatigue and cold sensitivity, both of which I had in early January, and which seem to have improved since I started the thyroid meds. I had been losing hair, not at the levels you see for people on chemo, but noticeable, and since I started the thyroid meds, that has gone back to normal too. I have enough energy that I could travel to Waterloo for a C++ Meetup in February, my first "public appearance" in perhaps a year.

So that is where I am. My tumours are dramatically shrunken or gone, and may never come back. Bone is growing back where tumours ate it. My symptoms are gone. I don’t know how much longer I will be treated for, or whether more side effects will still arise, but I can start to build my way back towards a more normal life. I got better. I was told I had incurable cancer, Wikipedia told me less than 10% survive it even for 5 years, I could expect to live for just months, and now, less than 6 months after being told that, I’m better. It’s weird. Wonderful, but weird. This is like being around when insulin was first being used, or antibiotics. It changes everything. I should probably have been dead by now and instead I feel the way I did before I knew I was sick, or perhaps even a little bit better.

I decided to share all of this detail for a few reasons.

• People are curious – I get emails asking if I’m ok, how am I doing, sending me good vibes and such from folks who really don’t know what’s happening but know something is. I would like all of them to know I’m ok now, even though I still can’t travel.
• People are unaware how much things are changing in the world of cancer treatment and research. I still shudder to think what would have happened if I hadn’t ended up referred to the particular doctor I ended up with, and had instead only been offered the old (useless) treatment. I like sharing the success story so that other people will know about it.
• It’s a very happy story and everyone who knows the details is really happy to know them, so why not share that more widely?

I will still be less active than usual for a while, but I am working my way back to being my old self.

Kate