Flying blind

I’m in the third session of chemotherapy.  On Monday I got four hours of the usual toxins (oxaliplatin + calcium folinate + Avastin) followed by an injection of fluorouracil and a balloon pump full of 5 g of fluorouracil to take home with me.  It sounds just like the previous two sessions, and indeed the differences are minimal.  The first session I didn’t get the antibody that prevents angiogenesis.  It was too soon after surgery and I needed blood vessels growing.  The second session I got the antibody, but slowly.  The doctor wanted to make sure I wouldn’t react badly to it.  The transfusion took an hour and a half.  Everything went well, and this time, the transfusion was a third faster.  Next time, it will be faster yet.

It’s fair to say that the first quarter of chemotherapy is over.  The pump was removed on Wednesday.  Three sessions essentially done, nine more to come.  What has happened so far?  What is going to happen?  On the surface, everything is good.  I have only the mildest side effects and my blood looks fine.  I’m generally healthy and take the therapy well.  But what does it do?  Is it effective?  There is no way of saying.  There are no tumor markers in my blood that can be checked and no imaging procedures scheduled.  As all visible tumor tissue was removed during surgery, one wouldn’t see anything right now even if the therapy didn’t help.  It will take some time for the cancer to make a comeback.

The chances it does are high.  Everyone seems in agreement on this.  Metastases in the liver is something I keep reading about.  It can clearly get worse.  How long it might take is an open question.  What the chances are is another.  No one can answer these questions.  All numbers are statistics based on clinical trials or observations of a large number of patients.  Any individual will react differently.  The fewest measurements are exactly average.  There’s always a distribution.  This is my hope.

Right now, during chemotherapy, the cancer must suffer.  With my regular exercising, good state of fitness, general health, and relative youth, my chances of reaching the mythical state of survivorship and staying there must be higher than they should be given my diagnosis.  There’s no doubt in my mind that I’m above average.  Time will tell what good it will do me.

Time is where the answers are.  No one else knows anything.  The only way of finding out is by waiting.  Maybe it’s for the best that time can’t be queried prospectively.  I wouldn’t want to know that I’ll die next October.  But it would be nice to have a few answers instead of submitting to chemotherapy and waiting for each two-week period to pass.  I don’t even know whether it’s a good sign that I have few side effects (though it means I can continue at the full dosage).  It's as if everyone had their eyes closed.

It’s pointless to try to guess the future.  I’m not one to ponder, but it’s frustrating not to know what’s going on.  I will be in limbo until Easter, slightly inconvenienced by a grave disease but utterly normal to everyone who sees me and doesn’t know.  I'm stuck in my own black box, with no place to go.  Let's get this over with and get some answers.

Polysaccharide K

The second chemotherapy session is coming to an end, and if all of them are like this one, I can move with confidence.  Over the last two weeks, I felt like a normal person.  I worked, I ate and I played with the kids much as I used to do.  I didn’t feel limited in any way.  The side effects were extremely mild.  I forgot to take the anti-nausea capsule (I’m not good with drugs.) on the second day and didn’t suffer for it.  On the third day, I left it out on purpose.  During the second week, I experienced a slight discomfort when urinating and an increased urge to do so even when my bladder was largely empty.  This woke me up a few times at night and kept me close to the loo during the day, but it’s something I can live with.

Over the last two weeks, I’ve ridden my trainer according to plan.  Easy thirty-minute rides on Tuesday, Thursday and Sunday night, and a longer ride on Saturday morning.  The visuals and interactivity of FulGaz kept my boredom at bay.  I’ve discovered a few rides that work for me in terms of length and difficulty, and I ride them in turn.  My heart rate stays between 130 and 135 and my performance at 140 W or so.  It’s under control, moderate, just right to help with chemotherapy.

What won’t help with chemotherapy is polysaccharide K (PSK).  I introduced this substance a couple of posts ago when I explored obscure therapies.  I have now read the two papers a friend had sent me.  This wasn’t altogether easy.  I have no background in clinical research and don’t understand the jargon.  But with some focus and advanced Google-fu, I figured it out.

The first paper, a metastudy of available clinical trials (three, with 1094 patients), showed that PSK is beneficial to patients whose colon cancer had been removed surgically.  This is a clear statement that is of no immediate consequence to me.  PSK is used clinically in Japan but not available in Switzerland (or other European countries, I think).  This might call for a buyers’ club, but three caveats remain.

First, I am not Japanese and might thus not react to the drug in the way the Japanese do.  Second, the chemotherapy regime that PSK has been shown to boost is different from what I am treated with.  In Japan, they use oral fluorinated pyrimidines.  I get, intravenously, oxaliplatin, calcium folinate and the antibody Avastin in addition to fluorouracil.  Third, were the clinical trials controlled for exercise?

Whether it makes sense to add PSK to my chemotherapy regime depends on what it does.  Not too much is known.  Worse yet, for a biochemist like me, no one knows exactly what PSK is.  The polysaccharide is bound to protein but no one knows which.  The second paper reviews research that shows PSK to be immunostimulatory and that it boosts a particular kind of immune cells (T helper cell type 1) over another (T helper cell type 2).  This is apparently required for an effective response to cancer.  With my poor background in immunology, I can’t really judge this.  I didn’t even know there were two types of T helper cells.

I will discuss this with my doctor again, tomorrow when the third chemo session starts, but what’s really to be gained?  As PSK is not a drug in Switzerland, the only way of procuring it would be by flying to Japan (which I’d love to do again) and getting a prescription there.  But what do I know how the Japanese health system works?  Powdered extracts and ground-up mushrooms, which are available in Switzerland, sound it bit dodgy to me.  What do I get, and how much do I take?  For now, I’ll stick with chemo and exercise.

Notes to self

With my mom in town for a week – highly appreciated for giving us a hand and lots of fun as well – I have even less time to write than normally.  How do regular bloggers manage to blog regularly?  Unless I lie in a hospital bed, I always find other things to do, and it’s suddenly the middle of the night and I should go to bed, and nothing has been posted to let you know and help me remember.

On the one hand, this short and quickly composed post serves to dispel any concerns about my well-being you might harbor after three days of silence.  All is good.  I’m experiencing only the slightest of side effects.  My life is as normal as it can be.

On the other hand, it serves to summarize the conversation I had with the oncologist on Monday and the thoughts I’ve churned in my mind since then.  My oncologist is a young fellow.  He’s probably a good doctor but he hasn’t yet acquired the experiences that builds confidence.  He answers questions in great detail, as if the objective wasn’t to give an answer but an assurance of knowledge and expertise.  I got good answers in the first sentences followed by long soliloquies that didn’t add anything.  Here are the answers.

1. Exercise stimulates circulation, which in turn might help get immune cells as well as chemo drugs to existing tumors.  Blocking angiogensis (by Avastin, one of the drugs in my chemo cocktail) prevents new tumors from growing.  There’s no contradiction here.
2. Methadon is frequently given to all sorts of cancer patients at my hospital.  It helps manage pain but hasn’t shown a reductive effect on difficult tumors.  My doctor wasn’t impressed with the initial study that claimed methadon to help overcome resistance of tumors to chemotherapy (which I haven’t even read yet).
3. He had never heard of polysaccharide K but wrote it down to read up on it.  One interesting point he made is that different ethnic groups might react differently to pharmaceuticals.  What works in Japanese doesn’t necessarily have to work in Europeans, whether because of slight genetic differences or of environmental history.

My doctor’s answers were good ones.  They cleared up a confusion I had and reduced two possible magic bullets to interesting options to my therapy whose efficacy hasn’t been shown yet.  I’m happy with this.  Methadon and polysaccharide K might not do me any good now, but I’ll keep them in my mind for when things go bad.  I’m nowhere near this point and should, before long, find the time to read up on both.

Snake oil

Desperate people are good business.  Hope sells for big money and with little consequence.  If a promise doesn’t hold, there’s hundreds more.  Just dig into the internet, and you’ll find miracle cures, life-extending elixirs and serpentine lube.  I’m not desperate, but I’m looking around to see what’s there to increase my chances of survival.  It would be delinquent not to do so.  I’ve already identified exercise, which is cheap (after the initial investment of the trainer) and uncontroversial, but is there anything else?  Anything I could buy?

One option I came across in the newspaper is methadone.  This synthetic opioid has been used for more than fifty years as a painkiller and to wean people off heroin.  Ten years ago, Claudia Friesen, a chemist at the University of Ulm, found indications that chemotherapy is more effective when combined with methadone.  She showed this in cells and animal models, but a clinical trial to assess safety and efficacy didn’t follow.  No pharmaceutical company would invest resources in a compound that’s long out of patent protection.

As a side note, how would such a clinical trial look like?  Normally, the control group gets a placebo.  To double as a powerful painkiller, sugar water probably wouldn’t do.  It seems to me one could solve all problems by volunteering some of Purdue Pharma’s ill-gotten gains to finance the study and get free fentanyl for the control group.  Who wouldn’t want to sign up for this?

Anyway, Friesen has been hyping methadone at conferences, in public lectures and on TV.  She advises physicians and recommends dosages, as if methadone were an established cancer drug.  While the basic science sounds intriguing (though incomplete; there isn’t even a structure of the drug bound to its receptor), this approach puts the cart before the horse and risks patients’ lives.  You can’t ethically treat patients with something that hasn’t gone through clinical trials.  Luckily, this gap is now being filled.  A German cancer charity has just announced a clinical trial with colon cancer patients that do not respond to chemotherapy.  By the time it starts in 2020, I hope to be outside this category, but I’ll keep it on my radar.

Besides methadone, there’s mushrooms.  I haven’t dug deep into the dark recesses of the internet where the most obscure supplements become reliable remedies, but I’ve come across turkey tail mushrooms.  A friend sent me a link to a talk and a couple of papers.

I started with the video where an entrepreneur in the field of fungal production praises the powers of the turkey tail.  Instead of concealing his business interest, he presents it as a gesture of goodwill, sharing the benefits of this almost magic mushroom with the world.  I looked on with growing suspicion as a single data point was used to cement the power of the mushroom.  The speaker’s mother survived advanced breast cancer with the help of the mushroom, the only one in a cohort of 50.  The sensible alternative that her other son prayed harder than all other patients’ kids and thus saved her is completely ignored.

Is it all nonsense?  My friend and I went to graduate school together.  He’s now working at a cancer research institute.  There must be something to this.  The first of the two scientific publications he sent reviews the use of polysaccharide K (PSK), a proteoglycan isolated from the mushroom in immunochemotherapy.  This has been common practice in Japan for years.  The second publication is a metastudy of clinical trials assessing the use of PSK for patients with curatively resected colorectal cancer.

I might not fall into this category.  When my tumor and metastases were resected, the curative aspect was not on the surgeon’s mind.  But this is too powerful to ignore.  I haven’t read the papers carefully yet, but I will ask my oncologist tomorrow what he thinks of this and whether PSK is available in Switzerland.  A properly characterized drug produced under controlled conditions inspires more confidence in me than mushroom preparations from someone’s backyard that might contain anything.

Swiss health

Having cancer is rarely a good thing. It might focus your mind on the important things in life, but it also has a tendency to wipe out the newly gained focus by killing you. Most lives are better without cancer. Mine would be one of them, no doubt. But as I can’t choose and can’t change what has happened, I have to deal with it and fight it and win.  It seems to me that Switzerland is a good place to do so.  Here is my experience with the Swiss health system over the last two months.

Switzerland has mandatory health insurance.  You have to give proof of insurance when you register to live in a town or village.  Insurance is provided by a dozen or two companies that are all required by law to offer the same coverage and take anyone willing to sign up.  The companies charge a wide range of premiums, purportedly based on customer service, perceived friendliness and possibly the efficiency of their operations.  I have picked the cheapest insurance.

Insurance comes in four parts.  Health insurance is the core.  Dental insurance is optional, though I will never understand why my teeth are covered differently than my feet.  Accident insurance is also mandatory but provided by one’s employer.  Again, I don’t understand why this needs to be separate.  Does it really make a difference whether a virus attacks you or you scrape off a patch of skin during a fall off your mountain bike.  The fourth element is optional additional insurance, which might cover you abroad or help pay for private rooms in the hospital and care by the doctor of your choice.  I don’t have this.

Health insurance comes with a deductible.  The higher it is, the lower the monthly premiums.  Being healthy, I’ve always chosen the highest premium.  Last year, when I saw a doctor because of fake foot-and-mouth disease, I had to pay for this myself. This year, I’ll easily make it above the limit, and I might try to reduce my deductible for next year if that’s possible.

Once the insurance kicks in, there’s a copay of 10 per cent.  I imagine that this can add up to a substantial sum for chronic diseases that require expensive interventions.  I got CT scans and a PET-CT and was operated.  How much did that cost?  I don’t know.  In contrast to independent doctors, hospitals charge the insurance directly.  At the end of the year, I’ll probably get a hefty bill with my 10 per cent.  To my knowledge, there’s no upper limit, but beyond five per cent of taxable income, one can deduct medical expenses from one’s taxes.  These are more complications than I need.

Getting medical care was quick and easy, and incredibly efficient.  While I had to wait for a few weeks to get the initial consultation, once they had seen me, I was in the hospital within 24 hours.  All but one of the required tests were done over the next 48 hours.  I hardly had the time to breath.  The importance of the missing test was realized over the course of these two days.  It was scheduled for early the following week, just in time for the results to be available for the next meeting of the tumor board.

Hours after the tumor board meeting, I had a consultation with my oncologist who updated me on my situation and introduced me to the outpatient chemotherapy clinic.  The next day, I spoke to a surgeon for the first time.  My operation was scheduled for the next working day.  I spent most of that Friday afternoon getting prepped for the operation, being educated about the planned procedure and the risks, signing consent forms, and talking to an anesthesiologist.

At the hospital, I’ve only encountered the most friendly people.  I had the impression that everyone – doctors, nurses, carers, caterers and cleaners – was deeply concerned about my well-being and was doing everything they could to make me feel good.  Everyone carried a genuine smile and seemed to work with happiness.

When the surgeon who had operated on me called my mom and Flucha – two bundles of nerves close to losing it – they could tell from the first word that things had gone well.  She was positive, enthusiastic and happy with what she had done.

All patients are treated with the same respect.  The doddering geezer with slurred speech and incontinence, hardly able to move but with the occasional twinkle in his eyes, is treated no differently from a convalescing adolescent who’s on the way to a full recovery.  It was a thoroughly pleasing experience.

The pace of events has slowed down somewhat now.  I go to the outpatient clinic every two weeks to get intoxicated and then return 48 hours later to have the portable pump that keeps infusing toxins removed.  The procedure restarts eleven days later.  In between, to venture slightly off topic, but that’s probably why you’re reading, I live a largely normal life.  Few side effects so far, no handicap, a clear head and a hungry stomach.

I have no doubt that I’ll be back in hospital before chemotherapy is over.  There’s always the risk of something happening, especially in winter with my immune system suffering nearly as much as the cancer.  Whatever happens, I know that I’ll be in good hands.  The Swiss health system is taking good care of me.

Moderate exercise

Exercise helps.  This is almost universally true.  Whatever the ailment, if you get moving, you’ll do better.  According to recent studies, this is true for cancer as well.  Exercise is associated with a substantial decrease in cancer incidence as well as with a better response to chemotherapy or radiotherapy.  This is so uncontroversial by now that first studies are looking at exercise during chemotherapy, by letting the patient pedal while the drugs flow.

I’m lying in a bed rather lifelessly, moving nothing more than my fingers to compose this entry.  I look out of the window at trees that are transitioning from colorful to stripped of all leaves.  How much should I exercise?  What is going on inside me when I exercise?  To address some of these questions, a friend had sent me a review that digs a bit deeper into the molecular processes underlying the body’s response to cancer and how exercise can strengthen it.

The immune system is well equipped to battle cancer.  It sends a variety of leukocytes, such as natural killer cells that can kill tumor cells directly and T and B cells as part of the adaptive immune response.  The main problem is that the tumor environment is modified from the normal cellular environment to make it harder or even impossible for immune cells to infiltrate tumors.  Tumors are low on oxygen and glucose and high on lactate, and generally in an acidic microenvironment.  This is all caused by their uninhibited growth.  A corollary is a resistance to the body’s immune response.

Regular exercise modifies the cancer environment to bring it closer to the normal state.  Curiously, a solid blood supply is important for this.  I always thought one wants to cut the tumor off from the blood supply to deprive it of nutrients, but it seems more important to open a passage for leukocyte to enter cancer cells.  Exercise helps with this.  At the same time, one of the ingredients of my chemo cocktail is avastin, a drug that inhibits blood vessel formation.  Unless I misunderstand something, this makes no sense at all.

The review continues to outline how exercise helps the immune system.  Not all exercise, though.  Moderation is good.  Heavy, long exercise can even suppress the immune system (if maybe only temporarily).  Nothing in science is easy or straightforward.  Plenty of graduate students have abandoned their PhDs because they couldn’t get over the contradictions.

After reading the review, I know a bit more about the immune system and its interaction with cancer cells (though the topic remains mighty confusing), but what’s the practical benefit?  In particular since the review warns that “there are no studies that directly link exercise-induced changes in the tumor physiologic microenvironment with changes in tumor immune response.”

Is the effort for nothing then?  This is hard to believe.  Absence of evidence is not the same as evidence of absence.  From the scientific facts outlined in the review, it seems eminently sensible to continue with the exercise program, always ensuring that I keep my effort controlled and my heart rate below the aerobic threshold.  With the kit I’ve assembled over the last few weeks, this is easily possible.  The only problem is my motivation, but if a possibly increased chance of survival doesn’t motivate me, what will?

For comfort and because it confirms what I think is right, I take one sentence from the review and run with it.  “Chronic treadmill training increased tumor cell cytolysis by peritoneal macrophages by 50%.”  This is where I want the action to happen.  Clearing the peritoneum of cancer cells is the most difficult task.  If exercise helps with this by even a bit only, it’s worth doing it.

On the road

The thing is this:  If you don’t hear from me, it’s all good.  If nothing happens, I have nothing to write about (and if that were the end of this blog, I’d be the happiest person in the world). If I lie in hospital or a chemo session keeps me immobile, my laptop is where it belongs, and I type away.  If I don’t write, there’s nothing to write about.

This is how it should be but last week showed that it’s not that easy.  The week was one story after another but I got around to summarizing it only on the plane to London on Sunday.  It had been a point landing.  Up to the last moment, it hadn’t been clear whether I’d be able to go on this trip at all, but then I woke up at three, fresh and full of energy.  I was on the train by 5:30, on the plane by seven, and at Heathrow two hours later.

Conferences are usually good fun because I hear interesting science and meet people I’ve known for years.  This time it was a bit different because of the secret I carry inside me.  The light-hearted greetings with their cheerful how are yous weighed heavily on me.  Was I lying or just keeping my privacy when I said, “All right”, again and again?  Or was I just answering in the context of that day?  One person who I enjoy talking to over beers asked about the time since we had last met, which happened to have been between my initial diagnosis and the operation.  How can I share anything?  Sharing anything means sharing everything, and a coffee break or a conference dinner is not the place for something so deeply personal.

It took me weeks to tell my colleagues at work about my cancer.  When I had bailed out at the last moment during a group meeting a few weeks back, I thought it’d be better to have individual conversations.  Better maybe, but not easier.  The only conversation I had was completely unexpected.  A colleague asked good questions and inquired about a day when he saw me hobble around as if I had massive back pain.  Instead of just brushing him off, I let him in.  We talked for quite a while.

At our group meeting last week, I framed the news as good news.  “I’ve just started chemotherapy”, I told them.  “This is the only way of beating the cancer inside me.”  It was a good strategy.  Some people were shocked but others relaxed enough to joke.  I should get a camper van and start cooking meth, one colleague told me.  He was right, but not as he had thought.  What I might need to cook is methadone, according to early, unconfirmed reports that this opioid might be an enhancer of chemotherapy success in difficult cancers.  A clinical trial is about to start in Germany.

After three days at a conference near Cambridge and two days at a workshop near Oxford, I’m back in Switzerland now.  A totally normal, uneventful week is drawing to a close.  I’m doing fine.  There’s nothing to write about.

Rollercoaster week

This blog is a confidant to hear my monologues and ease the emotional burden of my battle with cancer, sharing any doubts, confusions, fears or pessimism I don’t want to carry alone.  For me, writing is almost like talking to a friend.  It helps me cope.  I don’t get feedback and support, and there is no warmth in the page glowing back at me, but I can much better put my feelings into words that don’t seem inappropriate or inadequate afterwards.  If they do, I can always change them.

The blog is also a way of keeping my friends informed on my ups and downs, dishing out happiness when I’m doing well, and it’s an archive with better memory than me.  It can serve its functions only if I post regular updates.  Last week, I couldn’t.  To serve the documentary purpose of this blog and to reassure those who’ve been waiting for updates with some degree of worry, here’s a chronology of the last six days.

On Monday, I woke up with the first hints of a diarrhea that became stronger during the couple of hours I spent at work before walking over to the hospital for a scheduled consultation with my oncologist.  At his office, while we assessed the first chemo session – it went quite well, we agreed – nausea rose inside me.  I filled the bag the quick-witted doctor handed me with the contents of my stomach, went home, and slept for the next twenty hours.

I retain no memory of Tuesday, which probably means I felt poorly and spent most of it in bed.  I didn’t eat much and didn’t do much, besides feeble attempts at home office.  At some point a parcel full of sweets arrived from a friend in Italy.  It went unacknowledged until this morning.  In the evening, I should have ridden my bike, but the trainer remained silent.

On Wednesday I had to get up for an appointment with my surgeon whom I expected to declare me a physically restored person, cycling, running, flying and all.  To match the occasion, I felt much better.  The surgeon looked at my scar with calm satisfaction.  “You’re all good now”, she said, and I was free.  Things were looking up again.  I spent the rest of the day at work and the evening at a work dinner, mainly for the opportunity of eating good food without effort.  This I did, though laboriously, slowly and without any enjoyment.  My digestive system was still a bit cross with me.

Thursday was a normal work day, full of meetings, appointments and talks.  I had still not fully conquered the diarrhea that had started troubling me on Monday, but its strength was on the wane.  At night, I managed to pull a session on the trainer before good friends from college arrived for a short stay.  The raclette I cooked up gave me much needed calories, and I eat with pleasure for the first time in days.

I had taken Friday off to be with my friends.  We had breakfast in town, toured the place where I work and walked around Baden for hours celebrating our friendship.  It was a great day.  When they left in the late afternoon, I crumbled, out of nowhere.  I felt exhausted as if I had shoveled coal for hours.  My sense of duty to my body kept me awake through dinner, but by 9 I was gone, deep asleep until the next morning.

When I awoke on Saturday, I was almost as tired as the night before, struggling to rise from bed.  Flucha went shopping with the children while I tried to figure out what was wrong with me.  I had moments of elevated temperature, but the thermometer never gave me the reproducibility to justify a trip to the hospital.  That night at eight, after the kids had flooded the bathroom as if were a rice paddy and had to go to bed without stories or songs as a consequence, I lay down and was soon asleep.

When I woke up, on Sunday morning shortly after three, the bed and my pyjamas were soaked.  The bathroom scale later told me I had sweated out more than a liter.  Something had been wrong but it was right now.  I got up shortly after four, took a shower, had breakfast and made my way to the airport to travel to a conference whose attendance had hung in the balance until the very last moment.  I felt energetic, strong, relaxed – as if nothing had ever been wrong.