Fact Free WA

On Tuesday two weeks ago a comment appeared in my Facebook feed about an ad for a “debate” with a visiting US anti-fluoridation campaigner. It was sponsored by Fluoride Free WA, who are contesting this weekend’s election. Of course it wasn’t a “debate”; just him spruiking his book ideas to people who want to believe.

The comment pointed this out, earning the swift reply that no-one will debate him, because he “destroys” any opponent. It was here that I entered, saying science works by evidence, not who has the Gishest gallop in a debate[1], and asking for theirs. Or, if they preferred, for their moral argument as I thought that there was one they could make.

The admins blustered a bit; I again asked for evidence. So they slapped down their trump card; The Lancet, the best journal, obviously, had identified fluoride as a neurotoxin. They were kind enough to give the doi and since I had half an hour on the bus, I read the paper.

It still amazes me that I can read journal articles instantly that used to take a week or more to come by post when I started at RPH. On my phone! On a bus! What a time to be alive.

Inevitably, it wasn’t what they claim. The Lancet of course never ‘identified’ anything, but did publish a review claiming to identify several new neurotoxins[2]. For fluoride they cited one meta-analysis of Chinese reports, Choi et al[3]. On first reading it’s a laudable effort. China has areas with naturally high fluoride levels, so Choi et al collated reports from the Chinese literature comparing IQ results from high & low fluoride areas. They found that the high fluoride groups was on average 7 IQ points lower. The methods looked reasonable, and it was bound to convince the fluoride free crowd, if they had ever read it.

But read closely, it is less than convincing. The original reports didn’t generally report the fluoride levels for their groups, although some were over 10 times our treated water, and some control groups had levels comparable to treated water. Nor did they control for differences in education or socio-economic status, which are known to have large effects on IQ. Much more than 7 points.

So I posted what I just wrote here. That got me called an anonymous coward (tricky, since my Facebook name is my real name) and a shill (for big fluoride maybe? who knows). The admins posted a list of supporters, with the bold challenge that there were “no quacks” on their side. My riposte was that about a quarter were indeed quacks, with no relevant training; Chiropracters, Naturopaths, Lawyers etc. Cue threats of insta-banning for name calling, despite my pointing out that they had invited the use of the term quack. Or maybe because I pointed it out, I forget exactly which.

I forget exactly, of course, because the whole thread mysteriously disappeared on the Sunday, as though it had never happened. I was also blocked from posting to their Facebook page. Six days of responses to my comments[4] and others, a thread of 30 or 40 comments in all, rendered down to two “this debate looks great” responses.

Sadly, I had not copied the conversation. By the time I was at a proper computer where I could, I’d fallen into a parallel universe where Fluoride Free WA Party never has to face the awful prospect of a reality doesn’t match their beliefs.

So my whole story can be summed up in that sage internet epigram; pics or it didn’t happen.

Thus the Fluoride Fearers of WA can continue to float along in their comfortable bubble of mutual reinforcement, smugly decrying the rest of us sheep who can’t see the Truth.

And the book selling tour rolls on.[5]


[1] I was quite proud of that phrase, and the saddest thing about this whole episode is that I can’t now point to my use of it. Maybe in my next letter to the Editor.

[2]
Grandjean P, Landrigan P. (2014)
Neurobehavioural effects of developmental toxicity. Lancet 13(3):330-338
doi:10.1016/S1474-4422(13)70278-3

The Lancet is behind a paywall, Choi et al is Open Access. Leave a comment or email if you want to read either paper.

[3]
Choi A, Sun G, Zhang Y, Grandjean P. (2012)
Developmental Fluoride Neurotoxicity: A Systematic Review and Meta-Analysis. Environ Health Perspect 120(10)
doi:10.1289/ehp.1104912
Note that Choi’s et al includes the same Grandjean as the Lancet review.

[4] There were a couple of other topics. After repeated assertions that The Lancet had ‘identified’ fluoride as a toxin, and no response to the substance of my comments, I asked if they had even read Choi’s paper; I’m pretty sure none of them had.
I was told I had ignored their moral argument, so I asked them, for the second time, to make one. I even agreed that there could be a sound moral argument against widespread fluoridation.
I was accused of not knowing the difference between dose and level. I asked them to point out where I had confused to two.

Sadly, their witty and instructive replies to these comments must have been delivered in the alternate time–stream, as they never appeared in this one.

[5] Of course he is selling his books. They always have something to sell. Usually found on the right wing, but also on the left, there are plenty of people who “love low information voters”.
For an history of this in the context of US politics, see this excellent essay by Rick Perlstein.

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Posted in denialism, politics | Tagged , , , | 3 Comments

the eyebrows strike back

As the new growth bursts forth in the Spring, so has my hair returned. Eyebrows first.

eye-hair-3
<Attenborough>No one knows why the eyebrows return first, with the thawing of Winter, but they do. Followed closely by the eyelashes, the most useful of all the body hairs. These shy, gentle and often overlooked facial hairs return quietly but swiftly; almost overnight. And with their coming, we can know that change is on the wind and the season is about to turn.
Where the eyebrows lead, others will soon follow.
</Attenborough>

As a sign of my recovery, not from my lymphoma but from the treatment I went through to kill it, my hair is slowly coming back. My calves still look like they’re in training for the Giro d’Italia, but there is soft fuzz on my scalp.

That’s no space station...it's the forest moon of Endor

That’s no space station…it’s the forest moon of Endor


It’s quite odd. These are brand new hairs and have never been cut, so the tips are tapered. Thus like a baby’s first head of hair mine is soft and velvety. Very touchable. If you like that kind of thing, which I do.

It’s nice to know that at least most of my hair will come back, and about the same colour as before (mostly grey). It will come as a relief to many that this includes my beard, so soon my face will be decently hidden again and people will not bear the burden of looking at it all the time.

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the last PET waltz

Written some time ago, on the occasion of my last PET scan, but not published until now as work keeps getting in the way of blogging.

Sitting in SCGH nuclear medicine again, waiting for the results of my last PET scan. The sandwiches look the same. They may indeed be the same sandwiches. It’s hard to tell.
PET scanning is quite boring for the patient. After a cannula in my arm I got to lay down on a reclining chair in a lead-lined alcove. You can’t tell it’s lead-lined except for the discreet sign on the wall telling you so. SCGH being built years ago it probably really does have lead in the walls, rather than in the water as is the current fashion.

A lead box on wheels sits outside the alcove. It is in fact a very stupid robot with the dangerous task of injecting the radioactive tracer into my arm via a cannula fed through the shielded wall.

I then get to lie quietly for an hour in the darkened alcove while my cells take up the labelled glucose to use for fuel. Being basically glucose it the cells gobble it up fine, but leave the radioactive fluorine behind in the cell, a bit like the wrappers from a Happy Meal.

Then on to more dynamic lying very still, this time in the scanner. After a quick pass through for the CT part, the PET part is very slow, advancing by 10 cm steps every 5 minutes or so. To avoid cooking me and everyone else in range they only give a modest dose of Fluorine, which means waiting to detect enough counts. You can’t rush the physics.

Thus we progressed along my whole body from toes to top of head, by intermittent 10 cm steps. Very high tech, very stately. Very time consuming.

It turns out they are so busy that no one has time to read my scan. The Nuclear Medicine Physician makes some quick notes about my condition and sends me on my way, merrily irradiating all and sundry around me. Off to RPH to try to max out my colleagues personal radiation monitors.

Since writing that I can confirm that the scan was clear of lymphoma. There are some lesions  in my lungs, a consequence of the drugs I took to kill the lymphoma. They’re not serious and shouldn’t cause me any problems. 

The hot spot in my right calf is still there, although much reduced. I had a big lymphoma node there, and some of the activity is probably scarring from that. I still have some symptoms from an injury in my calf before I was diagnosed, so some activity may be from that.

But it’s not lymphoma.

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spring has sprung

Spring has sprung and while the grass may not have riz, parts of my facial hair have. I had already had a return of hair in the long gap between my last chemotherapy and the BEAM treatment to clear out my bone marrow ready for the stem cell transplant.

The last drug of the BEAM, melfalan which is the M, put a stop to any hair return and it all disappeared again about 10 days after the melfalan. Now it’s coming back, slowly, but the pattern of the regrowth has been surprising.

When I lost my hair it seemed to go from the middle out. Both on my face and my body the hair persisted longest the further away from my midline. I managed to keep some on the outside of my forearms and calves all through the treatment. The hair on my head seemed to just go from all over, passing swiftly through a Bernie Sanders phase before gradually fading out to nothing.

I expected the hair to come back in the opposite order, but that’s not happening this time. I am getting quite a lot of beard and moustache return around my mouth in a kind of faded dude-bro goatee. Maybe that’s just how things are in the post-Trump world and I just have to grow racist, misogynist facial hair. At least I can shave it.

More annoyingly, my eyebrows are very slow to wake up and my eyelashes have persistently refused to return to work. This is the biggest problem I have with hair. I can wear a headscarf to cover my bald head, and bulk it out so my hats still fit, but I can’t replace my eyelashes. 

In the words of Joni Mitchell, you don’t know what you’ve got ’till it’s gone. I won’t say my eyelashes were paradise, but I’d rather they weren’t paved over. I find I get a lot more grit & dust in my eyes without eyelashes. It’s not life threatening, unlike the lymphoma, but it is annoying.

It must be a good sign that I’m feeling well enough to worry about something like missing eyelashes.

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breaking radio silence

Long time readers will be aware that I was discharged from SCGH on the 23rd, but I have posted virtually nothing on this blog since then. The obvious conclusion is that my springs of invention have run dry, as indeed they may have, but there is a more mundane explanation. I’ve been a bit tired.

I am now feeling reasonably well, but for two weeks after coming home I had a low grade fever that made me feel unenthusiastic about everything, but wasn’t bad enough to send me back to SCGH. On the 9th of November I saw my haematologist who thinks my lymphoma is probably gone, but we will need to wait for my PET scan in 4-5 weeks to be sure.

After that… well, there is a fair chance of the lymphoma coming back, so I need close monitoring for a bit. Monthly, then quarterly, then annually out to five years. The risk decreases quickly and after five years we can say that this lymphoma is gone. If I get another lymphoma it’s just getting lucky, not a recurrence. The treatments also give me a slightly increased risk of other cancers, but only for 5-10 years.

Except for skin cancer; I have to be extra cautious about that forever.

So, we can reasonably say the stem cell transplant worked. It didn’t kill me or even do much permanent harm and the lymphoma appears gone. My stamina is pretty low still. Some days are good, others less so. But the good days are getting more frequent. It’s just a matter of time now. After the BEAM therapy (to kill my bone marrow) mowed down my slowly returning hair follicles, like early daffodils in a hard frost, I am again starting to get some regrowth.

I have, however, lost my immune memory. That means that once my system is strong enough to tolerate it (3 – 6 months) I need to get all my vaccinations again, from MMR up to Hepatitis B. That will take another 6-9 months, just to get through them all. As it is the childhood schedule, I shall be demanding lollipops. I wonder how long I can hold my breath?

Such fun. But so much better than the alternative.

Posted in chemo, chemotherapy, meta | 3 Comments

it turns out the news is all about me

Last night the ABC news had a story about the deadly drug-resistant cat salmonella. Don’t be alarmed, they said, it’s only a danger to the very young, the very old and immuno-compromised people. 

Which is me now. Yet another reason to avoid those evil bird killing death no gets.

Then this morning’s West Australian headline was STATE TURNS TO POT Libs backflip on medical cannabis. Right when I don’t have a legitimate excuse to get it any more! No PBS subsidised weed for me, I will have to keep paying the outrageous street price.

Thanks Obama.

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with one bound he was free…

As chronicled in todays lucky number is 38 and checking in at the NHMS Hilton, I was incarcerated in SCGH for the term of my neutropoenia. I was planning a series of posts about daily life on the ward, but being a patient takes a lot of time; especially when on a fluid balance chart which required me to record every liquid input and output from my body, 24 hours a day.

img_1767

the jugs here are really cheap, but the beer’s rubbish

This was because my blood pressure has remained persistently low after the BEAM. Dehydration is a common and obvious reason for low blood pressure, so they started pouring water in to me. Also a litre of saline drip overnight. The trouble with filling up the human body with water is that there’s a hole in the bottom where the water leaks out. Three litres a day in meant 3 litres a day out, so I didn’t get a lot of sleep. It didn’t help raise my blood pressure at all. When the consultant came on Thursday he said they often saw low blood pressure after BEAM. No one knew why, but he didn’t think it was a problem so they could take me off the fluid balance chart. No more measuring my urine every time I needed to go! And fewer of those times as I cut back to 2 litres a day.

But the main thing that stopped my long series of posts that I would eventually parlay into a 12 part direct-to-video mini-series was that they let me out.

You will recall when my temperature went over 38ºC I was immediately admitted. Infections with neutropoenia are no joke. I know of cases here in Perth where the patient was dead in a few hours after the first temperature spike, despite being treated within the hour. So to the ward I went, there to have the broad spectrum antibiotic Tazocin injected into my CVC every 8 hours. Have I said how having a tube stuck into your jugular can be absolutely worth it? Well it is, when you need it.

If my temperature was cased by any of the common bugs, Tazocin would cover it. Meanwhile my blood, urine and stool were cultured to see if they could find exactly what bug it was. I also develped a florid spotty rash across my chest and upper back – folliculitis or infected hair follicles – just like the first two chemo cycles when I also had profound neutropoenia. This was a worry as there was a good chance it was fungal, and a fungal infection would laugh at Tazocin. Anti-bacterials would just mow down the competition, leaving the field clear for the florid overgrowth of noxious, oddly coloured fungus. Just like the Republican nomination race.

img_2031

Saturday I was allowed out for coffee.

Rashes are notoriously difficult, that’s why there is an entire branch of medicine devoted to looking them up in picture books and guessing the closest match. So a dermatology consult was called for and on Friday they took some punch biopsies from my chest for pathology. These are just what they sound like; a sharp 4mm diameter tube is used to cut a small circle out of the skin. Fortunately with local it doesn’t hurt much, but for someone with no immune system and very low clotting factors it was a bit of a risk. I bled a lot more than she expected, but not so much as to be a problem. They were, after all, only flesh wounds.

Throughout, my blood pressure stayed low, but my platelets only dropped slowly and my neutrophils rose steadily. All good signs. So good in fact that by the ward round on Sunday morning they decided they needed my room more for someone who was properly sick than for me. I called Pam, collected my clothes into some plastic bags and went to sit in the visitor’s lounge so they could get my room ready. While I was waiting, Catering found me and brought my lunch around, which was very nice of them. A quick goodbye to the excellent staff on G73 and we were back to the People’s Republic of Fremantle again.

Admitted Tuesday afternoon (stem cells day 6), discharged Sunday morning(stem cells day 11). They tell me that’s pretty late in and early out, which has to be a good sign. I am still on parole, though, and need to report Monday to the clinic to get more blood tests and examinations.

But I’m home.

Posted in chemo, chemotherapy, meta, Stem cells | 3 Comments