the mysteries of oncology

This (Thursday) afternoon: an appointment with Doc Tsoi. We met in hospital then again on 21st Sep. Today's meeting was set up at that 21sep meeting... neither Deb nor I can remember being given a specific reason to meet. Progress report, perhaps?

I have a few questions, I sent an email, I'll work through the points below. My impression is that Doc Tsoi is looking at her pc screen -- while Deb & I are in her office -- as her first preparation for the meeting. Of course I could be wrong :-)

I'll paste in my email. If I'm really clever, the email will be in italics. What we found out will be in not-italics:

... Is the government's "new brain cancer strategy" relevant to me?

This is a big government / media announcement that there will be a big push on research into *brain* cancer. Especially children's brain cancer. The doc was dismissive. Researchers will be happy, she said.

So, I commented, the only relevance to me is that I may as well leave my brain to science. That almost raised a smile.

... Can the latest (pre-abdominal treatment CAT scans) be made available to *public* health system. So my son (the one you met) can access them.

No, the scans are on either the public or private health system.

Which sounds like nonsense to me. I'll ask Genesis, they did the scans, they may be able to share the results. At least I'll ask.

... I get pins & needles feeling in feet (and very occasionally in hands). Is this a worry?

Ooohh... never heard of that one. No further comment. I guess that I read more Wikipedia than the doc: it's "peripheral neuropathy". No direct relationship (per Wikipedia) to any specific aspects of my treatment. My main concern is that I do have it.

... I get very occasional "cramping" in hands, feet. Is this a worry?

... Very mild, occasional headaches... possibly due to warmer weather. Should I worry?

We decided to agree that these could be caused by mild dehydration in the warmer weather.

Current referral -- to Mr Lam -- will expire in December. So I will need a fresh referral.

... What date will the current referral expire?

... Which doctor should the new referral refer to?

... Do I just ask my GP for a referral or will she need a specific reason?

The receptionist had answered this one. Having read the email when we arrived. The current referral will expire on 03dec. I'll need a GP referral to *both* Mr Lam and Doc Tsoi. So I'll set up an appointment with Dr P in late November... This sets a last-date for any trips away from home.

Current radiation+chemo treatment will end on 21st November.

... Will there be post-treatment appointments? When? With who?

... Will there be a post-treatment brain scan? When? [four weeks later, on 19dec17?]

... What drugs will I be on for the four weeks after 21nov?

                 Levet... yes? 

                 Dex+Panto ... no? 

                 Septrin+Temo ... no?

Deb & the doc call "Levet" by some other name... "Capra"? Whatever it's called, it's the anti-fit drug. I *will* continue with that one -- under Doc Tsoi rather than Mr Lam. The doc wrote a fresh prescription for it.

Dex+Panto, I'm to follow Doc Harper's instructions... (He hopes to reduce it to zero by the end of radiation.) There was some comment about gaining weight... which I am... but I have no idea if it was an expectation or a requirement.

Septrin+Temo both stop on the last day of radiation treatment. Which is 21nov. And I can then stop the weekly blood tests, too.

Blood tests? White cell levels? All fine, apparently.

When will the abdominal radiation be happening? asks Doc Tsoi. It's already started -- and will end within days of the brain radiation. Oh, that's very good, she says.

I may be under the care of a "medical team" but they are really just several doctors who occasionally discuss what should happen next. Genesis has started zapping my gut -- and Doc Tsoi does not have that in her own records. Hmmm :-( Each an expert... but it's not a "team".

Next treatment will start "after about four weeks"

... When will that timing be decided? [After brain scan?]

... Will it be chemo or chemo+radiation? Is that yet known?

The non-treatment gap will be exactly four weeks. Next treatment will be just chemo, no radiation. We set up a next appointment with Doc Tsoi for 14dec17, she will provide prescriptions for Temo. Plus, possibly others? I'm not taking Kytril and I don't get nausea so that may limit the extras. Except for the anti-fit which will continue... For six months from the fun run according to the original thinking.

I will also need a blood test, a day or so before the appointment. Another pre-treatment baseline? The Monday before should work, Deb can drop me off on her way to work.

The brain scan will also be a baseline... Any changes till then (four weeks after chemoradiotherapy) could be due to... ?? I think she meant, the brain just fitting itself back round the gap left by the tumour. Who knows! Anyway: The next brain scan will be a baseline. Followed by six months of chemo. Then another brain scan -- which will (or may) show whether (or not) anything has changed.

So there's no indication of progress or otherwise, I ask? You look well, she replies, That's a good sign.

As I understand it... the brain scan timing will be set by Genesis. So I'd better ask Doc Harper when it will happen. It could be another limit on when we can go away. (Speaking of which: we are narrowing our holiday aims. Forget Victoria, we may just see the southwest of WA.)

The six months of treatment will be on 28-day cycle: Days 1 to 5, take a tablet. Days 6 to 28, no tablet. Then start again. And again... and again... With brain scans to measure progress? Not mentioned. And drat, I didn't think to ask!

In earlier posts I said that I'm in limbo... no results so no knowledge of whether anything is "working". I expected the next brain scan to give some indication... Nope, no such luck.

Looks as though it's time to just... accept that something has changed, or not. Nothing I can do about it. (Nothing more.) Something may change, or not. Many more months of... limbo.

Oh well, that's life! Or not :-)

Better get used to it! No worries :-)

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Dr Nick Lethbridge / Consulting Dexitroboper
Agamedes Consulting / Problems ? Solved
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"If I had asked people what they wanted, they would have said faster horses." … no, not said by Henry Ford

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Now much more than a clever name for a holiday journal:

 https://notdotdeaddotyet.blogspot.com.au/  :-)