The treatment conversation III and IV

3 April - another busy day.

Chris and I met the chemo oncology consultant and the chemo pharmacist, and I started to feel the confusion of all the tests that have to be done and when they have to be done and where they are done and which lists you need to write your name on and where you have to wait...
4 April will definitely see me back at UCLH for the GFR - glomerular filtration rate test - injection of Chromium 51 (gamma radiation emitter with half-life of 27.7 days) followed by 4 hourly blood samples to see how quickly your kidneys eliminate it. Carboplatin is entirely removed by the kidneys and paclitaxel partially, so they need to know that your kidneys will manage.

What else did we learn that's new?

Makes sense to have a BRCA gene test - I don't have breast or ovarian cancer in my family, but we're a small tribe, so might simply have slipped through on probabilities. In due course...

I'll be given i.v. anti sickness, anti histamine and steroid premeds before the chemo itself, followed by take-home anti sickness and steroid pills.

Fast-moving infection/sepsis due to reduced white blood cell count is a low frequency, high consequence side-effect to be recognised and treated fast (A and E arrival to i.v. antibiotics target = 1 hour). Probably the main reason why the summer Russia trip might be ill-advised, especially as the travel insurance will probably be invalid, despite the  oncologists being prepared to provide letters etc. Boohoo again.

I was interested in whether the cancer might be controlling me in any way, sending out hormones to influence my behaviour in the way that parasites of animals and plants, and our own gut microbes do  - drew a blank here though. I had wondered if it might be telling me to do or eat certain things to favour its own growth - bastard thing.

Also, despite it really being the least of my worries, I asked about using the cold cap to combat the hair loss caused by paclitaxel. The consultants suggested it wasn't very effective with this compound and the pharmacist said the research was mixed - more on this at a later stage but <<flash forward>> I did  go for it and this is what it looks like on me:


19.4.18 - Day 14 - had a haircut yesterday. I look like a bit like Grayson Perry but the hairdresser says not much came out as she very carefully sprayed and wide-combed. Absolutely no blow drying! Follicles now seem to be gripping tight again. Perhaps yesterday's moult was a false alarm?





Comments

  1. Unknown19 April 2018 at 14:07

    Thanks for the blogs to date Jan. So well written. I appreciate the detail. I think we could call these trials your winter vicissitudes (bookclub maties will get that ref).

    Trust you to be inquisitive and wonder whether the cancer could be controlling your behaviour in any way: ‘telling me to do or eat certain things to favour its own growth’ - What a turn of phrase! Take it away Prof. Maybe this blog can help you to track that.

    BTW you look very fetching in those wigs darling; not so much in the cold cap – but needs must, eh, and clever to reduce the blood flow to your scalp.

    Keep writing. Keep the ideas coming. Les x

    ReplyDelete
  2. Unknown20 April 2018 at 01:06

    By coincidence, I just heard 3 different speakers on this morning’s R4’s Today prog, talking about the connections between the immune and inflammatory systems and mental health.

    It’s on a different tack from your inquiring thoughts Jan, about whether cancer can start to influence your behaviour, in that they are focussed on depression, but could be linked.

    1) Prof Edward Bullmore book, The Inflamed Mind, which will be published this week.
    https://www.waterstones.com/book/the-inflamed-mind/edward-bullmore/9781780723501
    It suggests the patients were not simply feeling happier as they were in less pain, but that something more profound was going on.

    2) See also older R4 prog, of same name, The Inflamed Mind, from 2016: http://www.bbc.co.uk/programmes/b07pj2pw, which asks whether the immune system can alter the workings of the brain.

    3) And the accompanying BBC article, Depression: A revolution in treatment?: http://www.bbc.co.uk/news/health-37166293

    4) And I found this 2015 Lancet Psychiatry article: ‘Mind and antibody: the return of immunopsychiatry’, about the effects of an immune system attack.
    http://www.thelancet.com/pdfs/journals/lanpsy/PIIS2215-0366(15)00057-7.pdf
    “One of the hottest, even inflammatory, topics in neuropsychiatry today is the association between psychosis and NMDA receptor antibodies.”
    Separately I read that NMDA receptor antibody encephalitis, is caused by an immune system attack, and is associated with tumors, mostly teratomas of the ovaries.

    I think they should broaden their research questions Jan, to investigate associations between immune molecules and the widest range of behaviour changes – not just depression.

    Les x

    ReplyDelete
  3. Unknown21 April 2018 at 12:57

    Horribly interesting stuff Jan. Blimey you are brave. Nice hat! And some of those wigs! I dare you...
    Something extraordinary about about the processes and procedures... They better work..
    Keep fighting you,
    Mark
    Xxx

    ReplyDelete
  4. Anni28 April 2018 at 15:35

    Yes "horribly interesting" is true - we're all learning a lot from you Jan in many ways! You do look great in that hat. Thinking of you lots and am in awe of you and your blog - I'm holding on to this brilliant connection between you and us, your friends and supporters! Thank you - All strength to you Jan, Love Annabelxxx (sorry I'm not as good as you at finding the right words - new to blogging/commenting -feels a bit like public speaking as I hesitate over the "publish" button!!)

    ReplyDelete
  5. Unknown26 July 2018 at 03:34

    More this week, on parasites influencing our behaviour: https://inews.co.uk/news/science/why-a-common-parasite-could-turn-you-into-a-business-mover-and-shaker/

    ReplyDelete

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