Summary January 2013

January is a month of tests; my treatment also started.

chemo drugs

I have been turned into a human pincushion; I have consumed over 3 k worth of cancer drugs; I have been biopsied and had a very nice doctor dig around in the bone marrow in my hip; I have been infused with various toxins: Adriamycin, Velcade, Dexamethasone. I take a number of drugs to alleviate nausea and to prevent my immune system from collapsing. I rattle like something that rattles a lot.

All the data files, documentary images and graphing referencing the above you’ll find below this post.

1. bence jones urine test over 24 hour period. 2. bone marrow sample.

My mood has been steady aside from a dip around week 3 when I misunderstood something that I read in one of the summary letters received from my specialist which I interpreted as a very poor prognosis. It wasn’t. This also impacted on me physically, I felt out of sorts and my bones grumbled under the extra stress. I also felt less control over things in general. I’m sure I wasn’t good company. My specialist cleared up the misunderstanding and after 2 days of anxiety everything picked up. I should know by now not to go to the Internet.

1. Adriamycin being delivered, 2. Saline drip

Physically I haven’t felt too bad either, I only really started getting side effects at the end of the month and these were very mild. My hair hasn’t dropped out. Yet. I had some mild discomfort in my lower back as my spine was impacted by the MM but the rib pain is barely noticeable now. My neutrophils, Hb, WBC and platelets were steady but slightly dropped in the first week of Feb. Still no news on my urine and bone marrow tests which will show the disease progression more accurately. I’ve continued to work pretty much as normal. I had some work in an exhibition in town. This helps mood and maintains normality despite everything.

More bone marrow samples

January 2013 raw data

Word doc of a CSV will need  to be converted to a txt file

For key to data scoring see templates under the Data Methods menu

mood_jan_13 | discomfort_jan_13 | control_jan_13

urea_jan_13 | Protein_jan_13 | drugs_jan_13 |  full_blood_jan_13

Affect data January 2013

Mood, discomfort and control trackingmood_Jan_13



Medical Data January 2013

Drugs consumed, injected, given by line etc.drugs_jan_2013HaemoglobinHB_Jan_2013NeutrophilsANC Jan 2013Plateletsplatelets Jan 2013 White Blood CountWBC Jan 2013Proteinsproteins_jan_2013Urea, Calcium, Creatineurea_jan_13

Costs to the NHS of my drugs first cycle of treatment Jan – Feb 2013

 chemo first cycle

Velcade 3.5mg vial, with an NHS cost of £762.38/vial.

I’ve had 4 injections this month so that adds to:   £3049.52

Dexamethasone 160mg                                                  £10.83* approx. costs

Adriamycin 68mg                                                          £187

Zometa 4mg                                                                   £17.17

Cost of supporting drugs

Lansoprazole 2 mg                                                       £1.86

Co-trimoxazole 960 mg                                               £7.06

Aciclovir 200 mg                                                         £12.50

Allopurinol 300 mg                                                     £1.06

Domperidone 10 mg                                                   13.88

Total drugs cost first cycle:                                £ 3300.88   

All work is licensed for use under the following Creative Commons license. You are free to use/reuse it as long as you contact me first to say how, and use appropriate attribution.

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License.


4 Comments so far. Leave a comment below.
  1. Anita Berlin,

    Dear Tom , you start with the beanie and end with the cost of domperidone…and so much in between ….it beautifu,l moving and amazingly informative (sorry, a doctors speaks) – hope back pain is going away and paraproteins are behaving …

    thinking of you (and peg of course)

    • Anita thanks for your post. Paraproteins are undetectable at the moment in bone marrow, bloods and urine. I am officially boring according to my consultant at UCLH. If I hadn’t had an MRI just before xmas we would never have known.

  2. GayF,

    Tom:… loving your work… looking forward to getting my head around metastasising as you deconstruct it, and elucidate, over time…(banner is superb). Keep expanding the hat collection. Much love from Sydney – gx

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: