Tag paraprotein

Weekly round-up February 17th 2013

Weekly hats week ending Feb 17th 2013

Weekly hats week ending Feb 17th 2013

This was an interesting week and the data gives a good representation of it’s peaks and troughs.

I have been in discussion to exhibit work arising from the project’s data. This made me feel full of energy and generally very creative and happy as can be seen in the highs of mood and stoicism mid-week (8 and 7 respectively). I’m not tracking creativity but if i was it would be an 8 out of 10. Ironically since my illness came back I’ve had more time to make work than before. Shame I had to develop incurable cancer to get into this position.

I have been working a lot on the project which has been great but by the end of the week I was beginning to feel tired and my back is sore, again reflected in the discomfort index which reached 4. This could be because I’ve been sitting down a lot and not getting as much exercise as I should, or it could be a symptom of the illness. I shall have to keep my eye on it.

The beginning of the week was challenging, my hair started coming out in clumps which initially was a bit of a shock (plunges in control and mood indexes). I’ve had what’s left shaved off and developed a hat index to account for the headgear I’ve adopted. I also developed a stoicism index to accompany the other mood and affect indexes.

I finished my first cycle of chemo which was a milestone and to which I have had only mild side effects, and I had an important meeting with my specialist where I got my paraprotein results which were good. No detectable levels (again reflected in higher mood, control and stoicism scores).

The scores on the doors

For the key to these please look at the Data Methods part of this site

Hats: (Beenie grey x 3, Bucket hat x 2, Blue note Mod x 1, Patterned beenie x 1)

Stoicism: a low of 4 (Stiff upper lip) and a high of 7 (I feel fine), mostly 4-5 (stiff upper lip)

Mood: a low of 5 (subdued) and a high of 8 (cheerful and in good spirits), mostly 6 (calm) and 7-8 (cheerful and in good spirits)

Control: a low of 3-4 (little control) and a high of 7 (a good deal of control), mostly 5 (some control ),

Discomfort: a low of 2 (mild) and a high of 4 (moderate). Mostly 4 (moderate)

bone_marrow_6My bloods (Haemoglobin, White cell count, Platelets, Neutrophiils) all stayed stable and in the normal range.

I had the results back from my bone marrow biopsy (image left) and Bence Jones Urine tests, no detectable levels of Paraprotein.

I consumed a total of £771.45 worth of drugs which included chemo and antibiotics.

Thank God for the NHS

Paraprotein levels February 14th

Paraprotein = 0

No detectable level after bone marrow test and bence jones urine test. Good.

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   

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