cobaltowl

We'll cross that bridge when we find it

Last update: 07-12-2024

My lymphoma treatment, in numbers

18-08-2024

Why?

One of the things that bothered me about researching treatment information online, was just how little of it included statistical data.

Although, yes, survival rates vary wildly, and in turn, treatment routes may vary, I decided to compile information on my treatment (Escalated BEACOPP, 22 years old at the time) for stage IV-B Hodgkin's Lymphoma, including things that are not particularly useful, but neat to a statistics nerd.

Travel

A lot of my travel, thankfully, was covered by the NHS' excellent Patient Transport service. Volunteer drivers and dedicated drivers alike helped me get through treatment by greatly reducing travel costs, as I could not use public transport and taxis averaged £25 per trip.

Medication

Medication was also provided by the NHS, however, for simplicity's sake, I'm only counting medication administered at home, not in hospitals, as I did not keep a tally of those.

Name Doses (PC) Doses (C1) Doses (C2) Doses (C3) Doses (C4) Doses (PT) Doses (Total) Cost per Dose Cost (Total)
Prednisolone 0 14 14 14 14 0 56 1.986 111.216
Aciclovir 0 63 63 63 63 276 252 0.091 22.932
Fluconazole 0 21 21 21 21 0 84 0.122 10.248
Co-trimoxazole 0 9 9 9 9 39 75 0.0578 4.335
Omeprazole 0 21 21 21 21 0 84 0.22 18.48
Ondansentron 0 8 8 8 8 0 32 0.309 9.888
Metoclopramide 0 63 63 63 63 0 252 0.052 13.104
Filgrastim 0 8 8 8 8 0 32 79.05 2529.6
Allopurinol 0 7 0 0 0 0 7 0.035 0.245
Mesna 0 0 2 2 2 0 6 45.54 273.24
Dalteparin 14 21 21 21 0 0 77 1.858 / 3.529 169.802
Co-amoxiclav 0 0 15 0 0 0 15 0.235 3.525
Amoxicillin 15 0 0 0 0 0 15 0.062 0.93
Doxycycline 8 0 0 0 0 0 8 0.127 1.016
Potassium Chloride 0 0 18 0 0 0 18 0.099 1.782
Apixaban 0 0 0 0 42 184 226 0.05 11.3
Total 1465 3181.643

*PC meaning pre-chemotherapy, and PT meaning post-chemotherapy

All costs are based on the NHS indicative price (cost per pack/number of doses), and are supplied by the British National Formulary. The supplier used for the calculations is the same one that provided my doses in actuality, although in cases where it was unspecified (such as prescription boxes), the lowest value between all suppliers was selected.

Note that dose counts predating the first cycle are an estimate from the back of my head, as I was not yet diagnosed and didn't bother keeping track.

Radiation

Type Amount (PC) Amount (C1) Amount (C2) Amount (C3) Amount (C4) Amount (PT) Amount Dose (mSv) Total Dose
PET-CT 1 0 1 0 0 0 2 8 16
CT (Chest) 1 0 0 0 0 1 2 6.6 13.2
Chest X-Ray 1 1 2 0 0 0 4 0.014 0.056
CT (Pelvis and Abdomen) 0 0 0 0 0 1 1 7.7 7.7
CT (Head and Neck) 0 0 0 0 0 1 1 1.2 1.2
Total 3 1 3 0 0 3 10 38.156

Only radiation from diagnostic procedures was accounted for, and all sources are listed, although the numbers are not exact as I have not considered different factors such as height, weight and dosage of radiotracers in my calculations (150MBq, roughly, but that is not included in the graph).

Procedures

You give them blood, blood, gallons of the stuff

A number of different procedures were part of the treatment, some as part of unplanned hospital stays due to infections and complications, and others (PET-CTs, 2 blood tests per cycle) as part of routine accompaniment of the treatment.

Procedure Amount (PC) Amount (C1) Amount (C2) Amount (C3) Amount (C4) Amount (PT) Amount
Blood Test 3 21 13 2 2 1 41
Blood Transfusion 0 0 1 0 0 0 1
Chest Drain 0 1 0 0 0 0 1
Tissue Biopsy 1 1 0 0 0 0 2
Skin Biopsy 0 0 1 0 0 0 1
Unplanned Hospital Stay (days) 2 6 5 0 0 0 13

On average, each blood drawing session took around 20 ml of blood, done through the PICC line for the most part, thankfully.

Non-numeric observations

PICC line

I've used a PICC line continuously on my upper arm since the first cycle. It has been an inconvenience, but it is an improvement over getting stabbed by cannulars on every visit.

Overall, there was no pain, bleeding or complications resulting from PICC line use, but dressing up became much harder, as tops would get stuck on the PICC line lumen (tail). Extending my arm also resulted in a bit of discomfort.

Sleeping was not affected significantly, sleeping on my side was still possible.

Symptoms/side effects

Lymphoma is characterised mainly by two symptoms, other than fluid deposition in the chest area: night sweats and fever. These have gone away (mostly) by the first cycle, with night sweats returning at times (although I think this may have been exacerbated by the warm weather in June).

After receiving a chest drain, my chest was no longer constrained by fluids. Funnily enough, at one point I was limited to 1.5 lungs, since one was visibly "blackened out" in a x-ray after too much fluid.

Post-chemotherapy side effects were effectively a sinewave, varying from cycle to cycle. Cycles 1 and 3 were "light", effect wise, but 2 and 4 were worse. At its worst, it feels like a prolonged, 2 day long hangover, with headaches, thirst, mental fog, nausea and fatigue.

Hair loss

Up until the start of the second cycle, there was minimal hair loss, although my beard did not grow back at all. Hair loss started at the beginning of the second cycle, however at the time it was minimal and substantial hair remained, although much thinner (and slightly ligther in colour).

Sources

Radiation

Medication costs