10. Measuring progress

Mile 7 – Still off course in the hills but making good progress.

Runners often set target times, typically trying to achieve a personal best. A ‘good for age’ time might help them with entry into one of the big races like the London Marathon, where 6,000 places are available (split evenly between men and women) for the fastest applicants who qualify by beating the target time for their age category. I would now have to be faster than 3:45:00.

I have often aimed at the 4 hour target, hitting it once bang on 4:00:00 at the Edinburgh Marathon and breaking it once at Brighton in 2015 with 3:49:55. Some people aim for much better than that.

Serious runners carefully plan their split times for each mile and keep track of their progress on their sports watch. The old school method is to wear a wrist band marked with the time you should pass each mile marker on the course.

Blood tests (or just bloods) are the split time equivalent for those tracking their progress against myeloma, as well as being essential in the initial diagnosis. Normally I have them taken every two weeks at the start of my hospital day visit, and they check my platelets (which have always been good so far) to see that I am in shape for my medication, and also my overall cancer levels. During the last couple of weeks I have not been at my best and I have had three extra sets of blood tests at hospital to try to identify the problem.

There are hundreds of things bloods can tell but I’ll stick to just three.

Last week I told you I wasn’t feeling very well and this week has been just as bad. For three straight days I was unable to eat (what a week to go off chocolate!) and spent nearly all day in bed, just getting up to go to the hospital for extra bloods and a CT scan. Bloods showed just how I was feeling through the aptly named CRP marker. It actually stands for C-reactive Protein, which is produced by the liver and released into the blood in response to infection or other inflammation. A friend who suffers from rheumatoid arthritis is very familiar with monitoring this.

The normal range is 0 – 5, but as you can see, mine went up to 167.

As a further investigation to see what was wrong, I was given a CT scan of the chest and abdomen to look for inflammation, but nothing was found in that. I am so grateful to my medical team for checking everything out.

In the end it seems likely to have been an infection, either bacterial (for which I am on a new antibiotic Levofloxacin) or viral (for which I already take Aciclovir). Either way, it looks as if I’m recovering now and I have been up and about and eating for the last couple of days.

The other two markers I’ll mention are relevant to my medium term target of reducing cancer cells before I can have a stem cell transplant. I’ll have to explain a little about immune cells (or immunoglobulins), with the help of Myeloma UK’s introduction Infoguide, so please bear with me.

The defective immunoglobulins created by myeloma are called paraproteins. They are the cancer cells in my blood that are not doing anything useful and disrupting bone renewal. Of course, they can be detected by bloods. The normal level is zero, mine were 16.2 g/L when I was diagnosed.

The heavy chains can be one of five types (G, A, D, E and M), each of which normally specialise in a type of immune protection. For me the ones that have gone wrong are type A, the second most common type of myeloma after type G.

The little cigarette butts on the sides are light chains, referred to by the Greek letters kappa (κ) and lambda (λ). It’s my λ ones that are a problem and on diagnosis they were outside the normal range (5.71 – 26.3 mg/L) at 486 mg/L.

My treatment plan is to go through the induction chemotherapy treatment for three four-week cycles, to reduce the paraproteins, before being considered for a stem cell transplant. They will be looking for a specific treatment response, namely a ‘Very Good Partial Response’ or above.

The good news this week is that, despite my struggling with infection, the cancer treatment so far has been doing its job, and there has been a “phenomenal” response (my consultant’s term) by the light chains in particular. My paraproteins have gone down from 16.2 g/L to 2.2 g/L (not far off the 90% VGPR target response) and my light chains from 486 mg/L to 22 mg/L (within the normal range).

Hopefully I’m nearly back on course and can resume the initiation treatment on Wednesday. So, come on then next week, what have you got?

Thanks for reading and take care.

P.S. Remember last mile’s quiz about the Analogue Addressable Outstation Intruder Alarm? Thanks to my nephew Steve (who actually knows about this stuff), it turns out that if I had unscrewed the plate from the wall it would have revealed the wiring for the sensors and alarms that connect up to the master controller. They are analogue because they are constantly monitoring and addressable to allow each sensor to be identified. Now you know!

P.P.S. I’ll tell you about this mile’s medication, Zoledronic acid, in the next post. I think you have had enough medical info already for one post.