Living With Incurable – Decision Making

It is fair to say that the knowledge and opinion on how to treat multiple myeloma are evolving. The regimen that the French government has provided for the wife is not yet available in England and Wales because NICE have not yet, perhaps, completed their bean counting cost benefit analysis. The situation is different in Scotland.

All the studies I have found so far in the literature are “old” and have used less effective treatments before high dose chemotherapy / autologous stem cell transplants. This one published in the New England Journal of Medicine {2003} has 200 people in each of the groupings, one for single stem cell transplant and one for tandem. That is not a large sample, so a 95% confidence interval does not fill me with confidence. This kind of epidemiology cannot take into consideration the very heterogenous nature of the disease. It is difficult to conclude specifically from the general, though there may be a temptation so to do. One cannot ask, “tell it to me straight Doc, how long have I got?”

The graphs for overall survival diverge significantly at ~ 48 months. Before that they are roughly colinear up to ~36 months.

The other graph here is for event free survival which means no relapse. From this limited data set the second transplant has a better impact on avoiding “events”.

I will be digging into this in more detail over the coming days.

Since I was stupid enough to agree to develop a course on decision making, I have been very interested in the act of deciding. Being real we have to ask, “would you prefer to die in France or the UK?” We know that it is impractical in the long term for me alone to maintain the garden at a standard that I/we would be happy with. Therefore, the decision to move has in effect been made. We also know that at some stage the disease will return, it is incurable. There are many unknowns and for the time being some unknowables.

This illness arrived during a global pandemic and is being treated as there is a war on mainland Europe. Energy and food security are insecure, and it looks like the economies are going into a very inflationary epoch.

I guess the best way to live with this incurable thing is to remain as present focussed as possible but there has to be some sense of what do we do, how might we best place ourselves moving forward.

We have one strong criterion for a new abode and that is relative proximity to a hospital specialising in myeloma treatment.

There is an upcoming decision, which may not be ours to make concerning a second high dose chemotherapy / stem cell transplant.

We know we could afford a smaller abode in France; the choice of area is much more limited in the UK unless of course there is a massive crash in the housing market.

The decision making funnel is open…

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