Hi – this is Eva. I've been thinking about a very important question. Has anyone in the UK had an analysis of their bone marrow and been told of the genetic status of their myeloma?
Apparently as the illness progresses and one is exposed to more meds, more genetic abnormalities are likely to appear. These are known – they can be named and classified but there are many of them. The kind of abnormalities we have seem to determine to some extent whether we have a very aggressive illness( called 'high risk myeloma' in some literature), or a less aggressive one which is sometimes called 'low risk myeloma.' At first these distinctions seem useless, as surely what matters is whether we respond to various drugs and how we can cope with the side effects and for how long…..
However, many myeloma experts overseas employ these distinctions and even use them to try to figure out which meds will be more likely to work for which patients. For example, it might be possible to predict that for some kind of aberrations, Thalidomide is unlikely to work, or could even make the situation worse. For others, especially if someone is suspected of high risk myeloma, having Velcade early on seems to be a good idea as it might cancel out some of the handicaps that such patients have. There are papers on such issues – this is not really new stuff but has been discussed in the past at myeloma conferences. I have read one paper from the UK, don't have the reference here, sorry, but it was headed by Gareth Morgan. The patients in the trial seemed to be classified according to their gene profiles, so I know that this technology exists in this country.
Anyway, I'm wondering, has anyone been told anything about their gene profile? And if so, any implications for treatment? Perhaps in the UK this process has to be consistently available, and since it isn't( it must be costly), it is not a part of accepted practice.
Another issue that I think about a lot is whether in the UK it's inevitable that we pass through the treatments in straight line trajectory, sequentially and often one by one, or in recognised combinations? To what extent is deviation possible? For example, for most patients, do you get Velcade at first relapse and until it no longer works? Or is it possible to mix and match treatments, perhaps in smaller doses, in the hope that these meds will work synergistically and delay the myeloma clone from becoming resistant to one particular drug? Is the process driven by funding or bureaucracy or flowcharts? I know that if someone has a disastrous response to a particular drug, they can usually skip to the next one. But is that the only reason for not following the 'guidelines'? There are some schools of thought that even if a drug no longer works for a patient, recombining it with a new drug might make the new drug much more efficacious. And some patients overseas seem to have the same drug a number of times, relapse after being off it for a while, and then it works again. This requires a certain mindset on the part of the oncologist. There are conferences overseas which UK specialists undoubtedly attend. One of the topics looked at is what happens when we recombine treatments in different ways and when we add a new meds to the mix. If this were to happen here would the NHS be able to cope with the complexity of funding?
I'd love to know whether other patients have experienced such flexibility, especially earlier on in the course of the illness.
My observation is that the treatment of Myeloma is a science in which many things are happening as new meds are approved, but perhaps it is also needs to become an art.
Eva
Eva 11 years, 11 months ago.