Hi Dai
Agsin you rsise a very important point and one which is very worth our debating – and maybe an article in "Myeloma News". I read an interesting post this morning from Pat – Myeloma Beacon blog, where he poses the first part of a discussion on individualised treatment plans, something very dear to my heart.
You are so right though when you point out that we don't know, as the patients, what kind of MM we are dealing with and have to get our blood results by waving the Myeloma Diary under the Consultant's nose each visit.
From all I have read, I am sure there are some patients for whom less tratment, rather than more at the beginning, is better. I have decided to take that risk for myself. I did manage to have a part discussion about this with my Consultant this last visit. I asked if we could set a ceilling for my PP before we would consider treatment, so that I don't feel I have to go into battle each visit. She, no doubt rightly, said it was trend rather than numbers that were important, but apart from agreeing to go onto Zometa instead of Bonefos tablets (and I was surprised I hadn't been asked about this before) I feel a bit easier in my own mind – and got a three month interval before my next appointment instead of the usual two!
One of the things Pat says in the Blog (sorry I am no good at giving URLs) was that given the pleriferation of new treatments, it means only those Consultants at the very cutting edge can be in the forefront in decision making.
Dai, I would be very worried if there were any real truth in the case you make, that if a patient doesn't follow a set path it would lead to difficulties later. Certainly something we ought to be challenging – How??
You also, personally, are one of the people I think of, when i wonder if SCT is always the very best option. Is the pain always worth the gain? I guess it does come back to personal prognosis, something which we don't seem hot on. But then we read of folk, like Jude, who were high risk, and even in spite of a failed SCT, are still here to tell the tale so does prognosis always help.
I'm sure we are all grateful for advances in treatment, but how can we make the very best use of those advances. It's why I'm very grateful for those willing to go on Trials – I'd be up for a Trial on "less is more" in all senses. When I read of what people die of with MM, not to put too fine a point on it, it is usually from failure of other organs or infections so it seems to me that we should put in as much effort in preventing this organ damage and these infections. I'm not totally convinced that high doses of chemo are the only way. Perhaps they'll write that on my tombstone!!!
Let's hope we can all be here many years down the line to compare notes again, but in the meantime, I'm with Dai, lets see if we can get some logic (understandable by the lay person – i.e. the patient!) into the treatment of this horrible disease.
Sorry to have rambled on so long, but before I finish, just to say to Eve that I agree that Slim should be getting some better treatment.
It is a shame we don't have the big patient/Consutant Conferences that they do in USA, where these questions could be put. Maybe that is what you have got into, Dai? All power to your elbow, as they say.
Greetings to all my friends on this great site.
Mavis x
