[docmikeParticipant]

Dear Anne ,
Thank you for your update it highlights the need for a reliable source with good bioavialability ;after that pharmacogenetics , pharmacokinetics and pharmacodynamic studies in patients together with the genetics of an individuals myeloma will help reach the goal of personal tailored therapy ( yes that is a long term process but thats the direction you have to aim for because it seems likely that curcumin will not work for everyone as already been shown. Eventually you need to identify those who will respond to the ideal dose and formulation, those who wont and those who will get bad side effects .Thalidomide has not passed all of these tests and pharmacogenetics might well predict those who are most likely to get serious side effects equally as those who will have an excellent response ( prediction 10% or less) and they may well be overlap between the two groups !
I knew a lot about milk thistle a few year s ago as it passed a lot of the above tests and reached the stage of a tried prototype for treatment on hepatitis c. if you want a model of how an alternative medicine got to be a credible therapeutic agent then milk thistle is a good one . Pharmacogenetics had a world first a few years ago when it was able predict which patients with hep c would respond to peg interferon and ribavirin according to the possession of the two separate gene products which favoured ideal pharmacokinetics and pharmocodynamics for each drug . Sadly as with milk thistle there are now better drugs with less side effects available (incidently initially appproved by nice but blocked by NHS england ) so these studies which equally in general terms are applicable to other areas are out of the limelight .
In 2005 I had my first needlestick injury and contracted Hepatitis c ( 3% chance) struggled with the above therapy pegifn /riba joined two hep c forums but thats a long story which i leave for another time .( But sera stored at the time showed retrospectively I did not have silent MGUS but by 2008 I had smouldering myeloma another long story ). Suffice is to say I learnt a lot from the patient experts not least about assessing the claims of cures for hep c from alternative medicine . They were ruthlessly quick in demolishing posts from the snake oil salesman within minutes because they had worked out you have to have scientific principles applied .
Enough ;can you guess friday is my steroid day !!!!!
mike

[annkhowardParticipant]

Thanks for your response, Mike.  Sorry to hear about the hep c, something I’m ill-informed about.  I’ll read your post more carefully later on, as I’m just off to Bart’s for my regular pre-clinic blood tests. Not optimistic about results this month as I’m still recovering from chest infection/antibiotics, but expect to be back on track shortly and will report back again. Yes, there is definitely a whiff of steroids in your answer…

All the best, Ann

[annkhowardParticipant]

Hi all: October update on progress:

Improvement continues and my digestion sorted, I’m now back on 1 Thisylin a day; FLCs are down again and my kidney function is best yet.  My wellbeing is still being helped by the women’s cancer support group at a local hospice, and I’m also getting a great boost from physiotherapy.  The only down side is that my spine is slowly collapsing and bone treatment appears to be off the menu for fear of damage to kidneys – I’ll be asking about this at next clinic. I’ll try to update again in November. (Clinic dates are getting further apart as long as I continue to improve).

[Author]

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