[docmikeParticipant]

Hi all,
I have survived and am 7 weeks post transplant ;bald and not shaved for weeks but energy returning .Probably have bronj in two sockets in lower jaw but onwards and upwards ,bisphosphonate related osteonecrosis of the jaw .
Mike

[docmikeParticipant]

Dear Paul,
I am taking curcumin as I recover from my second asct .
My research lead me to an article on cucurmin absorption;Journal of the american college of nutrition vol34;4 p 347 to 358; Beyond Yellow Curry ;assessing commercial curcumin absorption technologies by BRad J Douglass & D L Cloutare.2015
The conclusion was that the hydrophilic carrier dispersed curcuminoids formulation gave the best absorption which i think is represented by the CurcuWIN trademark(Omniactives.com)
Which is found in Vibrant Health’s Maximized Turmeric 46x (maximum strength 500mg casules ) (also contains black pepper /bioperine to increase absortion) supplied by Water for Health !!!!!but previously by amazon ????.
In the bmj case report (Maggie LAI at myeloma uk was a co author )the dose which effected a five year remission in woman with advanced refractory myeloma was 8gm daily which i assume was the basic powder plus bioperine . I have guessed the dose equivalent as 2 capsules twice daily =2gm daily but it is only a guess because that s all I/we can do at this stage .
As always this issue will be a cause of continuing debate .
Best wishes

[docmikeParticipant]

Dear Herma ,
I know from personal experience Chemo can effect the heart but usually only on a temporary basis (?six weeks?). Protein around the heart is very unlikely to be related to chemo or indeed myeloma but may due to a related condition called amyloidosis . Further information is available on this website but you should get further clarification at the royal free which i think is the national centre for Amyloidosis.
Best wishes Michael

[docmikeParticipant]

Well there you go Nice has approved IRd after 2 treatments via the cancer drugs fund; six months too late for me but ive got my paraprotein down to 2.8 on Rd.
Had 5 teeth out prior to my second asct which is booked for next wednesday 17th .
Mike

[docmikeParticipant]

hi all,
Change of plan ; my response to Rd has plateaued so I am having a further month of treatment but with less steroids prior to my second asct in january .Not exctly what i wanted but there seems less point in adding ixazomib at great expense . I am still very angry about the circumstances which prevented me getting triple therapy for free but action by me to highlight the moral. professional and scientific issues will have to wait until I am recovered from the transplant .
Mike

[docmikeParticipant]

Dear Susie
Not that I am aware of but still investigating .Unless in a trial or in an area where they ignore nice maintenance seems unavailable and the long term cost make this very unlikely despite evidence from a uk trial myeloma X1 . This has to change but how?
Michael

[docmikeParticipant]

Dear Ann, ,Teresa
I would be grateful if you could let me know the location of your hospitals ( Adrian in southampton ?jan t in northern ireland ) where you have received triple therapy ird under the cup scheme.I need to quote this intially to my consultants .
Dear Ann I am also interested in the possibility of your husband been given maintenance therapy outside a trial ?and therefore not licensed by Nice (will Nice ever fund maintenance therapy ???).
Indeed any one else looking at this thread who is on any of the above
I am about to try to pay for 3 months lenalidomide (£15,000?) in order to get three months of ixazomib before my second asct after which there is no option for maintenance.
Mike
Michael G Ashton , MB Chb ,FRCP

[docmikeParticipant]

Hi Yvonne ,
I can understand your concern having had smouldering myeloma myself at presentation in 2008 . I am sure i have written many posts on this in the past (possibly as docmike?).
Very briefly 10% of smoulderers never progress to myeloma and if you go 10 years as a smoulderer you risks drop down to mgus levels which is 2% per year. The mayo clinic in the usa produced the retrospective data on defining high risk,intermediate risk and low risk groups . which has been modified subsequently .Like all of us with myeloma you will become anxious just before your next test which in your case is every three months. Let us hope you are in the 10% .
In the meantime if you M spike starts to rise move to monthly tests and if not a yearly mri of spine is reassuring .
There is trend in trials to commence treatment in high risk groups before full blown myeloma which i would regard as an opportunity to treat myeloma in its early stages (smallest dose of malignant cells?).
Ask any other questions and i will try to help because i have had the same thoughts and worries as you are having now .
Mike /Michael

[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

[docmikeParticipant]

Dear All,
Myeloma uk are aware of the problem of nhs england restricting the FREE access to ixazomib to add to the Rd regime (Named patient programme)by threatening to withdraw funding for the latter regime (alternative go private and pay for it yourself?).Fortunately this potential block has been ignored or got round in some areas as your posts confirm but not in others and according to myeloma uk the problem is not widespread .
The reasons given are that 1)the addition of ixazomib prolongs response to Revlimid (yes that is a good thing clinically !)incurring higher costs for treatment that has not been approved .
This is the first time that longer term financial consequences are used to block a drug . The norm is to ignore the long term savings incurred by more effective regimes ( as proved by widespread publications and uptake everywhere but the uk ….5 years behind??) which prolong symptom free survival and in doing so prevent the costs of side effects ( thalidomide )and early relapse which is always more expensive ( This is an example of preventive medicine which is a very desirable target in medicine but is which as a principal is steadfastly ignored by NIce which obsessed with up front costs alone ).
The other two reasons are related to pharmacists and admin which are nonsense smoke screens to obsecure their real objections ,FINANCIAL.
I am aware the state of the finances in the nhs and the enormous cost of drugs treating myeloma but when a drug company offers free treatment to enable a definitive superior regime you a have to question the competence , the ethics and morality of NHS england when it goes out of its way to prevent patients receiving better treatment ;if a doctor was involved in this decision he has betrayed his professional and ethical responsibilities .
Now off to clinic to see what my latest results are and see if there is anyone locally to reverse decision .
Mike

[docmikeParticipant]

Dear Teresa.
I had my sct in November 2015 relapsed in march this year (not good high risk ??)just finished my fifth course of Rd.and slowly responding -1 every month. I am very pleased your husband is on triple therapy IRd (and which therefore does not include cyclophosphamide or thalidomide )as initial therapy and outside a trial? But beware of NHS England who according to the response by myeloma uk to my situation would not approve such that someone be it pharmacist or commissioner has turned a blind eye to them to your benefit .
Dear Ann
Myeloma uk have replied to my query and are aware of the problem and they are trying to circumvent nhs englands restriction …an excellent response but many battles ahead . I will ask if i can put the response on this forum .
Mike

[docmikeParticipant]

Hi Ann,
I applied for adding ixazomib to rev/dex and was successful under the Compassionate use programme offered by Takeda and was expecting to start tomorrow ;the drug having been in the pharmacy for over a week . I am now told NHS ENGLAND has stepped in with an edict saying they will not fund lenalidomide if I do so .So I assume this is a recent restriction which prevents me going on triple therapy for relapsed myeloma which I know ( not think )is the optimum treatment for this situation and which increasingly is the norm every where else except the uk (due to rationing by Nice and now NHS England .)
I am asking myeloma uk to make enquiries .
Mike

[docmikeParticipant]

Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma and as the heamatologist said ,ad hoc use outside trials is not be discouraged and is indeed very tempting; not least in the relapsed situation (in which Nice has rationed therapy to dual therapy whereas in the US triple therapy has become standard with demonstrable better outcomes). In both instances the first need is to establish a reliable source, dosage and optimum bioavailability conditions . I would be very surprised if it will help every patieint with myeloma as that seems to be generally the case for all anti myeloma treatments at present . Lots more to discuss and discover .
Best wishes Mike

[docmikeParticipant]

Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma and as the heamatologist said ,ad hoc use outside trials is not be discouraged and is indeed very tempting; not least in the relapsed situation (in which Nice has rationed therapy to dual therapy whereas in the US triple therapy has become standard with demonstrable better outcomes). In both instances the first need is to establish a reliable source, dosage and optimum bioavailability conditions . I would be very surprised if it will help every patieint with myeloma as that seems to be generally the case for all anti myeloma treatments at present . Lots more to discuss and discover .
Best wishes Mike

• This reply was modified 7 years, 5 months ago by  docmike.
• This reply was modified 7 years, 5 months ago by  docmike.
• This reply was modified 7 years, 5 months ago by  docmike.

[docmikeParticipant]

I am hoping to go on ixazomib so have no experience but as retired consultant physician( gastro not respiratory ) i do know that asthnma (test peak flow meter ) ?better on dexamethasone day ??? or gastroesophageal reflux (trial of proton pump ihibitors) are two causes of chronic cough relatively easy to exclude .
Mike

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