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

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…[Read more]

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…[Read more]

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

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

Dear Sue ,
Congratulations on your brilliant detective work which required both endeavour and courage . As a doctor who has had myeloma 8 years and who therefore has searched the literature I admit i d not come across secondaru mgus . Thank you .
However it confirms my view that I have held for 12 years(long story )that patients forums are a very…[Read more]