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]

Hi

Just wanted to say it isn’t the end if you aren’t able to have a SCT. It is nearly 7 years since I was diagnosed. I had CDT and the went into resession. My paraprotein is now gradually rising, but it is good for me to know there are so many new drugs on the market now. Options are improving all the time.
I have a monthly Zometa infusion for…[Read more]

I just signed into page after a very long time. I think, like others, sometimes it just seems important to keep your head down and just keep plodding on! However, I do often wonder how you all are as after all we are the old staters now.

Ian’s strap line about “using every day” is written at the top of my diary.

Helen and Andy, I do hope the…[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]

Sounds great Adrian….every bit we can all do is really great.
Hope the SCT goes well for you – Take it easy afterwards, listen to your body and don’t overdo it! Fundraising can all wait 🙂

Deb x

Hi Rachel
If your next 2 tests(?over the next 3 months) still show a paraprotein of 3 (+/-3 the test results do fluctuate im afraid)you most likely have mgus but by that time you should have seen a haematologist who will have arranged the appropriate tests (//bone marrow and skeletal survey )to confirm this .The risks of mgus turning into…[Read more]

This general reference explains about daratumumab (which has until recently been used in relapsing/refactory patients who tend to have poorer response rates and tend to have more aggresive disease becuase of previuous multiple treatments and the passage of time)…[Read more]

Hi Jane,
This is exciting and thankful news for smoulderers ,relapsers and potential relapsers .I stand corrected but this seem a very recent development so experience uk wise must be limited.But it is not a chemotherapy type agent but an antibody such that allergic reactions are possible.
Having had smouldering myeloma before going onto standard…[Read more]