Dear Susie,
Ive had several mri s .noisy and cramped .SO put on the earphones ,listen to the canned music .CLOSE YOUR EYES and imagine you are on a beach drinking your favorite cocktail and are indeed falling asleep ,focussing on keeping as still as possible(dead lions;the childrens game?????)
Mike

Dear Sara,
I am glad things are looking good from the point of excluding a plasma cell disorder .When i joined a hep c patients group they taught me about the many manifestations/presentations of chronic hcv hint hint!!
You should now be candidate for treatment ;contact the Hep c trust they will know and guide you
Best wishes
Mike

Dear Sara,
Yes, the serum free light chain assay( which is expensive ) is perhaps the best test to exclude MM but it could well be abnormal with chronic hepc but not of a similiar pattern to mm when either the Kappa or lambda chain will be markedly raised but not both (gives an abnormal ratio).(btw I assume you stil are awaiting the availablity…[Read more]

Dear Karen.
On a more postive note ,Ive been to New Zealand twice since diagnosis in 2008 a( my youngest son is a physio out there ) and visited the lord of the rings sites!My travel insurance excluded/s problems from smm which is more risky when ive been skiing om many occasions .Life goes on between the tests!
The risks of developing myeloma…[Read more]

Dear Sara.
I am consultant gastroenterologist (docmike).In 2005 I sustained a needlestick and contracted hepc(genotype 3) and was succesfully treated with pegifn/ribavirin. Retrospectively i did not have mgus at that time because i had some serum samples available to retest . In 2008 I was diagnosed with smouldering myeloma .
Yes…[Read more]

Dear Karen,
One last point, on reviewing your reply ;tingling in the feet and hands (called parathesiae) if persistent (>2 weeks) could be (emphasis on could ) be an indication of a peripheral neuropathy which is not a feature of smouldering myeloma or paraproteins (unless very high with hyperviscosity )so this might be worth mentioning to your…[Read more]

Dear Karen.
By now you will have received a lot of information to answer some of you concerns and clearly you have also been online searching the literature for information.Multiple myeloma is a complex disease and Multiple bit is well deserved because it is a very heterogenous condition such that it is not an exageration to say every patient is…[Read more]

Dear Karen ,
Next instalment!
I also know a lot about heamochromatosis but to be brief ;a blood test to the local genetics lab for a HFE gene status will clarify the issue and I suspect your high iron/ferritin may be related to bordeline anemia?? in which the bone marrow does not utilise the iron as it should(my ferritin(an iron containing…[Read more]

Dear Karen,
Ive had smouldering myeloma for nearly six years and happen to be a consultant gastroenterolgist.But I am not surprised that you are confused about your diagnosis and its management .
When I was diagnosed after a routine blood test I had a skeletal survey and a bone marrow and after the latter was sent to a special centre ,I was…[Read more]

hi molly
The Royal Hallamshire Hospital Sheffield .
Mike

Dear Carol ,
The evidence that delaying sct improves long term survival or pfs is not available and trials are under way which inevitably will a long time ?10years to answer the question
Inevitably if your sct is delayed you will be older and probably acquired some increase in morbidity (bone lesions,neuropathy etc)
Dear Dusk/Fiona It is good…[Read more]

Hi All,
I have watched this post with interest for the last few weeks and I think all of you have made valid points which are not necesarily contradictory . Dusks initial post is about his concern about what drugs are available in the nhs to treat his myeloma, not about the care that the nhs delivers and should be viewed as legitimate universal…[Read more]

hI luciano ,
I hope you went skiing;smouldering myeloma per se should not increase your risk of broken bones unless a dexascan shows osteoporosis or whole body mri confirms bony lesions.I Have being skiing for the past 5yrs with SMM and osteopenia both declared to my travel insurance, with smm not covered and taken advice for a national…[Read more]

hi Julie
My smouldering myeloma was found at (?routine?) blood test for monitoring blood pressure treatment and fasting lipids/blood sugar which also included a liver function test(LFTS).this showed a very high globulin and lead to follow up tests on the same sample (immunoelectrophoresis and immune fixation which are not routine at all !!!).The…[Read more]

hi sarah ,
I am very sorry to hear your news ,altho your back pain in retrospect was unfortunately significant after all.It confirms to me that a MRI of the spine at least should be part of the workup of smm and also performed on annual basis as part of the surveillance programme .Hope tx goes well .Are you having radiotherapy to the spinal…[Read more]

hi mary
Bortezomib .a relative new agent that is likely to become a first line therapy in combination with another drug ( ?lenalidomide ) and it is a back up therapy in the x1 trials (i think?) . Given by intravenous infusion but now can be given by subcutaneous injections , does not cause venous thrombosis unlike thalidomide or lenalidomide…[Read more]

hi mary .
I think that is a step in the right direction but understand your frustration.
mike

hi mary
Have you contacted the doctor in southampton to get his/her opinion ?if not I think it would be a good idea to help sort out the medication he requires .
mike

Dear Eve and Slim,
My son works as a physio in Whangarei,north island; so blood tests(november) willing, that s where we will be in late jan/early feb . We went to New Zealand back in 2010 when he was there before ,altho we did not go to Whangarei and did more in the South Island in our campervan.
mike

Dear Eve
Very good news and much more positive than your last reply to me in july?
Never give up indeed ;to which I would add dare to beleive that a cure/or longer term control is getting nearer (based on my reading of the published research over the last 4 years ;more treatments available and more in the pipeline ;availablity and access may be…[Read more]