[docmikeParticipant]

hi helen
I think your posts explaining why you have smouldering mm and not mgus illustrates the complexity of myeloma and why there is understandble confusion in establishing the criteria of each diagnosis ‘modern technology (flow cytometry) however is starting to fill in the gaps in the knowledge of the above .Unfortunately the complexity makes it difficult?impossible to explain in one outpatient visit.But clearly you had bad experience which left you with a negative impression rather than that not all smoulderers progress(sometimes despite adverse criteria) and after 10 years the risk falls to mgus risks .better treatments, longer survival .young patients do better and I beleive a cure is on the horizon (and I v been loking at the medical literature on MM for 6 years )
I hope you continue to smoulder forever .
Mike

• This reply was modified 9 years, 11 months ago by  docmike.

[docmikeParticipant]

I think Alice reflects what is likely to happen in the short term but if you have any of those criteria you may wish to have more regular checks which might include an mri or other imaging tests.
There is a trial on going; assessing lenolidamide by itself in the above situation(in the US needless to say,) the outcome of which is again likely to be critical in moving this issue forward although whether Nice will approve lenolidamide as frontline therapy in the uk ???
Mike

[docmikeParticipant]

hi anthony
Free light chain assays are expensive but are superior to urine bence jones analysis and have a potential role in assesssing “whats going on “at all stages and types of myeloma . A superior complete response(sCR) to treatment includes a normal fee light chain result/ratio.
Resistance i suspect comes from lab and clinicians have to fight their corner .
Best wishes Mike

[docmikeParticipant]

Hi Brian,
I,ve been smouldering for 6 years but am awaiting my recent bloods results which may change my status. Bisphosphonates have been mentioned as the next step even if i have not progressed.
Kp s thread on a confusing journey is well worth looking up .Martin has had a pet scan which I suspect is the best test to reassure you are a smoulderer if it is negative .But it is expensive and rationed accordingly by the radiologists( just as they did when ct scans and mri s entered the clinical arena; I happen to know this because I am doctor) .
The dilemma of SMM is accurately predicting those who will progress with a 100% accuracy before damage is done because treatment( at the moment) is not without side effects .Hopefully you are stable and you will get used to the regular blood tests in between which life can can go on as normal once you have answered all your questions at this initial stage . In that respect the contrary advice may be to visit this forum infrequently .
Mike ( was on the forum as docmike previously )

[docmikeParticipant]

Dear Susie
I think myeloma x1 has zometa/zolendric acid iv/bisphosphonate within its protocol .You may wish to look on this website about the treatment of plasmacytoma and in the relevant discussion forum .
Dear Karen ,Likewise i suspected that you have entered the grey zone(sm or mm?) like me . your title confusing journey thread reflects the gaps in our knowledge in this grey zone .
Mike

[docmikeParticipant]

Hi Susie,
I am sorry to hear your news but I am not surprised after reading your posts on kp’s thread ;(?NEW)vertebral fracture amd m spike>30 is highly suggestive of mm.not mgus or smoldering .I also should confirm that physios may order mri s but a radiologist is professionally responsible for the primary reporting of the mri and generates the written or electronic report without exception .
As it happens my m spike is now 30 so the next blood test in october may be critical .My heamotologist has already mentioned prophylactic iv bisphosphonates .So i may join you on treatment very shortly after 6 yrs of smouldering (and reviewing all the literature on smouldering on the way ).
Best wishes mike

[docmikeParticipant]

Dear Steve.
Im afraid there is not a lot to go on, to give you advice.The ultrasound is probably to scan the kidneys to see if there is anything to explain reduced kidney function(small kidneys or large kidneys) .
Leg pain may or may not be relevant .
More tests for more information …and then appropraite hospital referral?
Mike

• This reply was modified 10 years, 3 months ago by  docmike.
• This reply was modified 10 years, 3 months ago by  docmike.
• This reply was modified 10 years, 3 months ago by  docmike.

[docmikeParticipant]

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

[docmikeParticipant]

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

[docmikeParticipant]

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 of a non pegifn /oral regime to clear your hep c?? )
Mike(michaelgashton@aol.com)

[docmikeParticipant]

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 starts to decrease after 5 years and you are regarded has having mgus after 10 years (3% chance per year).
Mike

[docmikeParticipant]

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 cryoglobulinaemmia could explain your symptoms apart from rib pain . I hope you have neither because then you need to get rid of hepc whatever and i know where to get you support from fellow heppers ( do you know chrissy davey/pixie). You are not alone .
Mike

[docmikeParticipant]

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 gp if it continues to be troublesome . Apology for potentially alarming you .
Mike

[docmikeParticipant]

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 different. And so it is with smouldering or asymptomatic myeloma in which the current research focuses on trying to find the clinical criteria which identifies those patients with the highest risk of progression in whom treatment might be anticipated to give the maximum benefit before bone damage .There has been a trial in Spain which has suggested that this is possible but all treatment has side effects and at least 15% of patients would not have required treatment.All the criteria used include some data from the bone marrow which thus can be regarded essential in trying to determine where you are in this disease.Imaging is also at last been appreciated as important .Measuring serum light chains is much more expensive than testing for urine Bance jones protein (light chains that past thro the kidney from the blood) but probably is more sensitive than the M spike in showing progression earlier ( NB some pateints do no secrete am M spike but light chains are always detectable ).Enough information in one bite!
Mike

• This reply was modified 10 years, 5 months ago by  docmike.

[docmikeParticipant]

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 protein) was also raised .
No relation ,that i know, of the two conditions, myeloma and heamochromatosis .
More to information to come tomarrow to address your other concerns
Mike

• This reply was modified 10 years, 5 months ago by  docmike.

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