dear angelina,
Iv seen one criteria for smouldering in which one lytic lesion is “allowed” ;but 2 lesions=active mm
Within an mri there are 2 techniques( T1 and T2) that can be used such that the mri for ms shows the nervous tissue best but NOT the bones ;the alternative method is best in detecting myeloma of the spine (whole body mri is not…[Read more]

Thank you very much; It should prevent repetition in giving inmformation to new smoulderers as all the relevant details will be on the one forum /thread
Mike

Dear Karen,
I may have misunderstod your consultants views or your interpratation but having monitored the internet for the past 6 years on myeloma I have to disagree; reality (in the uk at least ) is way behind the information about progress in myeloma available on the internet.If I needed treatment soon there is fifty percent chance it would…[Read more]

Hi all ,
Ive just been stateside(internetwise) on the myeloma beacon and Dr Rajkumar (mayo clinic , number 1 myeloma expert in the world in my opinion)states that the above criteria apply ONLY to patients at initial presentation .So if you have had smouldering myeloma for over two years these criteria may not apply .Which is as I expected;…[Read more]

Dear Chrissie,
Yes your cells will mutate but the next dominant clone that takes over may not be as clinically agrressive /significant presumably by suprressing the bad clones .We are all here because of mutations millions of years ago .
Mike

DEAR MARTIN ,
This is the thread which may resolve your concern about about 80% risk which has now become 90% risk according to the experts who indeed have access to the best retrospective patient data to make that guideline

Dear Smoulderers .

We all have two contrasting thoughts.Fistly we hope we will smoulder forever and never require…[Read more]

DEAR MARTIN ,
This is the thread which may resolve your concern about about 80% risk which has now become 90% risk according to the experts who indeed have access to the best retospective patient data to make that guideline

Dear Smoulderers .

We all have two contrasting thoughts.Fistly we hope we will smoulder forever and never require…[Read more]

Dear Chrissie,
Like Helen ,your question highlights the complexity of myeloma and the gaps in our knowledge in predicting the outcome in smoulderers(SMM)
The largest study on SMM was published in 2007 and this is still regarded as a sentinel reference and was published on both sides of the atlantic . The retrospective study was conducted at…[Read more]

Dear Chrissie,
Like Helen ,your question highlights the complexity of myeloma and the gaps in our knowledge in predicting the outcome im smoulderers(SMM)
The largest study on SMM was published in 2007 and this is still regarded as a sentinel reference and was published on both sides of the atlantic . The retrospective study was conducted at…[Read more]

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…[Read more]

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 citeria 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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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