[docmikeParticipant]

As promised some time ago I think I should share my thoughts on smouldering ?asymptomatic myeloma having watched the literature for over 6 years .The bullet points are ;
There needs to be a UK database for all patients with Mgus and Smouldering myeloma;genetic studies from uk patients at diagnosis and onset of active myeloma should help identify which gene (s) switch on activity bearing in mind the genetic complexity of smouldering myeloma differs very little from active myeloma . In the much longer term it should identify the genes associated with the 10% of smoulderers who never progress .Both these processes could lead to the development of more targetted therapy .
There is a need for free light chains to be universally used in monitoring on a regular basis .
Whole body imaging not just the vertebral column is also desirable annually but which technique is or will be available in uk ?(wbmri,pet scan or low dose multidetctor ct ???)
At the onset of treatment for active myeloma an ex smoulderer should have the least damage and the smaller tumour burden but there is no data on the outcome of smolderers as far as I am aware .
Only one study has shown benefit for lenalidomide in high risk smoulderers but more trials are required on this therapy as well as others so opportunities for entering such trials should increase .
I do appreciate that more tests and waiting for the results engender anxiety but this has to be counter balanced by the anxiety of not wanting to miss the time when treatment is inevitable and before damage is done .
In my own case the rise of the mspike over 30 over a period of months was significant and the eventual repeat bone marrow(yes I know that is the test nobody wants to repeat !) showed 60% plasma cells ,even though I had to wait til the hb dropped 2gm to enter myeloma X1 studdy which gives possible access to the better treatments. And as you see elsewhere my response to treatment has not
been spectacular .
I hope this helps
Mike

[HarmonyParticipant]

I think targetted therapy in which each individual case of myeloma is looked at so that patients receive a personally-tailored approach has got to be the answer. It’s logical that if myeloma is such an individual disease, generic treatment will have it’s limitations. The American approach seems to be to look far more closely at the individual case but I suspect cost implications stop this approach from being adopted in the U.K. On a slightly separate note, I went for a run with my 12 year old and forced myself to keep up with her,without warming up a week ago, and felt an immediate pain in my hip. Stupid- I know. I’m now wondering if the ache is still a result of this or has the myeloma become active? This is the ongoing torture of smouldering.

[cygnetParticipant]

Hi Mike

Thanks for sharing your wise thoughts & reflections.

For me, what strikes me as I read the various posts is how varied the approach to MGUS/ smouldering/active myeloma is & this postcode lottery effect worries me. Even the NICE guidelines seem vague – for example in  my area (East Kent) they don’t measure free light chains I’ve been told. I only found out because I saw a registrar who requested them for risk stratification but when I saw my  usual  (general)haematologist she said the health authority “didn’t use them.” Hmm….. I guess we have to stay aware & proactive – certainly I’ll be exercising my right to a second opinion from one of the London based myeloma specialists if & when the need arises.

Please keep us updated on your treatment progress –  my fingers etc are crossed for you.

C xx

[docmikeParticipant]

post script
I have recently had chance to review my results over the years preceding active mm and now note that there was a slow rise in the free kappa light chain about 18 months before the m spike started to rise .This has been reported before in mayo clinic usa retospective study on mgus and smm.
I am in remission nearly a year post sct. m spike between 6 and 9 ,on double blind maintenance trial of placebo(me) versus ixazomib. Incidentally i have bloods measured in two labs and they are significantly different ;so trends are much more important than absolute values especially with free light chains . best wishes Mike

[cygnetParticipant]

Hi Mike

Great to hear from you and thank you so much for this information.

I wish you a long and happy remission!

Best wishes

C x

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