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 powerful resource and there is such a thing as making yourself an expert on your own condition and giving support to others .This is an important thread as secondary mugus occurs in about 6% especially after asct and is associated with a better outcome . I quote two references for those who want more details; R Wadhera et al (Mayo clinic of course)Blood 2011;118(11):2985-2987. Zou et al Biol blood marrow Transplant 20 (2014)319-325 .
Had you not done you research you would have been on repeat chemo!
I am trying to get my head round being mrd -ve and having a polyclonal gammopathy .
Best wishes
Mike
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 myeloma are on average 1-2% per year and 2% of 60 years old have mgus the majority of whom are unaware because it generally does not show on routine tests. I hope that puts thing in perspective .
hi Ted , If you have had smouldering myeloma for over ten years you risks are now that of mgus 2 % per year according to the only long term study of smoulderers in the mayo clinic usa good news indeed.
hi Julie
Without wishing to alarm you I think you husband has moved from mgus to smouldering myeloma with that rise in paraprotein (unless he has a repeat bone marrow recently ) if it goes over 30 he is at high risk.
you can see my past posts on smouldering myeloma on this forum or ask for further info
Mike
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) http://www.myelomabeacon.com/pr/2017/01/05/janssen-bristol-myers-squibb-darzalex-opdivo-collaboration/
Your husband faces the benefit/risk question with a step into the dark as regards what to do in the smouldering scernario.But i think the move for earlier treatment in smouldering is now gathering pace but this was not the case 8 years ago when i started reviewing the literature and had the same questions you have now.This a trial to answer a question for which the answer is unknown and will remain so for a few years but the range of effective treatments now available (even despite the rationing of Nice )make it a realistic proposition.I do realise however it is a dificult decision because no one can tell you if it leads to the best outcome.
Best Wishes Mike
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 tx I would have gone for this if had it been available 3 yearsago .
Best WISHES
Mike
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
hi mark ,
I went skiing for about 6 years whist smouldering but had mris and dexascans and the opinion of osteoporosis expert to confirm my risks were minimal and my insurance excluded myeloma . I also played tennis until my myeloma kicked off when i stopped but continue to play golf which surprisingly is seen as an impact sport ??? As far as i know i have no bone lesions (pet scan ) but had lots of steroids and zometa to counter balance them . Providing i stay in remission i will repeat scans and then reassess risk of tennis and skiing and travel insurance costs. Hopefully you will smoulder for ever but regular scans despite what Nice recommmends are reassuring .
and in my opinion esssential in any case as silent bone lesions seem to be detected in studies of patients thought to have smouldering myeloma and 2 lesion equals active myeloma and the need for treatment.YES there are risks ;it is quantifying them and then making decisions accordingly .
mike
Skin complications
on day 44 I developed what was thought to be drug rash but this did not respond to antihistamine or hydro cortisone cream or indeed 4 other types of lotion. The rash was very red and the skin was swollen with very bad itching at night and shivering like sunburn reaction .It eventually settled on a second course of steroids, prednisolone 30 mg for 5days 20mg for 5days and 10mg for 5days.
My haematologist thought this could be auto agrressive syndrome \(controversial concept apparently) equivalent to graft versus host GVH even though the stems cell s were my own (autologouS)
and not someone elses (allogenic).It has now settled as it apparently usually does but it was an unpleasant six weeks
mike
Hi Karen.
My bone marrow showed 7% plasma cells in the trephine (5% in aspirate) compatible w ith residual myeloma /partial response but I am on double blind trial of maintenance therapy with 60% chance of receiving izaxomib. My mprotein fell to 9 before the trial suggesting some ongoing delayed effect from asct .
Low blood pressure could well be due to cardiac effects as i had to reduce my blood pressure tabs before the onset of svt
hi David
I am about to describe the skin complications which in my case was not fungal .As regards the cardiac side effects ,I agree very gradual increasing exercise over the months and avoid severe exertion.
Mike
reference European Journal of Heamatology vol 89 ppp 228-235 JS Bleeker et al
Hi Rebecca,
I am about to describe my heart complications on the side effects thread but if your resting pulse is 50 it suggests your are very fit (do you run marathons perhaps??) and that there is no heart damage . I cant get me pulse below 80 yet altho things are improving and I have no cardiac symptoms but just feel unfit which is perhaps normal 100 days post asct .I would be interested in your reference about more heart complications after second asct?.An echocardiogram before the second asct (which hopefully youll never need ) seems the reassuring solution.
Best wishes Mike
Dear All,
day 98 post asct
I am starting to feel better despite my first persistent cold but it has not been plain sailing but I will discuss this elsewhere on separate threads on side effects (skin and heart complications).
I have still only achieved a partial response ,albeit the sequential samples post asct have shown a fall in the m protein down to 9 so hoping the decrease will continue. But I have been accepted on maintenance trial with ixazomib (oralPI)(double blind with 60% chance of receiving active drug ) so i hope this increases my chances of further clearance or longer remission
So my further progress will not be on the smouldering thread .
However I will add contribution to this thread when appropriate as now with the new nice guidelines see above .
Mike
Thanks Karen and Dawn and I hope all is going well with you both .I go in for my ASCT next Monday 2/11
Mike
After five cycles of vcd my M protein having dropped to lowest ever of 14 rose again to 16 .So I have to accept that I have partial response only after both thalidomide and bortezomib and am now proceeding to ASCT asap.
Mike
After 2 injections of velcade M protein fell from 19 to 17 so hopefuly thing are going in the right direction again,slowly as anticopated with velcade ?
Mike
Dear Dawn,
I am pleased you are doing well and hope all goes well in the future .Do you visit O2 day ward ? I visit mondays and thursdays for my velcade 2 weeks out of three (VCD off trial ) . CTD was stopped working halfway (at PR just ) after 4 cycles .I was offered to come off trial and get VCD for certain which I chose.
I am better off thalidomide ;no tremors and better on steroid withdrawal days (but now on less steroids but these help write late night emails off thalidomide!!!) I am just finishing second three week cycle but no results so far as response is much slower apparently. So asct may be november or later I guess.
I am impressed with the sheffield set up so that should reassure you.
Best wishes Mike
