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…[Read more]

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)…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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,…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Thank you all.
I feel better off the thalidomide ( tremor better ,symptom which is only of interest to a gastroenterologist seems to be changing direction, .inertia gone )
but steroids now keep me awake and very hungry, hence the time of this email and more. I hope the stem collection goes well KP .
In retrospect I am now on the same…[Read more]

Well things turned out differently.My next two results showed a plateau response due to thalidomide stopping working. So after four cycles I was given the option of coming off the trial and going on VCD for certain ,which was my wish .
So day 1 today Velcade/cycl/dex
So off thalidomide and heparin but still on steroids which cause most problems…[Read more]

Dear Tm.
I understand your dilemma and there are lots of grey zones in our understanding of smouldering myeloma .But you a have had all the tests available which could detect myeloma bone disease assuming the neck problems are cervical spondylosis related ( which btw i have also) . The pet scan is very sensitive hence the colonic polyp detection…[Read more]

Hi Dawn,
You seem to be heading for a complete response but sorry about the chest infection.
I will find out on thursday my results from three weeks ago which was near the end of second cyle but only a week after last result of 19 so hoping for lower double figutre or less.Like you if thats the case, I will to try to gat a provisional date for Sct…[Read more]