Good news;my paraprotein has gone down from 44 to 19 after four weeks of ctd.
Muscle tremors ,tetany on some days due to low calcium /zometa only side effects so far .
Mike

Hi all.
Ive just commenced my second three week cycle of ctd.So far I only know my hb has risen from 110/11.1 to 122/12.2 after two weeks of tx which I regard as a good sign.
Great news Dawn your heading for an excellent response to tx
Yvonne , I am pleased bloods are stable.But note some heamotologists regard recurrent serious infections( eg…[Read more]

Dear Yvonne,
A negative Pet scan may give you reassurance.
mike

Welcome ALI
I am about write retrospective review on my experience of smouldering for 6 and half years which answer some of you queries
Mike

Hi Marian,
Welcome to the smoulderers/mgus forum which was set up relatively recently because there was a need to address the specific problems we encounter.
Your queries are not new so I will try to answer them .
Light chains ;
In your bone marrow you have an excess of abnormal plasma cells which produce abnormal immunoglobulins /paraprotein/M…[Read more]

Dear Carol,
Thank you.I am aware about the neuropathy of thalidomide,I hope yours is resolving .
Mike

Hi all,
HB dropped to 11.1 before zometa infusion(flu like reaction 36hrs after)
Enrolled for myeloma x1but on CTD
Start 22/4
Mike

Dear Jane
My light chains are rising but below 100 and ratio below 50
Mike

Dear Sean.
Smouldering myeloma has it s own thread
If you hb is less than 10 or has dropped by 2gm since november you have the criteria for active mm.In the uk you would most likely be offerd to go myeloma x1…[Read more]

Dear All,
A temporary repreive for two or three months unless hb drops to 11.1(last up to 11.7).The pet scan showed a pea size lesion in t12 ?significance ;repeat scan in may . But start zometa meanwhile .The 60% plasma cells are criteria for treatment but not for enroling for myeloma X1 which would give possible access (33% chance ) to…[Read more]

http://myeloma.org/ArticlePage.action?articleId=4359
there you have it !!Mike

Dear Jane and Chrissie .Thank you for you support.
davefletchers thread on yvonnes topic is worth a look .
Mike

Dear Dave
Thank you very very much for your imformation.I have had a negative mri but positive pet scan which I can now regard as a genuine first myeloma bone lesion and not a false positive .There are few references in the literature comparing mri and pet scan in myeloma (usually comparisons with skeletal xray survey .There are proposals to…[Read more]

Woops bone marrow 60% plasma cells !! pet scan uptake on T11 (thoracic spine ) not seen on mri , hb down again to 11.5/115 (11.1/111 = 2gm /20dm drop =anemia =active myeloma )
on the edge of the cliff
appointment on thursday to discuss options
Mike

Hi kath,
ERRor BMB plasma cells 1% (?0.77%) not 77%
Just read you r other thread on newcomers !!
Apologies Mike

Hi Karen,
Sorry to hear your news but you seem to have accepted your fate and indeed got on a good regime(?outside a trial ?).
I am just about to have BMB today and pet scan tommorrow ;so I think I am not far from treatment.
pProtein 38 hb 11.9
see smouldering forum
Regards Mike

Hi Kath and Yvonne
Just to confirm the papaprotein levels can fluctuate a bit by one or two each visit ;but a sequential rise at each vist is more significant and this best assessed by more frequent and shorter interval testing (4 or2 weeks).
I know this from personal experiance over the last 10 months and am having a bm today and pet scan…[Read more]

Hi Dawn.
I am still in limbo; M spike leveled off at 37. hb 11.9 but mri spine and limited skeletal survey no lytic lesions .Am awaiting bone marrow on 23/2 and pet scan 24/2
The skeletal survey in sheffield did not include long bones which is contrary to the guidelines of 2011 British Haemotology society.The pet scan broke yesterday and hence…[Read more]

Thanks for yor best wishes .I am awaiting a mri : my alk phos has fallen being compatible with a recent silent micro fracture somewhere.
Dear Chrissie . The stats shows that 10% of high risk smoulderers patients Do NOT progress within ten years and are then regarded has having MGUS with a risk of 2% per year .
I have not found any details of…[Read more]