[docmikeParticipant]

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 treatment as you but it has been in sequence and with cyclophosphamide
I note that RCCD was reported to have given 41% serious adverse reactions in the first report on it from Myeloma X1 in EHA but that was considered the norm compared with reuslt with quadrupee regimes !
Dear Ali
I hope that definite answer is confirmed soon for you ;the classification of lymphomas is legendary to most non heamotologists ,so I don.t know how signficant the alternative diagnosis but hope all goes well.
Mike

[docmikeParticipant]

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 for me with lethargy and inertia days 2 and 3 after stopping them.
Next blood test is slightly critical to say the least.
MIKE

[docmikeParticipant]

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 which is apparently a common” red herring ” as i was warned about this possibilty when I had mri pet scans and xrays when my M spike went up to 40 . This was just before I became anemic enough to be regarded as having one of the CRAB features which enabled me to enter the trial myeloma X1 in the uk which gives you a chance of getting the better treatments . I would think this type of issue may apply in OZ.
However others have rightly suggested looking for non myeloma cause bearing in mind the sensitvity of a pet scan which causes lots of false positives ,such that a negative pet scan is as good as it gets and to some extent very reassuring ( colonic polyps are symptom free).
However a referal to a unit with expertise in myeloma in one of your larger cities (Sydney the obvious choice perhaps) may bring you into contact with someone who has seen lot of smoulderers and may have seen a patient with a similar problem to yours in the past, or who also would look for alterative explantions unrelated to myeloma .Have been a clinician myself , I have to tell you that not every pain is explicable despite extensive testing and indeed intensive thinking and that is a better explantion than being told there is nothing wrong with you.
Your protein being over 30 puts you at a higher risk but nothing is 100% certain in smouldering myeloma.But continue to search for answer before considering physio etc .
Hope this is helpful bearing in mind that there somethings you do not particularly want to hear
An active arthritis would be expected show on a pet scan but osteoarthitis would not. Anti inflammatories /nsaids can cause problems for the kidneys in myeloma if not elsewhere .
best wishes
Mike

[docmikeParticipant]

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 ,possibly September in Sheffield where I am being treated . So we might be in the isolation unit together !!!!I have every confidence in the unit there. It now has an international reputation as one of two centres (other chicago) which has done a pilot trial of SCT in severe relapsing multiple sclerosis .
I not sure if they will insist on specific number of cycles(in the absence of increasing side effects) and how long the cyclophosphamide , stem harvest cell takes assuming it goes to plan ,so October may be the outcome, again subject to availablity of slots in the unit ????
My worse days appear to be on the two three days coming off the steroids . Inertia and my tremor gets worse and seem to pass more urine .I also have had tetany in my thumbs but I think that is due to Zometa causing hyypcalceamia +low albumin and haemodilution effects , so having to take calcium tablets .But no sign of peripheral neurpathy so far .On steroid today hence I am up late
write this message !!
Best wishes Mike

[docmikeParticipant]

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

[docmikeParticipant]

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 pneumonia ) as an indication for treatment.
I am still working on my reflections thread .
best wishes Mike
ps smouldering myeloma =asymptomatic myeloma

[docmikeParticipant]

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

[docmikeParticipant]

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

[docmikeParticipant]

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 spike ( normal immunoglobulins form antibodies )
Each immunoglobulin is made of 2 heavy chains (of protein) and 2 light chains in a Y configuration.
In myeloma the paraprotein production /breakdown often leads to an excess of one type of light chain .either K =kappa or L lambda chains being formed. Indeed some myelomas produce only light chains and no intact paraprotein
The free light chain assay(££££) measures the amount of two light chains in the blood . In myeloma the affected light chain exceeds the unaffected light chain to give a increasing ratio ( K>L or L>K
It has recently been confirmed that a ratio of 100 gives a 80 %+ chance that active myeloma will evolve in the next two years and is indication for starting treatment under those circumstances.
So measuring light chains has become a supplementary test for assessing smm.
the increasing ratio may predict a rise in the paraprotein . ( it also goes back to normal after successful treatment ) ;an expensive test which is of the menu in some centres
That enough info at one go !
Mike

[docmikeParticipant]

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

[docmikeParticipant]

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

[docmikeParticipant]

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

[docmikeParticipant]

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 trial
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/clinical-trials-and-novel-treatments/myeloma-xi-infoguide
definiton of chemotherapy ?? in parts yes but not as severe as some but read other threads on this site who will disagree.every body is different
Mike

[docmikeParticipant]

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 quadruple therapy (CcRd version 6 ).
Dear Dawn , my protein is 46 so you’ve a bit to go yet but over 30 may signal the need for the tests which I ve just had .
Mike

[docmikeParticipant]

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

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