[beverleyParticipant]

Hello Anne
You will need time to get used to this I had 2 weeks off work sick as thing were getting too much and I needed some time for me. My mum had died in March from breast cancer, I had my cat put to sleep in June and I was diagnosed in August (not a good year 2011!!!). By the time November came I was ready to take someones head off. You will think every ache and pain is myeloma, but I try to think, if I didn't know I had this would I be concerned? There is a fine line with this as you cannot ignore symptoms but be careful, have regular blood tests, talk to your consultant and discuss worries and concerns with them. It is hard and I don't have any answers really except look after yourself and try not to worry too much (easier said than done especially at 3am)

Take care
Bev

[Anne57Participant]

Hi Beverley

Thanks for getting in touch.

Hopefully once I have got my head around things, will be as positive as you.

I was formally diagnosed on June 18th this year, at the moment I feel like I have a bomb jacket on but someone else has the remote control.

I suppose everyone feels like that initially.

Please keep me posted with how you are keeping.

Take care and kindest regards

Anne

[ronnie17Participant]

hi everly

I have had a mri scan and bone skeletal. the bone skeletal did not show anything, but the mri show compression in lower back and I also had a fracture on my T5. /The haemo said that this has nothing to do with the myeloma but i disagree. My back and rib pain has become increasing more painful and this all come about since 2009 to which I believe is when the hospital found para protein in my blood but did not advise me of this. It is only that I kept going back to my Gp with constant infections and more back pain to which they said was fibramalagia. my pain is getting really unbearable now and I am constantly on pain killers but they are still saying not myeloma. I have a CT scan on the 7th of August so just waiting for the outcome of this.

[docmikeParticipant]

Hi Beverley,and all your respondents .
I am 64 and am a virtually retired Consultant Gastroenterologist and have had smouldering myeloma(SMM) since 2008 .I have been on this forum before but you seemed to have provoked a good discusion on SMM ,with some of your respondents highlighting diagnostic problems which reflect some of the questions that we all ask ourselves, as well as our doctors.
My story;In 2008 a routine blood test revealed a raised globulin which prompted further tests (22gm/L IGG kappa). After been told everything was ok, two days later when the immunfixation result came back ,I got a message to ring my gp"it was urgent "!!!
As I got a holiday booked i did not have a skeletal survey and bone marrow until two weeks later . The xray showed an old wedge fracture of T5 which indeed turned out to be such 4 years later and osteopenia of the spine .
The bone marrow was equivocal on routine staining of the aspirate and was sent to newcastle for a further opinion on the trephine sample ,; two weeks later the result came back and my heamotology colleague walked into my clinic ,told me to drop everything ;I had MM and needed treatment (I had expected such after the delay).
Next day i had a MRI which did not reveal any bone lesion therefore =?SMM. I was observed for 4 months ,after which I retired for a day and then returned part time . I remain well as I write this letter with stable bloods, negative urine and no change in the mri or dexascan .
But I have asked all the questions you will have thought of, but also reviewed the medical literature to see if I can get the answers and perhaps Ive challenged my haemotologist more than most .
Which brings me to doctors .For obvious reasons I have to be careful not to crictise individual doctors but doctors notoriously make bad patients .This is not only due having too much relevant knowledge but they begin to see the whole picture because they also (at last?)see the patients point of view!! .This a lesson I learnt 7 years ago ,when after a needlestick I contracted hepatitis c and joined two hepC patients forums and found myself unable defend the indefensible with the two main problems being doctors not listening and "fobbing off" the patients and doctors not realising/admitting their errors in thinking as a consequence of this action.(The hepC patients taught me a lot) Just for the record I am sure I have also been guilty of this .
But I do see SMM from the patients point of view .
However, I can admit I had never heard of smouldering myeloma in 2008 but did know a little about monoclonal gammopathy MGUS .Even then I had not realised that MGUS effects 3% of people in their fifties ,5% in their 70s but I have not found figures on the incidence of SMM nor indeed how many people with MGUS change into SMM. About 90+% of people with active MM had prexisting MGUS many years before . I happen to know i did not have MGUS in 2005 !
Most information on SMM comes from the usa, particularly the mayo clinic as they have a large enough cohort of such patients to provide more reliable clinical statistical evidence . Im not sure whether there are such cohorts studied in the uk but regional myeloma mdts will pool their experience rather than individual clinicians.
The first question ;What are my chances of developing MM ?
An average accumulative risk of 10% per year for the first 5 years ( yes this is most my risky year that approaches), then 3% per year for the next 5 years and then down to 1% per year after (?less risk than MGUS???).
What are the higher risk factors which have been used to define low ,intermediate and high risk groups by their presence or absence ?
a) percentage of plasma cells in the bone marrow and in particular the percentage of abnormal plasma cells
b) M spike >30gm/l
c)An ever changing Free light chain ratio( <0.125 or >8)
d) some chromosomal /dna changes in th abnormal plasma cells
e) whether other immunolglobulin are reduced (immunoparesis )
Can treatment be given to prevent M M/
Generally speaking it has been thought that the risks of side effects of treatment outweigh the potential benefits of treatment in SMM until the Quiredex study from spain which showed some benefit from lenalidomide/dexamethasone in the high risk SMM. So watch this space for results of further trials elswwhere which with further favourable rersults could in turn lead to a trial in uk?
What symptom ,sign and/or test/s confirms progression towards MM? Is the measurement of the M spike every three months a 100 % fool proof ?
Anecdotally I have a friend with MGUS who developed pain in his hip who was reassured by initially unchanged M protein only to find that a later MRI confirmed MM by which the m protein had risen but i think was still below 30.
A retrospective study in the usa involving the people who had mgus before MM, a progressive change in the free light chain ratio preceeded the devlopment of MM and well before the rise of the M protein .But the FLC ratio is expensive to perform not funded routinely in many uk hospitals .
A mri or pet scan is superior to skeletal survey . The pet scan is expensive and jealously guarded by the radiologist but this was the case when ct and the mri first came on the scene . I suspect that even with a high false positive rate, it is the best test. But tweaking the mri scan can also show bone marrow activity .
A mri of spine on yearly basis seems the best way to detect disease hopefully before potential damage to the spinal cord or the fracture of the spine which can lead to the need for permanent pain relief.
Bone pain ,rib pain in the absence of trauma and anaemia seem to be the commonest symptoms but other manifestation cam herald MM.
Hopefully new markers of progression will appear to help define who requires treatment which could be reliably given as early as posible which only be good thing rather than waiting for bone problems
.
Which treatment should be given first is the ongoing big question but Nice witholds the newer treatments for relapsed patients only . So aceess to newer therapies which seem more effective, usually means entering an organised trial and hoping you recieve the newer agent. The good news is that there does seem a lot more new agents on the horizon even in the short time ive been on this forum ;getting access to them may be a problem
but that is better than having just a limited range of options.

So hopefully Ive answered your qustions that I anticipate that would cross your mind and helped others who have added to this discussion. It is purely my personal perspective and is hopefully informative (ie reading between the lines type approach.) There may be information you would rather not be aware of but I ve also had deal with that too;though it has been easier once I knew I did not require treatment straight away, I still know Ive got about 20% chance of avoiding MM.

Best Wishes Mike

[eveParticipant]

Hi Mike
This is just a welcome to the site:-)

When I read your post,my own immediate thoughts were so selfish,one was we will have our own resident expert,as this is what you would become,you might not know much about Myeloma at present,you will learn,just to prepare yourself[just incase]:-P
Then my thoughts were for you as a person,and I hope it never gets to the position of full MM.

So you are very welcome,but so sorry you have joined this roller coaster.Eve

[docmikeParticipant]

Hi Eve ,
Thank you for the welcome .Ive come to terms with SMM especially after avoiding treatment for four years having been told CDT was imminent . Clearly I have researched SMM but have also kept abreast of relevant clinical trials ,an area which I have had expertise since 2005.
Clearly I have not been on treatment but I do know that there are three types of side effects .The theoretical/text book side effects , the side effects the doctor perceives and the side effects the patient actually experiences and the three are not the same ,unfortunately . It is learning about the latter which is the knowledge base of this forum together with how the experts manage these side effects because that is often the basis of their expertise.
The good news is ,in the last 4 years ,there are more agents potentialy available with the trend to greater efficiency and (reputedly) less side effects . Avoiding painful sensory neuropathy and reducing the dose of dexamethasone in regimes are desirable goals ( I had not appreciated the bad days on steroids until reading on this forum )The bad news is that the new drugs are only available in trials in the usa . So if I needed treatment tommorrow and everyting was available to me. I would plump for carfilzomib, lenalidomide(but palmalidomide may be better?)and low dose dexamethasone as the response rates are the best available .This is not going to happen in the uk for 5years ?
unless…
best wishes Mike

[eveParticipant]

Hi Mike

Well as you know,the patient does not get much choice,it,s either trials or treatment as laid down by NICE and all of this is still a post code lottery, If you are lucky and can find a Haemotologist that has a special interest in Myeloma and also has some perspective about the awful damage and pain it causes,physically and mentally,patients might have a better journey on this roller coaster.
As you said how much do you want to know!!,Well as a carer I can tell you my attitude at this present time,this is with the knowledge that my husband has in my opinion,stage 3 myeloma,after 18 months achieved SCT which we are now waiting on BMB,to see if he has any time without treatment.My opinion is when you start adding extra problems to the above,is well it,s just another thing,All the shocks have been done.

I do not expect to see the man my husband was and he will never ever be the same physically or mentally,but he is still alive and has the will to live, this is the opinion of a carer,I just wish doctors,would take on board the fact,that we are human beings,who in are own way have become the experts on the person we look after.We are not looking at thing through rose coloured glasses,Eve

[CarolBradley1Participant]

Hi Beverly
Sorry that I am late in replying but a very big and warm welcome although I wish we could have met in a different way.

I was diagnosed with smouldering myeloma in 2005 and did not require treatment (other than for anemia) until 2010. After chemo and a stem cell transplant I am still getting stronger every week and am now horseriding again and doing my own housework etc!

You could be lucky and go on for years and years smouldering away without developing anything further so chin up!
This is a great website and the lovely people here always understand when we are upset or down and between us we seem to have tons of experiences to share too.

Very best wishes
love Carol xxxxx

[ronnie17Participant]

hi beverly

I was told that I have asymtomatic myeloma. Although just recently confirmed that this is this I beleive I have had this since 2009. What concerns me mmost is that I beleive that the Haemotologist has got it all wrong and that I am symptomatice as I am anaemic have raised protein levels and raised plasma cells and severe bone pain in my ribs, back and down my right leg. I am going for a second oepinion at the royal Marsden Hospital this thursday so hope that they listen to me a little more.

[ShushParticipant]

Hi all I'm 52. I too was diagnosed with smouldering mm in 2009 after routine blood test. It just so happens that at that time I had a blood clot in my leg that travelled to my lungs.Had a hysterectomy too that same year. I feel a bit of a fraud with smm as i go for blood tests every 4 months but thank Gd apart from the blood clot and hysterectomy (oh and blood transfusion) 4 years ago, I feel very well.

[Author]

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