[MothasParticipant]

I'm going through staging process at the moment and given the lack of detectable paraprotein or Bence Jones in my urine, we might be looking at a staging that includes extra-medullary MM. Having had a quick read of the research literature it would appear that this is a more aggressive form of the disease than we were hoping for with poorer remission times and worse statistics for overall survival. Hmm.

I would appreciate any advice or insights anyone on here has of this variant of MM

Many thanks

tom

[eveParticipant]

Hi |Tom
The school of thoughts with consultants is you should not,look at staging as the one and only aspect of myeloma ,as far as I know,staging tells you not only about bloods and urine,but the extent it has damaged the bones.
Everyone is aware the early cancer is caught the better the chance of curing it,but Myeloma is not curable.

Once the myeloma cells are no longer in the body or bone marrow,you are in remission,and it is just waiting until it comes back,the amount of damage it does is different,that is why you have people with little bone damage who get there life back on track,and other people with a lot of bone damage,suffer a lot of pain,either one can come out of remission at any time.

My husband is in an usual position of results showing good blood and kapper light chain results after CTD but the myeloma had gone up to 80% in bone marrow(this is very unusual) it only showed up on another BMB,so he started Velcade after treatment and another BMB he had no life Myeloma cells in his bone Marrow.
So although the body is Myeloma free,the damage it leaves behind is extensive.
I believe having extensive bone lesions and damage,does not mean you are less likely to survive than some one with stage one symptoms.A good example is the people like Outdoor Paul who succumbed to Myeloma a few months ago.
What you are saying gives the wrong impression to people just starting out on this journey,I would hate to think a new comer on here would choose no treatment,because they have lots of damage to the bones or high Myeloma cells in there bone marrow,because there chance of getting remission is just the same as anyone else. Eve

[HelenParticipant]

Dear Tom
When I was diagnosed I was told that I had 'a myeloma' . Subsequently it has been described as oligo secretary light chain myeloma IgA Lambda, roughly at stage 2-3. This means that i produced little detectable paraprotein or light chains but bone marrow biopsy was 60% disease. I needed to know all this detail at the beginning while trying to make sense of the whole 9 yards. Since then though, the type seems to be immaterial really as the treatment is the same for all so far, ( though new genetic diagnostics are suggesting that some myelomas do better with certain drugs rather than others, and some myelomas are more aggressive than others, but outcomes for all are still unpredictable. I.e. someone with an aggressive type can do well and someone with a less aggressive sort can do badly. Now however this theory is not tested enough yet for those of us in the system, we have to have the best of what is currently available, which on the whole we do get in the uk) anyway, as each of us is different, treatment usually starts if end organ stage is reached in either kidney, bone and raised calcium or anaemia. There is usually more than 40% bone marrow ablation by the myeloma cells at this point. I understand solitary plasmacytoma to be 'extra medullary' myeloma, as mm cells are seen most in the medulla or marrow of the bone. These tumours can be treated locally with radiotherapy, sometimes never recurring and sometimes turning into full blown mm. I would ask for clarification from your consultant, as Eve says though, staging is not considered the best assessment tool. Also I don't consider my chances to be any different from anyone else's with this disease, and as she also says, treatment still carries the longer and better outcomes. After all 40 years ago when I started nursing, 2 years was seen as good survival with mm, now we look, as a group at 5-10 years or more, but no one know who will get 2 years or who will get 20, we can only go for what is available and hope for the best.
I do hope this is intelligible !
Love Helen

[eveParticipant]

Thank you helen for doing a better job of explaining it than me,although I understand why Tom is thinking along these lines,I just felt it would give the wrong impression to any one who read it.

I would like to say,Slim has a lot of damage,tumour plus lesions on shoulders and skull plus all spine damaged but no compression ,plus Pnuemonia leaving blod clots and wedge shaped wholes in lungs,I have come close to losing him,but with treatment of CTD then Velcade then SCT,he is doing well in remission ,has strong pain killers,and has a head of black curly hair,putting on weight slowly,he will never be the same as he was before Myeloma,but it is nice to see the doctors smiling knowing how well he has done.

He goes for another .BMB next month as this is the only marker they can be sure of.
So never give up hope.Eve

[VickiParticipant]

Yes Tom, I echo all of the thoughts above. I read that staging is not used any more!

No one mentioned staging to us and as far as I'm concerned I don't want to know. Just treat the mm and get it out of the body! Lots of effort but let's keep it going! I do understand how it's worrying though as I do enough worrying for the both so us here!

If I were you perhaps it's worth sitting down with your consultant to understand what this 'diagnosis' means in reality, as Helen says treatment is treatment and although it looks rough at the beginning they can zap it, whatever it is 🙂

Keep fighting!

Vicki and Colin x

[MothasParticipant]

I'd like to thank everyone for replying it's been most useful. The wisdom of the board is a wonderful thing.

I wasn't really talking about the link between staging and remission/survival per se, but really wanted some insights into the sub-condition of extra-medullary development which has been bought up as a possible condition as a result of my staging process. EMD can be present at any staging and at the occurrence of the disease and much later on with people have have gone on and on.

I totally agree about the caution of using staging as a predictive indicator. Apologies for the lack of clarity, I've had a gazillion tonnes of Dex this week, several squirts of Doxyrubicin and Velcade. I'm not quite with it!

🙂

For those interested in some of the latest clinical research into extra-medullary MM here are a couple of links from:

[b]Haematologica[/b]:

"Extramedullary involvement in multiple myeloma"
http://www.haematologica.org/content/97/11/1618.full

doi: 10.3324/haematol.2012.078519
haematol November 1, 2012 vol. 97 no. 11 1618-1619

and

[b]Nature[/b]
"Extramedullary disease in plasma cell myeloma: the iceberg phenomenon"

http://www.nature.com/bmt/journal/v48/n1/full/bmt201226a.html
Bone Marrow Transplantation (2013) 48, 10?18; doi:10.1038/bmt.2012.26; published online 12 March 2012

[HelenParticipant]

Hi Tom
So, do you have soft tissue lesions? Did you have an MRI scan or ct scan to exclude lymphomatous lesions at the beginning? The diagnosis is sometimes difficult at the edges of the condition but in those situations the decision has to be made and treatment started, usually based on clinical need for treatment. Also how the disease progresses and relapses is a very different kettle of fish as the cells are immune system based and seem to have a mind of their own. You really need to sit down with someone like a specialist nurse who has time to explain what is happening to you. As far as I can make out from the literature, which while it is robust enough, it is currently looking at very small numbers of atypical patients and would need more testing to see if their hypothesis holds in different groups, in different countries. I do think you are alarming yourself a bit, but I understand that, I exhausted the library in the early days, doing the same thing. You must remember that you have as much chance of this treatment working successfully for you as the next person, and just use the time you are given to do the things you planned, until the treatment stops working, whenever that is.
Try not to worry too much about it, at this stage you have little control over anything I know but you can beat yourself with the 'prognosis' stick for only so long. In the meantime you just have to get on with the endurance test which is the treatment. I'm sorry if this sounds a little harsh I don't mean it to sound so bossy, I think what I'm trying to say is that we can't be looking for 'other' treatment or causes once we start on the treadmill of PAD etc as this is the route which has been set for us, and it is our first and hopefully best, successful route to remission, to chop and change around is not an option and so makes worry only an additional burden.
It is a horrible emotional roller coaster on the dex too>:-(
Love Helen

[MothasParticipant]

Helen thanks for taking the time to offer such detailed and thoughtful advice.

I've managed to talk to my consultant and , apparently it looks like I have a pretty standard multiple foci of BM-based disease and not Extramedullary. Sometimes, there may be 'extramedullary extension' of disease but not it this case.

I'm learning. Talk to consultant first, go to research second if necessary.

[eveParticipant]

Hi Tom and Helen

I have always thought that soft tissue myeloma is very very rare ,there have been a few people on here with it usually discovered because of another reason,not looking for Myeloma.
Tom are you saying you have no Myeloma showing in bloods or urine?????
So are you looking for answers????
A Pet scan will show any Myeloma in soft tissue
As I said earlier Slims Myeloma does not show in results of B&U,and the only way to see the whole picture is BMB.
I think on trials they are discovering some changers to chromosomes,but it is in infancy in reseach,this is were the Myeloma Trials are important.
If you are looking in Ellen,may be you could enlighten us.
Tom if it is the case it is no longer showing in B&U,it is just unusual,a bit more of a worry,but as I said Slim has BMB because it is the only way of telling what is going on in the bones.

I think they know by earlier test,if you have a Myeloma that is aggressive,Slim has Myeloma IgG which is the most common,I think there are about 5 or6 different types,it is a pity the experts do not explain this,as it does give rise to worry.Eve

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