[wifeofParticipant]

Is there anyone out there with this type of Myeloma? My husband was diagnosed with this type of Myeloma  in January  2014. He had an ASCT in September and the results from a recent bone marrow biopsy and PET scan are very encouraging.

I was wondering how this type of Myeloma is monitored as it isn’t detectable in blood or urine. We spoke to his consultant and he said to repeat the tests again in three months and if they are good then we can go to six monthly testing. This seems a very long time between tests when secretory patients get their bloods check more regularly then that.

I would be very grateful if  anyone could share their story if they have this type of Myeloma.

Suzi

[ellenModerator]

 

Dear Suzi

 

I am sorry that no one, as yet, has replied to your post. It may be that no one has the experience of non – secretory myeloma. I hope you don’t mind me replying. My name is Ellen and I am one of the Myeloma Information Specialist here at Myeloma UK.

As you know, the majority of myeloma patients secrete a measurable paraprotein. Patients diagnosed with non-secretory myeloma do not produce a paraprotein; this type of myeloma is rare but is no different to secretory myeloma in terms of treatment options and how it affects the body.

 

The problem is the difficulty in monitoring given the absence of paraprotein in the blood. Most patients with non-secretory myeloma would therefore be monitored through regular bone marrow biopsies, close monitoring of the healthy bloods – the red cells, white cells and the platelets is also important as they can be affected by myeloma activity. It is also important for the patient to report promptly any signs or symptoms that may mean the myeloma is active those may be new or increasing pain or fatigue and recurrent infections.

A  PET scan can be useful in identifying response to treatment or relapse in those patients who have non-secretory myeloma as it identifies areas of fast dividing cells and can quickly pick up changes in myeloma activity or areas of new activity.   However there are other cells of the body which divide quickly and this can occasionally throw up ‘false positives’. Again this is why the patient needs to be vigilant.

 

I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332. Alternatively you can email directly to askthenurse@myeloma.org.uk and I or one of my colleagues can clarify things for you further.

With best wishes

Ellen

 

[andygParticipant]

Hi Suzi.

As Ellen says non-secretory myeloma is rare. I’ve been on this forum since 2011, I think, and can only recall one other case.

My knowledge is even though paraprotein monitoring is important the whole blood analysis is important and a good indication of myeloma activities.

Some can live with high PPs and smoulder whilst others have low PPs and struggle with the disease.

I’m assuming it’s the BMBs that will be at 3 & 6 months with regular blood tests in between.

My advice would be to monitor your husband and any changes in mood, health, and mobility get out the the thermometer ASAP to check he’s ok. My wife is always checking to see if it’s ok if I’m a bit “off’ .

Sorry it’s not much help but from my experience a thermometer and a vigilant partner can make a big difference in treating the effects of multiple myeloma because we all tend to think when things go wrong ” it’s only a cold” etc etc but in reality we can’t afford to ignore any symptoms at all.

 

Every day is a gift

Andy xx

PS. Hope you had a great Christmas and the New Year brings you everything you hope for Suzi.

You too Ellen and everyone else at MyelomaUK xx

[Author]

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