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• 25th May 2017 at 7:22 pm #133554
  
  hampton50
  

  Participant

  Hi
  I’m due to start VTD next week but how we got hear is all a bit odd.
  I was diagnosed with MGUS in 2007, 18 months after my only child was born. I was 40. I was routinely monitored by my GP (who is excellent) but isn”t a specialist in rhis field; I wasn’t refered to a haematologist as I was told routine GP monitoring was all that needed to happen. Routine bloods were taken every 12 months until
  2013, when i was admitted to hospital with a possible blood clot in my lung, a scan didnt show anything but my bloods were abnormal and a referral to a Haematologist was then made, who is fantastic. Iwas monitored every 3 months as paraprotein levles slowly continued to climb but after taking Tumeric 1.6g daily levels stabilised, unfortunately the serum light chain didn’t. In 2015 My 1st BM biopsy didnt pick up anything significant, but because increasing serum light chain I was monitored every 8 weeks.
  In feb this year I had 2nd BM biopsy which showed 25-30%myelom cells, v mild anaemia, paraprotein levels of just 23 and light chain of under 300!! Not classically Smouldering myeloma so i thought monitoring would continue. The haematologist suggested a full body MRI and cytogenetic testing as just a precaution (funded privately as not available on the NHS) and yes it showed 3 lytic bone lession as abnormal chromosome 1q21 which instantly put me into high risk multiple Myeloma….. what happened to the middle stage!!
  I have no symptoms at all and all organ function and calcium tests are normal!!
  I look and feel very well, so you can imagine the shock…
  If I hadn’t had the luxury of funding my MRI and cyogenetic testing I would never have know I have high risk Myeloma and by the time I had symptoms the disease may have been quite advanced…
  I would implore Myelona UK in line with the Myeloma x1 trial to push for further discussions about routine cytogenetic testing on all newly diagnosed MGUS patients, this would give a more accurate prognostic indicater regarding disease progression and would also allow treatment regimes to be individualised. I know investigation costs can be high but this has to be weighed up against how much Myeloma treatment currently costs but more importantly to increase life expectancy for Myeloma patients.
  Thanksfor listening.
  Lisa

  8th June 2017 at 1:55 pm #133739
  
  ellen
  

  Moderator

  Dear Lisa

  Thank you for posting on the Myeloma UK Discussion Forum. I am sorry that you haven’t had any replies to date. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.

  Thank you for taking the time to outline the background information in your case – that is helpful.

  Unfortunately as you may know at the moment no definitive test yet exists that shows which patients diagnosed with MGUS will progress to myeloma and who will remain stable long-term. As you know the majority of MGUS patients do not go on to develop myeloma and as yet the cause of progression from MGUS to myeloma is not fully understood but as you correctly state probably involves changes at genetic level – research into this is ongoing. In the absence of any symptoms a GP would not be minded to refer all patients to a haematologist or to order genetic testing (florescence in-situ hybridisation – FISH test), as in most instances this would not alter management of the situation. As you may be aware FISH testing provides a ‘snapshot’ of the blood at that moment in time and we now know that genetic profiles can change from test to test.

  As a result guidelines outlined by The British Committee for Standards in Haematology (BCSH) do not currently recommend testing of MGUS patients.

  In contrast NICE guidelines for the diagnosis and management of myeloma patients (2016) do recommend FISH testing is undertaken on the bone marrow biopsy sample in order to provide prognostic information. Whilst this information – gathered within clinical trials – is contributing to the development of individualised treatment for myeloma patients, research in this area is also still ongoing and we are not yet in a position to stratify treatment for individuals.

  I will feedback your comments to my colleagues here at Myeloma UK and within the wider myeloma community when the opportunity arises. If you would like to discuss this further please do get back in touch via email to askthenurse@myeloma.org.uk or alternatively you can call the Myeloma Infoline on 0800 980 3332, Debbie, Jude or I will do our best to answer any questions you may have.

  With best wishes

  Ellen

  • This reply was modified 7 years, 5 months ago by  ellen.
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