[ellenModerator]

Dear Dai

Thank you for your post about subcutaneous Velcade. We have been tracking the development of subcutaneous Velcade for some time. The data are impressive and the company have submitted a file for an extension to their current licence. It is likely that they will receive this, but we are not exactly sure when. When they do, it will need to get approved for use on the NHS. We are not 100% sure what the approval mechanism will be, but we are working to find that out.

Until it is approved for use on the NHS, it will not be widely available. That said, we know of a number of doctors who are using it now via what is called off-label use. We expect this use to steadily increase.

In addition, there are a number of trials in the pipeline in the UK which include subcutaneous Velcade, including one in our own Early Phase Clinical Trial Network.

Ellen

[ellenModerator]

Hello Jayne

I just wanted to let you know of a Myeloma UK programme called PEER (Patient Experience Exchange Resource). It's where we put patients and family members in touch with other patients and carers by phone to talk things through and share experiences. I know that one of our PEER members has had an Allogeneic transplant with DLI.

If you think this would be helpful for you, please contact me by email to asktehnurse@myeloma.org.uk or on the Myeloma Infoline 0800 980 3332 and I can arrange this for you.

Kind regards

Ellen

[ellenModerator]

Hi Mandy

I am sorry to hear that your Father has Waldenstroms Macroglobulinaemia (WM) and that you have been diagnosed with myeloma and I can understand your concerns that there may be a genetic link

Myeloma and WM are related conditions both being cancers of plasma cells within the bone marrow. They are not considered to be inherited cancers however the exact causes are not known. A number of risk factors have been identified and whilst they can occur more than once in families this is very unusual. It is likely that the reason some people develop myeloma and related conditions is not down to one single factor but rather a combination of many different factors.

I hope that this has been of some help, but please do not hesitate to contact me on the freephone Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk

Ellen

[ellenModerator]

Dear Clarabel

I am sorry for the delay in replying to you I had hoped that another person affected by AL amyloidosis would reply and share their experiences. I moderate the discussion forum but try not to intervene too much. If you have any questions you would like me to answer then please contact me or my colleague, Maggie, by phone on the freephone myeloma Infoline on 0800 980 3332 or by email to askthenusre@myeloma.org.uk I can also send you an Infopack on AL amyloidosis and one on myeloma.

AL amyloidosis is a related condition to myeloma which arises from plasma cells just as myeloma does, but it causes different symptoms and complications. It is treated in the same way as myeloma i.e. usually a combination of chemotherapy, steroids and the drugs thalidomide, Velcade and Revlimid. A Stem Cell Transplant is another treatment option and would certainly be discussed with patients who are suitable for this procedure. These treatments are equally effective for patients who are diagnosed with both AL amyloidosis and myeloma.

Anyone diagnosed with AL amyloidosis should be seen at the National Amyloidosis Centre at the Royal Free Hospital in London. This is a centre of excellence for all types of amyloidosis and your father?s haematologist should be able to arrange this for him.

Kind regards

Ellen

[ellenModerator]

Hello Jill

I have spoken to Maggie here at Myeloma UK who is head of our research and clinical information services. She is not aware of any such trial in the UK. She also said there was unlikely to be any specific prospective trial of this sort but studies may be done retrospectively.

If your husbands? doctors have suggested that he may have Myelodysplastic syndrome then it might be an idea to contact Leukaemia and Lymphoma Research. Call their Clinical Information Officer on 020 7269 9060 or email him at clinicalinfo@beatbloodcancers.org

I hope this helps but if you do have any questions please do contact me directly on the freephone Myeloma Infoline on 0800 980 3332 or email me at askthenurse@myeloma.org.uk

Ellen

[ellenModerator]

Hello Dai

I am sorry to hear that you are experiencing Peripheral Neuropathy; unfortunately this is a fairly common side – effect of some treatments for myeloma. It can also (rarely) be caused by the myeloma itself. So I would say that strictly speaking it?s not really classed as a related condition.

Have you had a look at our Infosheet on peripheral neuropathy? It does contain some useful information and has some tips on what you can do to try and improve the situation. If you have any questions please don't hesitate to call me on the Myeloma Infoline on 0800 980 3332 I will do my best to answer them.

Oh and please don?t' worry there wont be a new condition on the guidelines for using the discussion forum saying that it all should rhyme. Although that would be interesting.

Kind regards

Ellen

[ellenModerator]

Dear Roz

Myeloma UK aims to respond to all donations by letter within 48 hours of receiving them. I checked with our Fundraising team and a letter of acknowledgement has been sent first class, generally we try to keep costs down by sending all mail second class. I'm sorry for any upset this delay may have caused.

Kind regards

Ellen

Myeloma Information Nurse Specialist Myeloma UK

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