Thank you Heath. This is something that I have come across a few times since joining Myeloma UK and have spoken to one or two patients and carers either on the Myeloma Infoline or by email.

I have checked with my colleagues here at Myeloma UK and wanted to let you know that an Infosheet on Plasma Cell Leukaemia will be available in the near…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]