Hi Dai, Bridget Min and Eve.

Thank you, as always, for your contributions to the discussion forum.

Dai this is a very tricky subject. One thing I?d like to stress, however, is that a high fluid intake is very important to keep the kidneys in the healthiest possible condition. The way the urinary measurement is carried is not influenced in…[Read more]

Having smouldering myeloma can be a cause of much uncertainty and anxiety, and I absolutely take on board your frustration that at present treatment is not recommended. The reason for this is that there is not enough evidence to suggest that the benefits of treatment at this stage outweigh the risk of side-effects. However, this is still an area…[Read more]

The latest news section on our home page has a questions and answer section which may be of interest.

http://www.myeloma.org.uk/intro-to-myeloma/myeloma-news/research-results-from-myeloma-uk-funded-study-published-in-prest/

Thank you for your questions Eve.

It may be best to contact either myself or Maggie directly. Email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332. We will do our best to answer your questions in order to clarify things for you.

Kind regards

Ellen

Dear Eve, I hope I can clarify things for you but as you know I cannot comment on individual cases.

In myeloma patients the percentage of plasma (myeloma) cells within the bone marrow can range from between 10% to 100% and is measured by a bone marrow biopsy. The percentage of plasma cells in a healthy individual is less than 5% and for MGUS…[Read more]

We have been following this thread very closely. Here are a few points the group may find useful.

There are a number of organisations in the UK that hold registries of donors for bone marrow and stem cell transplants. Both the ?Anthony Nolan? organisation (http://www.anthonynolan.org/) and the British Bone Marrow Registry (BBMR,…[Read more]

Hello Paul

I am sorry to hear that you have been diagnosed with light chain myeloma. I hope that the following clarifies things for you.

Normally, plasma cells in the bone marrow produce an enormous variety of antibodies, or immunoglobulins as they are sometimes called, to help fight infection. These are made up of two heavy chains,…[Read more]

It is with great sadness that I have to forward a message from a long-time friend of Gaye?s. Sadly Gaye died on Saturday at 8.45 pm at Fairhavens Hospice. Her friend asked me to let her friends on the discussion board know.

Dear Dai

You might be interested to know that Myeloma UK is in the process of setting up something very similar to what you have described, via the discussion forum – an online diary if you like.

The idea is to enable the patient to generate a ?treatment profile? and log down their experiences during their treatment course. They would then…[Read more]

Hello.. I am sorry that you haven't had any responses to your question. A syngeneic transplant is very rare in myeloma so it's likely that forum users don't have any experience of it.

This reply will bump your post back up though so hopefully it will be seen by someone who can answer your question.

Kind regards

Ellen

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]