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]

Hello Tom

Liccle ole you Iam glad i joined the forum, and found it just by accident,Just searching around the net, and it is nice to know that the support is around.
Thanks Tom onwards and upwards

love Ann

Hello David,thank you for your welcome, I am glad i have joined the forum, and up to now, everyone has been very welcoming.Looking forward to hearing from you again.Ann

Hello Michelle,I retired at 63yrs, then went back part time for a further two years.I am now 69yrs and have always enjoyed my retirement, even though i was diagnosed four years ago. I just live my life to the full.I stared my training back in 1972 and stayed in the hospital setting for six years, then decided on a change, i had two options at the…[Read more]

Hello Broncho
Thank you for your response,I did have radiotherpy last July which helped with the pains six doses in all.I was diagnosed four years ago, and monitored every three months sometime two monthly,After the radiotherapy my haematolgist was cosidering starting me on chemo,and was to have a mutidisplinary meeting to discuss…[Read more]

HI Michelle
Thank for your reply, i hoping that my appt may come through this week,although i know orthopaedic are usually slower giving you an appt,so i will just have to be patient,I do think i have been very lucky,having a good haematologist and radiotherapist. It was just unfortunate that i was diagnosed just after had retired…[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]