Dear Charlotte

I'm sorry to see that you haven't had any replies to your post. I hope you don't mind me replying, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

I think that the reason you have had no replies is that solitary plasmacytoma is fairly rare and it may be that none of the folk who…[Read more]

Dear Stephen

Thank you for this, it is very useful, very comprehensive and explains the stem cell harvest process very well.

Ellen

In the past, thalidomide has caused devastating birth defects. For this reason its
use is carefully regulated under a risk management programme designed to prevent
exposing unborn babies to thalidomide.

This programme is called the Pregnancy Prevention Programme and was a
mandatory requirement before thalidomide could be considered for…[Read more]

Hello Mari

I am glad to hear that Stephen is doing well on Velcade with minimal side-effects and that his paraprotein is less than 2.

Velcade is currently only licensed by the Medicine and Healthcare Products Regulatory Agency (MHRA) to be administered intravenously and is approved by NICE on this basis.

In the USA, the Food and Drug…[Read more]

Thank you for this Jorge. It is indeed an error and will be changed today.

All the best

Ellen

Hi Debs

This is indeed very interesting and we will be posting a briefing on the news section and on here next week.

Vaccines in general have been looked at for a while in myeloma and other cancers. This particular vaccine is stimulating the immune system to target a protein called MUC-1 which is over-expressed in ~90% of all cancer cells…[Read more]

Dear Pete

Thank you for your post, but as Dai points out this forum is mostly used by myeloma patients and their families. It may be best if you were to contact Leukaemia Research on 020 7405 0101 Monday to Friday 9am – 5pm

Or via their website at :-

http://leukaemialymphomaresearch.org.uk/

I hope this helps

Ellen

(Myeloma…[Read more]

Thank you for posting on the discussion forum. My name is Ellen Watters and I am one of the Myeloma Information Specialists at Myeloma UK

I am sorry to hear your dad has been told his myeloma is in his brain. I hope you don't mind me responding but this is an extremely rare complication and I don't think any of the discussion forum users…[Read more]

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]