Dear Vanessa,
Thank you for posting on the Discussion Forum, I am sorry that you haven?t had many replies. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I hope that the following clarifies things for you.
An allogeneic transplant involves the use of stem cells from a donor instead of using the patient?s…[Read more]

I'm not a patient but I speak to many patients and their families every day, either on the Myeloma Infoline or via email.

It must be so hard for you being so far from your son, please don't worry about picking up the phone and calling me or Maggie or emailing us. That is absolutely why we are here.

However, we are off after 3pm today until…[Read more]

I wonder if by ?Blood Reap? you mean stem cell harvest? This is a procedure where a patient?s stem cells are collected prior to a stem cell transplant. A stem cell transplant is standard treatment for myeloma patients who are able to tolerate it and is carried out very routinely in the UK.

To read more about the procedure, including harvest,…[Read more]

Thank you,

Stu will remove these ASAP.

All the best

Ellen

I am sorry that you haven?t had any replies from anyone who has experienced a second stem cell transplant. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.

I wonder if you have heard of our PEER programme. It is made up by ?PEER Members? ? patients, family members and carers ? who are willing to share…[Read more]

Mr Bradley, thank you for bringing this to our attention, we have now made the necessary changes. Please accept our apologies for any confusion caused.

I would also like to clarify that our free quarterly newsletter, Myeloma Matters, which you receive in an envelope by post is available on subscription. To subscribe, please contact Nicola 0131…[Read more]

Welcome to the discussion forum. I hope you don?t mind me replying to your post. My name is Ellen and I am one of the Myeloma Information Specialist at Myeloma UK. I hope I can help clarify a few things for you.

Pain is a big problem for many myeloma patients. There is much that can be done to treat and manage pain but sometimes it can take a…[Read more]

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]