ellen replied to the topic Request for forum users to take part in a research study in the forum Off topic 10 years, 11 months ago
Thank you Helen
You make a very appropriate point. I contacted Brett and asked him the question and this was his reply. I hope this helps clarify things.
The department is the Faculty of Development and Society at Sheffield Hallam University. The research is part of a masters in Health Psychology, therefore its purpose is to gain an…[Read more]
ellen replied to the topic Here we go again in the forum Newcomers 11 years, 6 months ago
Good morning, I hope you don?t mind me responding to this topic, it is a question that is asked very commonly and I hope I can clarify some things.
Unlike some other cancers and diseases, like cystic fibrosis or some forms of breast cancer for instance, myeloma is not caused by a single inherited gene. However, people do inherit certain sets…[Read more]
ellen replied to the topic Jaundice in the forum Side-effects 11 years, 6 months ago
Dear San
I am sorry that you haven?t had any responses to your question as yet. This is probably because Jaundice is a fairly rare side-effect/complication and the other board users may not have any experience of it.
Jaundice (or yellowing of the skin and whites of the eyes) can happen for a number of reasons. Perhaps the most common cause…[Read more]
ellen started the topic Keith Hindmarch. in the forum End of Life and Grief 11 years, 6 months ago
It is with great sadness that I have to bring you the news of Keith passing in the early hours of this morning. I have just spoken to Sue and she wanted me to pass on her thanks to all of Keith?s online friends.
Sue has family and friends around her and is being supported in her grief.
On a personal note, I and many of the staff here at…[Read more]
ellen replied to the topic Auto;Allo;Mini Allo…..? in the forum Treatment 11 years, 7 months ago
Dear Domg6
Please drop me a line to askthenurse@myeloma.org.uk or call the Freephone Myeloma Infoline on 0800 980 3332 and I, or my colleagues, will do our best to answer your questions.
With best wishes
Ellen
ellen replied to the topic Keith Hindmarch in the forum General 11 years, 7 months ago
Good morning everyone.
I have just spoken to Sue and she has asked me to pass on her and Keith?s appreciation for all your kind wishes at this difficult time.
Ellen
ellen replied to the topic mgus check up in the forum Related conditions 11 years, 7 months ago
I am sorry that, as yet, you haven?t had any responses to your query. I hope you don?t mind me replying. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
Nose bleeds can occur for several reasons in the general population. For some people, frequent nose bleeds can occur as a result of low platelet levels.…[Read more]
ellen replied to the topic MGUS pregnancy in the forum Related conditions 11 years, 7 months ago
Dear Kim
I am sorry that, as yet, you have had no responses to your query. I hope you don?t mind me replying. My name is Ellen Watters and I am one of the Myeloma Information Specialists at Myeloma UK.
The issue of MGUS and pregnancy is one that has come up before on the Myeloma Infoline, so I have previously asked a number of…[Read more]
ellen started the topic Keith Hindmarch. in the forum General 11 years, 7 months ago
Hello everyone. I have just had a call from Keith?s wife Sue. She has asked me to pass on to all of Keith?s online friends that he is very poorly just now and is currently in hospital.
His doctors have taken him off all treatment as it is no longer keeping on top of his myeloma, and are doing what they can to keep his symptoms under control.…[Read more]
ellen started the topic EBMT Patient and Family Day. in the forum Treatment 11 years, 9 months ago
You may be interested to know of a patient and family day organised by the European group for Blood and Marrow Transplantation (EBMT) which takes place on Saturday the 6th of April in London.
Registration is £10 per person and haematologist from all over the UK will be presenting on all aspects of stem cell transplant. There will be informal…[Read more]
ellen started the topic 2013 Patient and Family Infodays. in the forum Off topic 11 years, 9 months ago
We have recently launched our programme of regional Patient and Family Infodays taking place around the UK throughout 2013. Infodays bring people affected by myeloma together to share experiences, hear from myeloma experts and to learn more about the support Myeloma UK provides.
Our 2013 dates and locations are:
? North Central (Leeds) ?…[Read more]
ellen replied to the topic Auto;Allo;Mini Allo…..? in the forum Treatment 11 years, 9 months ago
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]
ellen replied to the topic Blood reap in the forum Newcomers 11 years, 11 months ago
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]
ellen replied to the topic Blood reap in the forum Newcomers 11 years, 11 months ago
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]
ellen replied to the topic HOW DO YOU REPORT ABUSE OF THIS SITE? in the forum Off topic 11 years, 11 months ago
Thank you,
Stu will remove these ASAP.
All the best
Ellen
ellen replied to the topic Second Stem Cell Transplant in the forum Treatment 11 years, 12 months ago
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]
ellen replied to the topic Myeloma Matters Subscription in the forum General 12 years, 1 month ago
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]
ellen started the topic Manchester Infoday 22 September. in the forum General 12 years, 2 months ago
Patient and Family Myeloma Infodays are a great way to learn more about myeloma from experts in the field and to meet others who may be in a similar situation.
The programme for the upcoming Infoday at the Radisson Blu Hotel Manchester includes presentations from some of the top experts in the UK on current strategies for the management of…[Read more]
ellen replied to the topic not sure what's round the corner in the forum Newcomers 12 years, 2 months ago
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]
ellen replied to the topic Plasmacytoma – looking for good news in the forum Newcomers 12 years, 3 months ago
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]