ellen started the topic Healthcare Survey from the University of Greenwich in the forum Off topic 9 years, 12 months ago
We have been asked to post a link to a survey that is being carried out by Doctor Jennifer Patterson on behalf of the University of Greenwich. The survey aims to seed innovative approaches to healthcare and to create a patient evaluation tool based on understanding of positive and negative patient experiences in ways that reflects the real lives…[Read more]
ellen started the topic Healthcare Survey from the University of Greenwich in the forum Off topic 9 years, 12 months ago
We have been asked to post a link to a survey that is being carried out by Doctor Jennifer Patterson on behalf of the University of Greenwich. The survey aims to seed innovative approaches to healthcare and to create a patient evaluation tool based on understanding of positive and negative patient experiences in ways that reflects the real lives…[Read more]
ellen replied to the topic What's going to happen next in the forum Carers 10 years ago
Dear Cathy, I’m sorry that as yet no one has responded 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.
An increase in the paraprotein reading can be alarming and the concern is that it may indicate that the myeloma is becoming active again. That said, many hae…[Read more]
ellen replied to the topic What's going to happen next in the forum Carers 10 years ago
Dear Cathy, I’m sorry that as yet no one has responded 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.
An increase in the paraprotein reading can be alarming and the concern is that it may indicate that the myeloma is becoming active again. That said, many hae…[Read more]
ellen replied to the topic What's going to happen next in the forum Carers 10 years ago
Dear Cathy, I’m sorry that as yet no one has responded 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.
An increase in the paraprotein reading can be alarming and the concern is that it may indicate that the myeloma is becoming active again. That said, man…[Read more]
ellen replied to the topic coping emotionally,,and nerves,, in the forum General 10 years ago
Dear Simon
I hope you don’t mind me replying to your post. My name is Ellen and I answer the Myeloma Infoline at Myeloma UK. It sounds as if you are in a very difficult place emotionally and psychologically. The feelings that you have are perfectly natural, you are absolutely not alone in having them, I’m sure many patients on this forum woul…[Read more]
ellen replied to the topic Smouldering myeloma in the forum Newcomers 10 years ago
Good afternoon Tony, thank you for your contributions to this forum.
Can I clarify that the article in Myeloma Matters – Autumn 2014 states that Green Tea should only be avoided when on treatment with Velcade as it may interfere with the way it works.
All the best
Ellen
ellen replied to the topic Smouldering myeloma in the forum Newcomers 10 years ago
Good afternoon Tony, thank you for your contributions to this forum.
Can I clarify that the article in Myeloma Matters – Autumn 2014 states that Green Tea should only be avoided when on treatment with Velcade as it may interfere with the way it works.
All the best
Ellen
ellen replied to the topic Smouldering myeloma in the forum Newcomers 10 years ago
Good afternoon Tony, thank you for your contributions to this forum.
Can I clarify that the article in Myeloma Matters – Autumn 2014 states that Green Tea should only be avoided when on treatment with Velcade as it may interfere with the way it works.
All the best
Ellen
hannahbingham started the topic Filmed presentations from our Patient and Family AL amyloidosis Infoday in the forum AL amyloidosis 10 years ago
For those were unable to attend our Patient and Family AL amyloidosis Infoday in September, the presentations are now available to view online:
Dr Julian Gillmore gives an introduction to AL amyloidosis
Dr Ashutosh Wechalekar explains current treatment strategies
ellen replied to the topic Advice in the forum Newcomers 10 years, 1 month ago
Dear Louise
I am sorry no one has yet responded to your post; it may be that none of the other forum users have the same or similar experience to that of your uncle. I hope you don’t mind me replying. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
There are a number of factors to consider when deciding w…[Read more]
ellen replied to the topic Calcium levels in the forum General 10 years, 2 months ago
Dear Ian
I am sorry that no one has yet replied to your query; it may be that no one has had a similar experience. I hope you don’t mind if I try to clarify things for you.
It is common for myeloma patients to have raised calcium levels (hypercalcaemia) and this often occurs as a result of myeloma bone disease which causes calcium to leak into t…[Read more]
ellen replied to the topic Leg pain making walking difficult in the forum AL amyloidosis 10 years, 3 months ago
Dear Brenda
I’m sorry that no one has yet replied to your post; it may be that no one has had the experiences that you describe. I hope you don’t mind me replying with some suggestions.
AL amyloidosis doesn’t generally cause the kind of pain you describe. I wonder if your husband is also on dexamethasone with his lenalidomide? Dexamethasone can c…[Read more]
azza and 
nicola are now friends 10 years, 3 months ago
azza posted an update 10 years, 3 months ago
Hi,
Am happy to one of Myeloma members.
as I described my mam who has da case and am very worried and busy minded about her.
she hospitalized for 3 month in local company in Sudan and now in doing well but still taking medicines given.
medicines were VLCD for 1 month , 1 dose per week plus and dexamethasone.
in addition of lots tablets.
but VLCD…[Read more]
azza changed their profile picture 10 years, 3 months ago
ellen replied to the topic Slow heart rate on CTD in the forum Newcomers 10 years, 3 months ago
Dear Wendy
I am sorry that you have not received any replies to your post. It is likely that a slow heart rate on CTD is not something that has been experienced by any of the forum users. However, it is known that thalidomide – the T part of the CTD combination – can cause a slow heart rate (bradycardia). It’s not a common side-effect but it is…[Read more]
ellen started the topic Eva Youren in the forum End of Life and Grief 10 years, 4 months ago
It is with great sadness that I pass on news of the death of Eva Youren. Eva’s husband has been in contact to say that she sadly passed away on 6 July. I know Eva contributed to this forum regularly; she was a great source of support for many of you and always shared her experiences carefully and thoughtfully for the benefit of others. Eva was al…[Read more]
ellen started the topic Friendly reminder in the forum Newcomers 10 years, 5 months ago
Hello everyone. As you know we do suggest you read our forum guidelines and the registration terms to get the best out of using this forum
It may help to try and be mindful of other users, they may be in a different place and if the diagnosis is fresh they will feel very vulnerable, very anxious and will perhaps be feeling very sensitive.
We…[Read more]
ellen started the topic Myeloma Infoline news in the forum Off topic 10 years, 7 months ago
‘Good afternoon, I am delighted to be able to share some good news with you. Myeloma UK has been awarded a quality standard accreditation by The Helplines Partnership for the tenth year running.
This quality standard covers the Myeloma Infoline (including the PEER network), Ask The Nurse email service and Discussion Forum and runs until May 2…[Read more]
