Hi Lennie

Sorry to hear that you are having a rough time of it at the moment.

It may help to have a chat with one of the nurses on the myeloma infoline.  They are very helpful and know a lot about myeloma, so will be able to give you some advice or send you some information.

Hope this helps.
David

Hi Paul

Sorry to hear about your diagnosis, hope that you are coming to terms with what has happened.

There is lots of useful information available from Myeloma UK either as booklets or downloads.  I found them very helpful.  I would also encourage you to use the Helpline, the staff are fantastic and it is their job to help patients like us – n…[Read more]

Hi Chris, sorry to hear that you might be back on treatment.

There seems to be plenty of positive news coming out on the drugs front which gives hope for the future.

There is a MUK Infoguide series on Velcade and myeloma – this might be a good starting point for you and probably answers some of the questions in your post.
Seasons Greetings and…[Read more]

Thanks for this Sara, if anyone would like this in Word format to use as a template I am happy to send it on directly or via Sara.

Hi Neil

I would suggest having a look to see if there are any local myeloma support groups near to where you live.

There are now over 90 around the country so hope you fill find one suitable.  These provide an excellent opportunity to meet and talk to others in a similar position.  In the absence of a myeloma specific group there are plenty of h…[Read more]

Good to hear from you. You are a hero. As if myeloma wasn’t enough to cope with…….

David S

Hi Nihal

There is a good information guide in the publications section here on this website which you might find helpful.  Here is the link https://www.myeloma.org.uk/wp-content/uploads/2013/09/Myeloma-UK-Serum-Free-Light-Chain-Infoguide.pdf

If you need a hard copy then I am sure the Helpline will be able to arrange this.

David

Hi Nihal

Sorry to hear that your father has myeloma. I would have thought that the haematology team or your GP would be best placed to explain the significance of these results.

The problem is that you might not have the complete picture, so could jump to the wrong conclusion?

Hope this helps.
David

Hi Taff

I may be wrong but I believe that the biopsy may provide the medics with additional diagnostic information, as well as confirming the diagnosis or otherwise.  It may depend on the lab and what is being asked for etc.  Perhaps something to ask the experts?
Hope this helps.
David

Hi Taff,

Good to hear you are making progress through the system.  For me the bone marrow biopsy wasn’t too bad but expect to feel bruised for a few days afterwards!

They say that having myeloma is like being in a marathon, not a sprint, to put it into perspective!

Nice ,warm sunny day here near Liverpool, what more could you ask.

All the…[Read more]

Hi Taff, just to say that there is plenty of help available through Myeloma UK.  I found the information leaflets really useful as well as talking to the nurses on the Helpline. I would also recommend speaking to other myeloma patients, either at one of the local support groups or at a patient information day.

Hope this helps.
David S

Hi Sara, we have a Facebook page for the West Lancs and Sefton support Group which I do keep up to date but it has not been used at all by members. I think it is useful for those searching on Facebook and who like to use FB rather than web or email.

Hi Susie

I am at the Southport and Ormskirk NHS Trust on Merseyside.

I do recall seeing a report somewhere ( maybe on this website ) which seemed to support the collective wisdom that there was not a lot of benefit in having Zometa for more than 2 years. I don’t know if there is a gender issue here because presumably woman on average tend to…[Read more]