I’m sorry that no one has replied to your post
This may be because no one on the Forum has similar experience. I hope this won’t put you off posting on the Forum in the future.
I hope that your appointment at the NAC went well. It sounds as if you have wonderful support from your family and that they are doing their best to help, but I can appreciate your frustration at not being able to do the things you want to with your son. It is hoped that once treatment stops the production of the abnormal (amyloid) protein that symptoms should improve. It can take some time longer unfortunately for there to be a reduction in the amyloid laid down on organs and an improvement in the function of these organs. It is a slow process I’m afraid.
There may be other ways you can get support; we have a service at Myeloma UK called the PEER Network. This aims to put patients who request support in touch with other patients going through a similar situation. One of our PEER members was diagnosed with AL amyloidosis 10 years ago, I am sure she would be willing to offer support and a listening ear over the phone. If you’d like to find out more about this service and how it works please give our Myeloma Infoline a call 0n 0800 980 3332 or email askthenurse@myeloma.org.uk
We also produce a free AL amyloidosis specific newsletter distributed three times a year. AL amyloidosis Matters includes all the latest treatment and research news along with feature articles relevant to those affected by AL amyloidosis. Do let me know via the contact details above if this is something you would be interested in.
You may be interested to know that Myeloma UK have an annual AL amyloidosis Infoday, this year it is on 20 November at the Park Crescent Conference Centre, London.
Infoday Presentations will include:
– Introduction to AL amyloidosis
– Current treatment strategies for AL amyloidosis
– Future developments for AL amyloidosis
– Management of complications of AL amyloidosis and side-effects of treatment
– Patient experience
I hope that this has been helpful but please do get back in touch if you have any further questions, would like further information about the programmes mentioned or would like to talk anything through
With best wishes
Ellen
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This reply was modified 9 years, 2 months ago by webteam.