[mandap01Participant]

I was diagnosed with it by having a kidney and bone marrow biopsy at St James hospital Leeds. By then I was very weak and in a bad way and it was very difficult having them. I have very low blood pressure which put me in bed for about a year. My kidneys and heart and spleen are affected and just recently by gal bladder was playing me up. I have a wonderful partner who help me so much and has been there for the past year with this. I first started on velcade that’s what I think it was called but it went wrong and I ended up in hospital and had to change my meds and have a blood transfusion . I am now on revilimid which seem to be going ok but slow progress . I am due at the NAC centre on the 18th this month for a full check up and hope I have got rid of some of it. It has been a struggle and the side effects some times can be bad but you just have to go through the it.  I have a 7 year old boy and it breaks my heart not being able to play football and cycle with him. When I am not feeling well and find it difficult to get up stairs he comes running to hold my had up stairs so that I don’t fall it’s his way of helping daddy and that is so nice of him but it hurts me inside. I have all ways been very fit cycling to work everyday, cycling for charity Leeds and Liverpool canal, Leeds to Scarborough and long cycles after work and week ends. The first sign was when I came back for the gym one day and my feet were swollen that was the start of my nightmare.

[ellenModerator]

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

• This reply was modified 9 years, 3 months ago by  webteam.

[sharynboydParticipant]

Hi there

I have just come across your post and felt I needed to reply.

My husband has recently been diagnosed with MM and stage 3 AL Amyloidosis (mainly in the heart).

As you well know, it an awful journey.  We too have a younger daughter and the future is very frightening.

You may already be aware of the forum on the NAC website?  You just have to register and you can share various experiences.  Here is the link.

http://www.amyloidosis.org.uk/forum/

Stay positive x

[Author]

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