[sueperkinsParticipant]

After feedback from Discussion Forum users, we have created this new separate section of the Discussion Forum for any posts related to AL amyloidosis.

Please feel free to post any questions, information or thoughts about AL amyloidosis here.

Best Wishes
Sue Perkins
Service Development Manager
Myeloma UK

[nikitasinghParticipant]

Hell0,

My father is a myeloma patient , diagnosed in March 2013 and undergone SCT in July 2013. It has been 1 and half year since he has been on maitenance treatment of Revlimide. As of now he is in complete remission. But he is experiencing symptoms like slurred speech, swelling all over body including face and upper palate , constipation, neuropathy etc. Currently he is on Rev 5mg OD through 21days of 28 days cycle. I am just worried are they symptoms of Ameloidosis? How do we go forward, how can we identify whether they are side effects of Rev or Ameloidosis. Can someone help?

Thanks & regards

Nikita

 

[lindahamiltonParticipant]

April 2, 2015

Hi, I’m not sure if I’m in the right place but as this appears to be the Welcome to the new AL Amyloidosis section, I’m assuming I’m where I should be. I received my diagnosis today of AL Amyloidosis. This is literally day 1 for me. I’d never even heard of this until today. From what I have read in the last 5 or so hours I have to say I think I’m still in a mild shock to find myself in this condition. I’m sure over the coming weeks I will be revisiting this site for information, inspiration and anything AL Amyloidosis related. I’m Linda, 54 and I just wanted to introduce myself here and say if anyone would like to let me know what I’m in for or any other helpful information please feel free and I’m looking forward to engaging here.

Thanks,

Linda

[duncanParticipant]

Hi Linda,

I’m Duncan 52 and living in Torquay Devon.

I got a diagnosis of trachea and bronchial tree amyloidosis 3 years ago. Amyloidosis is a rare thing to have and is different for everyone, there is a lot of scary stuff on the internet that’s not always correct  , i must say this is a very good site to have found, lots of good videos and info in the related conditions section.

You need to get the best of treatment and i cannot recommend the national amyloidosis centre at the Royal Free, if you haven’t already get your GP to refer you for an assessment and consultation there.

 

 

[duncanParticipant]

sorry i meant to say

You need to get the best of treatment and i cannot recommend highly enough the National Amyloidosis Center at the Royal Free  , if you haven’t already get your GP to refer you for an assessment and consultation there.

[jane-wrenchParticipant]

Hi there – I have both myeloma and Amyloidosis – both diagnosed in 1996- I’ve had 2 stem cell transplants – one in 1996 and one in 2001- and then velcade with dexamethosone and cyclophosphamide from April 2012 until last year- in remission again now and leading a perfectly normal drug free life – I’m treated for the myeloma at the Marsden and for the amyloid at the NAC at Royal Free Hospial – both of which have been brilliant – no one expected me to last long in 1996 – and that’s 19 years ago! I hope that gives you some hope and confidence!

[rosemaryParticipant]

Hi Linda

I was diagnosed with amyloidosis (kidney) and multiple myeloma in November last year.  I started chemo in January on CVD for 8 cycles.  I am on 3 week cycles (two weeks on and a week off) so hope to be finished at the end of June.  I have been quite lucky and have not had too many side effects and I am showing improvement.

It is very easy to read a lot of depressing information on the internet and I have found it best to stick to the Myeloma UK site and The National Amyloidosis Centre website where there is a lot of positive information.  Also to watch the lectures on Myeloma UK which really give hope for the future.  The NAC is a great help with a lot of support.

Good luck and keep well

Rosemary

[Author]

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