AL Amyloidosis

cuores

Starting a thread for those diagnosed with AL amyloidosis to discuss their experiences of this rare and difficult disease. AL Amyloidosis is a rare disease and unfortunately there is not much information available in Ireland for those diagnosed.

Personally, I was diagnosed with AL Amyloidosis by my Haematologist in Cork University Hospital via a biopsy in September 2017 after experiencing rapidly deteriorating overall health in the preceding months. I subsequently visited the National Amyloidosis Centre in the Royal Free Hospital in London where the diagnosis was confirmed. I have Amyloid present in my heart, liver, spleen and kidneys. I am on the standard CVD chemotherapy treatment for AL Amyloidosis of Cyclophosphamide, Velcade and Dexamethazone. Thalidomide has been added to the treatment for cycle 5 as the doctors are concerned that the light chains are not reducing quickly enough.

Anything on this thread does not replace getting information from a medical professional. I have no doubt that there are others who have gathered a lot of information around this disease and I would hope that this thread my provide some place for those diagnosed to share information and experiences.

cuores

An introduction to AL Amyloidosis for patients - Professor Julian Gilmore, Royal Free hospital
https://youtu.be/H6HG5wuFtP4

A comprehensive patient information website for those diagnosed with Amyloidosis
http://www.amyloidosis.org.uk/

cuores

Just posting an update to keep the subject alive if people are newly diagnosed and looking for some information. I am conscious that this is an extremely rare disease with only a handful of people diagnosed with AL amyloidosis each year and very little information information available in Ireland. All I will say is that if you do get diagnosed ask endless questions of your hematologist! I can't speak more highly of mine.
In my case after an initial positive response to Chemotherapy treatment the reduction in free light chains, which is the most important thing to get under control as fast as possible, has now slowed considerably. My chemo regime after 37 weeks has now changed in the hope that this will kick start again the reduction in Free Light Chains.
This is a very interesting link to a long interview with Dr. Mark Pepys, one of the leading experts in the diagnosis and treatment of Amyloidosis worldwide - https://youtu.be/nif9qRfsmsY
Very interesting in the interview is how he theorises that the very high mortality in patients diagnosed with Amyloidisis could be attributed to delays, sometimes measured in years, before the condition may be correctly diagnosed. These delays can be as a result that many doctors may have never heard of amyloidosis. Patients may present with chronic heart failure, kidney failure, liver damage or complaints relating to any vital organ which may be treated in isolation and it is very difficult to initially join the dots to Amyloidosis.
The interview gives a very positive outlook towards future treatment of this disease and drugs in trial.
Hopefully some of the content of the interview may be interesting to some readers.

LegacyUser

Hi, followed link here, my Haematologist is in the Mater in Dublin. You may have read my post on NAC site, I had bone marrow in March. Last bloods were taken in January, skeletal x rays were good, n my lambda light chains were low. Full MRI and Cardiac Echo at end of July, so no confirmed diagnosis. Should I be requesting to be seen at NAC in UK?

cuores

A link to a page on the Multiple Myeloma Ireland website about amyloidosis, why it can be confused with multiple myeloma, and how it may affect some people with multiple myeloma

http://www.multiplemyelomaireland.org/multiple-myeloma-news/report-amyloidosis-qa

cuores

Posting a link to the UK National Amyloidosis Centre patient forum, should have been in my first post!!


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

Some Irish patients are present on that forum also.