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General Discussions / Re: Response criteria
« Last Post by Miriam Vered on November 26, 2021, 01:44:52 pm »

About 10-15% of patients with AL amyloidosis have only minimally abnormal FLC, so FLC cannot be used for accurate monitoring.  A measurable M-protein (also known as paraprotein), defined as >5g/l, is useful for monitoring the haematological response to chemotherapy in these patients.

1-2% of patients with AL amyloidosis lack a measurable serum or urine marker to monitor response at present.  Ongoing studies are evaluating a new method called high sensitivity flow cytometry that may have a role.
General Discussions / Response criteria
« Last Post by Justme on November 26, 2021, 07:02:51 am »
Hello. Can anyone please direct me to the response to treatment criteria for AL Amyloidosis that is used when dFLC response can’t be used? Think it should be using paraprotein levels.
General Discussions / Re: Covid
« Last Post by NIGELJOH on November 25, 2021, 02:54:45 pm »
Thanks Miriam.
General Discussions / Re: Covid
« Last Post by Miriam Vered on November 25, 2021, 02:41:32 pm »
This is Professor Gillmore's answer to your question:
In the context of cardiac amyloidosis and heart failure, COVID may be associated with an increased risk of mortality/severe disease
Not aware of other additional risks

I also found a few publications (not from the NAC) that may be of interest:
General Discussions / Covid
« Last Post by NIGELJOH on November 24, 2021, 03:27:59 pm »
Hi ,has there been any studies /data in regards to how covid effects Amyloidosis sufferers and what we can expect if we catch covid.
And of course ,survival statistics.?
General Discussions / Re: Heel Pain after Chemotherapy
« Last Post by EMack on November 15, 2021, 09:49:54 am »
Hi Mark

Sorry to hear of your problems. I also have peripheral neuropathy in both my legs and feet and although I don't specifically get pain in my heels I do sometimes get 'electric shock' pains in my feet and have a general numbness and background pain level.

I'm afraid I can't suggest any treatments that worked, I just put up with it. However, on the subject footwear I have found Crocs to be pretty useful (I wear them indoors all the time) as they don't flex too much are easy to put on and take off and I suspect wouldn't put much pressure on your heels. They aren't attractive, though I believe are 'on trend' in some circles, but practical.

Best wishes

General Discussions / Re: Heel Pain after Chemotherapy
« Last Post by Paulhb on November 12, 2021, 05:25:38 pm »
Hi Mark,
This is something we both suffer from, I noticed this as an answer from another question, haven’t been there myself yet, but it might give you some answers.

“There is an online group for neuropathy that you might find helpful, it’s called ‘Stuff that Works”
Many thanks. Knowing that in itself is useful. I’ll discuss your reply with other family members. Best wishes

I'm afraid that without knowing the type of amyloidosis it isn't really possible to give much information. In very general terms, slow heart failure is more likely than a stroke or heart attack, but sudden events such as abnormal heart rhythms may occur in cardiac amyloidosis. It isn't likely to be possible to identify the type of amyloidosis based just on the echocardiogram and you would need your mother's informed consent to discuss her medical details with doctors with her not present.
Sorry I can't be more helpful.

Many thanks for your reply.

I'm not really sure where to go with this. I've read the general information about amyloidosis on the website but can see as you say that without knowing which type she has, its hard to see what information  on likely outcomes and trajectory applies to her particular case. I guess our problem is that my mum does not really want to pursue further investigations at this point and is not herself wanting to look ahead. We, as her children have different needs for information. We understand fully our mum's desire not to know more and let the illness take its natural course as she is 89. However, we are anxious to plan for looking after her and have questions in particular does it make her more likely to have a stroke or heart attack or is slow heart failure more the likely outcome? We have a copy of her Eco-cardiogram report, equipped with this, is there anyone we could discuss her diagnosis with, with her not present? at least to get some information on maybe the most likely type of amyloidosis she is suffering from and hence the most likely pattern of development. Many thanks again for your help.
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