[graham-cParticipant]

I finally received the diagnosis last week that I had been expecting since the beginning of the year – AL Amyloidosis.

The Consultant suggested that it should have been picked up earlier, but that’s water under the bridge now. I had challenged the Department as to my current diagnosis earlier in the year and they resolutely stuck with ‘MGUS’. I didn’t argue with them but referred to my list of results over the 10 years I had been monitored for MGUS. I had never raised any issues before but I noticed that my eGFR (kidney efficiency) had declined significantly recently alongside my light chains rising. Kidneys are the most likely organ to be affected in AL Amyloidosis. NICE make it a rule that at a certain rate of decline in kidney function then it has to be referred to Nephrology. I pointed this out and I then embarked on a major series of tests including

Blood Tests for Haematology & Nephrology
Full body PET scan
Bone Marrow Biopsy
Echo Cardiogram

My latest blood test results
eGFR 35
LLC 1,200
Paraprotein 14.5
Ratio 0.01/0.02

It was mentioned that I would be sent to the NAC in London for a scan. Before that I’m due to have another blood test and MRI scan which I presume is preparation for NAC.

Nephrology couldn’t perform a kidney biopsy and the Haematology Consultant said that I wasn’t suitable for STC leaving Chemotherapy as the only treatment option.

By the by, my eGFR OF 35 is defined by NICE as ‘intermediate risk’ but it declined by 10 points in August and 29 and under is defined as ‘severe risk’.

Two issues I need to address is why I am not suitable for SCT and how treatment would fit in with dialysis ?

[graham-cParticipant]

I had another blood test today prior to a Consultation next week when I hope I’ll discover what treatment is planned, if any. Having said that I know that at least two more scans are intended which haven’t been fixed up yet.

I am caught between blood test results rapidly worsening to an alarming extent, an increasing series of scans and tests serving as obstacles to anything happening and the possibility that results will become so bad, there is no treatment option; not that I’m relishing the thought of chemotherapy, should it ever happen. I have reached this situation under Leicester Haematology’s continuous monitoring in spite of my concerns voiced at the beginning of the year. I am not amused.

[graham-cParticipant]

I have been stewing on the situation I find myself in and, though I regret having to do this, because it appears unlikely that I will receive any treatment until next year in spite of finally extracting a diagnosis of AL Amyloidosis from Leicester Haematology, I would be a fool to myself to allow this to continue without comment.

I have to condense and overlook some things that have taken place but one simple task a Haematology Department/Physician should be capable of is the interpretation of blood test results and making diagnoses based upon them.

At the beginning of this year I posed the simple question to the Consultant as to what diagnosis could be made from my then current test results. There was a blank look and silence which the nurse broke by stating “MGUS”, being my current diagnosis. I responded “Not Light Chain Deposition Disease? (effectively Amyloidosis)”. “Certainly not” I was told. My expertise lies in examining and scrutinising complex technical documents and I applied this skill to the task.

I was shocked to discover that my falling kidney function level had not been picked up in my blood test results by Leicester Haematology. Indeed under NICE protocols they had to refer me to Nephrology which I pointed out to them. Also, Amyloidosis and failing kidney function are natural bedmates. That is two fails in interpreting blood test results.

Since then I have been enrolled in a never ending series of tests and scans including bone marrow biopsy, PET scan, echo cardiogram and blood tests. The first two of which have been duplicated. Meanwhile my light chains have broken the thousand barrier (normal maximum figure being 29.6).

I have been told that I will need to undergo two more scans that haven’t been arranged yet.

This is not the full story and I dread to imagine what my latest test results will be. Another thing was mentioned to me at my last Consultation that contravened NICE protocols. Contradicting Consultants is not normally considered wise but I have encountered more roadblocks than treatment with Leicester Haematology.

I’ll mention what the latest proposed protocol breach is after discussing it with the Consultant.

[graham-cParticipant]

It’s amazing how quickly things can change.

The Consultant who confirmed my AL Amyloidosis diagnosis is brilliant in all respects, and I would rarely give such praise. He was charming and he dealt with my challenging concerns with honest and direct explanation.

So when he asked if I would want to begin Chemo – I said ‘Yes’. My most recent test results were little changed one way or the other and though I wasn’t expecting anything to happen until two further scans had taken place he thought treatment should begin now.

Beginning Chemo is rather like being picked up by a tornado. Half an hour of potential side-effect warnings, consent form, HIV/Aids and blood typing tests and I arrived at the hospital for the first all day chemo session and injections. My level of apprehension was massive, increased by the plateful of pills I was given to take. That day and the following day I must have consumed 50 tablets in all. It was as well that I took a rucksack with me to hold all the pills I took home. As it turned out I had no reaction and was fine.

I am not belittling the experiences of others. This is only the beginning and, as chemo degrades my immune system, I am sure that challenges lie at ahead. Worst of all I still have MGUS, AL Amyloidosis does not replace it.

Future weekly hospital visits for injections will be shorter now they know that I can tolerate them. The hospital was fine and I had a Walkman and book to read to while away the time between ‘obs’.

I have bought two Tupperware boxes to hold and separate the weekly and daily pills to avoid confusion.

Best of luck to all on the same path.

[Author]

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