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My condition and treatment

My main organs that are affected are my kidneys and my heart. I am having monthly check ups at my local hospital and whilst there I also send off bloods to London for both AA and AL analysis (as my tests showed evidence of both). The idea of the chemo is to suppress the plasma cells (I have 5%) to stop the production of the extra lambda serum free light chains.

If we use the analogy of a sink to explain this in simple terms - my sink is being filled with these light chains (amyloid deposits) faster than my body can remove them (plug hole). The treatment will reduce this production until my body can remove the amyloid deposits down the plughole faster than they are filling up the sink.

My treatment is also being jointly managed by the National Amyloid Centre in Hampstead Heath where I go every 6months for a check up.  So far I’ve visited twice - April 08 and recently in Oct.  My total body load of amyloid deposits had increased from the baseline taken in April but that was to be expected as my chemo treatment never started until June.  This would then take another three months to get a significant reduction in the SFLC production and thus reducing the deposits in my blood.

The CTD I am taking is:

Cyclophosphamide 500mg, Thalidomiide 150mg, and Dexamethasone 20mg. I also take anti acid, infection tablets as well.

The amyloid deposits in my kidneys effects their filtration and as a result I’m losing a lot of protein in my urine (9 grams over 24 hours). The deposits around my heart is classed as NYHA class 2 heart failure - this basically means my heart wall is slightly thickened and the symptom is breathlessness.

The idea of the treatment is to save these organs and me!.

As my blood is not balanced at the moment due to the protein loss I’m also taking anti cholesterol tablets (simvastatin), anti protein loss tablets (ramipril) and blood thining tablets (warfarin). The other symptom is water retention for which I’m taking furosemide tablets. I take as few or many as I need depending on levels of retention. This leads to loss of vital nutrients so I’m taking potassium tablets and magnesium tablets to counter this.

Filed under: Case History on November 5th, 2008

One Response to “My condition and treatment”

  1. Mandi, on November 6th, 2008 at 7:50 pm Said:

    Hi Matey,

    Good idea I know you get sick of repeating yourself, nice web-site from Vinny too! Hope you won’t stop be talking to Pen though ! Its good to talk too you know xxxx

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