Home > CLL > Treatment Begins (Part 2)

Treatment Begins (Part 2)

EDIT – November 2007 – I have discovered a factual mistake in this entry. Instead of “twelve months” later in this piece, please read “for the rest of my life.”  –  Thank you.

Oral FC (Fludarabine and Cyclophosphamide) was my treatment of choice, having done a little research into the options available, and those unavailable. In the UK, Chlorambucil remains the NICE (National Institute for Clinical Excellence) treatment of choice, and the most common firstline treatment in the NHS. The recent UK CLL4 clinical trial indicates that FC shows great promise, and the possibility of good “remissions.” I was offered Chlorambucil. The firstline drug that most of the world uses nowadays is single Fludarabine, which NICE turned down as a firstline treatment earlier this year.

Dr. Strangelove gave me some strict instructions to follow when taking the tablets, the first of which was to drink at least three litres of liquid per day during the five chemo days of the cycle – in conjunction with the allupurinol tablets he gave me to begin a couple of days before I started the chemo itself. The allupurinol helps kidney function, as does the high level of liquid. The chemo destroys all the extra lymphocytes rushing around in the bloodstream, hiding in the lymph nodes, bone marrow and spleen. My lymphocyte count at the start of treatment was more than thirty times normal. All the waste products from the dead lymphocytes exit via the kidneys, and the extra liquids help flush the kidneys. (Strangelove said that ‘gout’ was the issue, but I think the main concern is Tumour Lysis Syndrome – Google it.)

Six Cyclophosphamide tabs at breakfast time, five Fludarabine at lunchtime, some anti nausea tabs through the day, for five days, three weeks off, repeat five more times. Plus prophylactic antibiotics for the next twelve months. That is it – my chemo – all done at home – carry on as normal.

All the instructions, all the dire warnings about fevers colds and other warning symptoms, the supermarket carrier bag of drugs, were all given to me by Nurse Esmeralda, (black hair, widows peak, white skin and extended canine teeth,) along with a card to go in my wallet for the next twelve months wherever I go. It says, in great big white letters on a red background –

THIS PATIENT IS AT RISK FROM TRANSFUSION-ASSOCIATED-GRAFT-VERSUS-HOST DISEASE
If this patient needs to have a blood transfusion, cellular blood components (red cells and platelets) must be GAMMA-IRRADIATED

I have had a special pocket stitched into my pajamas for my wallet.

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Categories: CLL
  1. Grateful
    November 14, 2007 at 12:27 pm

    Interesting….oral FC is not an option here in the USA, but by your experience maybe it should be.

  2. Andysnat
    November 14, 2007 at 7:39 pm

    Grateful,

    As I already said on the CLL forum, I think that Oral FC is too cheap for the American system

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