Tests to judge if need more FCR

Hi. Thank you for setting up this site; I am sure it will be a great help to us all. I have had CLL for a number of years, on reflection probably 7 years at least. I started FCR in August and have had 3 monthly sessions to date. I have an appoint beginning of December to ascertain if more FCR sessions are Needed. What I need to know is "what tests should be done to establish if I need more FCR treatment?" " what questions should I ask.?" Thank you for your help.

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  • Hi Jupiter, so far as I'm aware (I'm not a medic), the ideal is to give 6 cycles of FCR to optimise the results from treatment. However the treatment can be quite toxic for some and a lot depends on how a patient reacts and whether continuing to the full 6 cycles is in their best interests. This, from the British standards on the management of CLL (the bits in square brackets are mine):

    "Recent data from the German CLL8 trial showed an improvement in the depth of remission between cycles 3 and 6, and that achieving an MRD [minimal residual disease] negative remission is an independent marker for improved OS [overall survivability] as well as PFS [progression free survival] (Bottcher et al, 2012). These data provide a clear rationale for the use of the most effective available initial treatment and for completing six cycles of treatment providing toxicity is acceptable."

    I think I would want to ask "what reasons are there for NOT having the full 6 cycles? What tests have been done to arrive at this conclusion (if that's the case)? What do the results of the tests mean for me?"

    Don't hesitate to post again if further clarification would be helpful.

  • Hi Jupiter,

    Our experiences have been very similar. I was diagnosed 6 years ago and started FCR in August on the Arctic trial. I was in 'remission' after cycle one in that all readings in blood analsis were normal and this has been the case since. This led me to ask the question why continue? I have been advised that the depth of remission should be greater if I complete six as long I am coping with the toxicity so am happy to continue and to put up with the side effects! Two to go, December and January!

    I am looking forward to February!

    Best wishes

  • Hi, I had six months of FRC + M on Admire trial at Barts Hospital.As my blood counts were so low cycle 5 & 6 were at 75%. Its a toxic mix I was very ill with sickness and was admitted because of it. However, after it finished March 2010 I have not had any sign of the disease. It has taken a long time to get my strength back and the chemo has left some lasting effects (painful feet still low blood counts and so on) there is for some a price to pay for chemo but without it I may not be here.There are so many blood tests and CT scans and visits to the hospital but they do know what they are doing so hang on in there. Good luck.

  • The absolute lymphocyte count (ALC) will indicate the effectiveness of treatment. If it is in the normal range then it is up to the experience of the doctor. Most will give one more round in this situation.

    The best test is called MRD negativity, as mentioned before, , which can find one CLL cell in 10,000 B lymphocytes. this is the absolute best result, however it is hard to achieve.

    MRD can be done on peripheral blood, 3 months after treatment with a Rituxan containing treatment, or immediately after treatment if performed on a bone marrow sample.

    This test tend to be used in major CLL centers only, but its use is increasing...

    ~chris

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