5 vs 6 rounds of FCR

Shortly after my 5th treatment I became sick. Despite 4 rounds of antibiotics I could not shake it and my last treatment was delayed until I was well. Unfortunately I ended up in the hospital with  pneumonia where I am now. It has now been 7 weeks since my last treatment. My recent PET/CT scan shows all nodes and spleen have reduced and there is no sign of  disease.

Here is my question. If there is no sign left is there a benefit to having the last treatment? By doing so will I keep CLL at bay longer. Or am I at greater risk of getting sick from the last chemo treatment and risking more serious infection. I have tried finding scientific research to show 6 treatments makes a difference but am coming up short.

Can someone direct me data or share your experience?

I am 44 with a daughter who just finished her freshmen year of college and I want to keep this a bat as long as possible.  FYI I am 11q, unmuted, ATM 

Thanks!

7 Replies

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  • Hi Manance

    Thanks for your answer to my earlier post.Concentrate on getting  better and then listen to what your specialist advises. Many have remissions after only 4 treatments of FCR. 

    Take care.

    Sue

  • The best test on depth of remission is an MRD flow cytometry on the blood. This will tell the number of malignant cells remaining.  The best remission is called MRD negative, and is 1 CLL cell in 10,000 leukocytes...

    The blood MRD is not as good as the bone marrow varient, but they can't do the BMB test until atleast 3 months after the last infusion of rituxan... because it is still on the job...

    There are papers on dose reductions of FCR, but no studies I have seen on the long term effects of reduced treatment rounds...

    Hope you have the pneumonia on the run... 

    ~chris

  • I had 4 rounds of FCR when I was 41 yrs. I had a delay before the 5th round due to sickness and in the meantime a MRD test was done on the blood (not sure why). It came back negative and further cycles were held off until 3 months later when I had a BMT which also came back MRD negative, so I had no further FCR. My last cycle was March 2010. I am classed as in partial remission because of node in my torso not reducing by (or to) a specific size. Things are still looking positive as my wbc and lymphocytes are still well within the normal range. My only concern is that over the last 18 months or so my platelets dropped gradually to 96 and if it had dropped any more further investigation (BMT) would be required. Platelets increased on my last visit to 112, so hopefully things are on their way to normal. Only other issue is the number of colds and minor infections but that seems to go with the territory with cll. 

    Hope it all works out. I just took the advice of the Drs.

  •  My story of FCR where almost identical- got five rounds of FCR, got very sick and went to the hospital for several weeks. 

    Was so afraid to get my sixth round. Doc told me that there where no evidence that six rounds where more efficient then five. So I sad "no than you" 😊

    Went into complete remission after those five rounds and has been since. And that was in 2012.

    Btw I am now 42 

  • Personally I'd ask "What is the expected benefit of this last round,please?"

    If its not obvious then I'd suggest that you hold off.

    I did 5 rounds, was told I was slightly anaemic but should continue. After round 6 I was given an appointment to return in 3 months. In the interim I was so anaemic that I collapsed and spent 16 days of my foreign holiday in hospital, and received at least 10 pints of blood. Two years later and I am still on monthly IVIG treatment, as well as PCP preventive treatments as I catch lung germs very easily now.

  • Thank you all for your replies and sharing your stories!

  • I had 4 then couldnt take anymore! There is no reason to carry on if the results are good. Also a lot of new cancer treatments will soon be available that are less toxic.

    Ask your team what they think.

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