my haematologist has suggested that they may split my treatment, anyone got thoughts/knowledge?

i.e. by giving me Fludarabine and Cyclophosphamide to reduce my leucocyte count before putting me on the Rituximab to reduce the possibility of a reaction to the Rituximab. Is this a recent consideration? This is a possibility that will be discussed by the clinical team and I'll find out on Thursday when my treatment commences.

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  • I had FR, fludarabine and rituxan... first round was split, fludarabine only... primarily due to my high lymphocyte count and the possibility of tumour lysis syndrome... I thus avoided having to have allopurinol, which can be a bit of a problem in a few patients.

    I then had 6 rounds of combined FR treatment...

    So splitting treatment may be due to kidney function and the possibility of uric acid buildup... perhaps enlarged nodes, spleen etc...

    When I had RCHOP, it was the full monty for 6 cycles... ;-)

  • It sounds like a good idea. They did not split my treatment up, and I had a large reaktion. I would have prefered it done like your doc suggested.

    -Trine

  • Just finished FCR and yes, they did avoid Rituxin with the first round. They killed of as many leukocytes as possible before administering the Rituxin. This kept TLS under control and was a much safer approach. It is definitely safer for preserving kidney function and works very well when your tumor load is huge as was the case here. First round was done in hospital so that careful monitoring was constant. TLS commenced under the watchful eye of CLL expert and was handled in a very safe manner.

  • I had very high lymphocyte count (ALC 300k) bulky nodes and 92% marrow infiltration at the time of my first TX with Fludara & Rituxan. I had FR in what is referred to as "Concurrent vs Sequential" protocol. I never had more than hiccups, some constipation and bloating from 2000ml of saline hydration. furthermore, my CLL expert Dr. John Byrd of OSU in US wrote a paper on his study with FR concurrent use, claiming a 19% improvement of Concurrent use over Sequential, the use your doctor is suggesting. Sound good?? Context is everything - Dr. Byrd has extensive experience in allowing certain patients to W&W with very high tumor burdens. My kidneys were impaired at the time of this treatment from an autoimmune complication from the CLL itself so I was more vulnerable than many. One thing stuck in my memory from that time was his telling me that TLS (tumor lysis syndrome) can occur with ALC <50k so it is not just a threat from higher tumor loads in nodes or ALC >100k. Because of the day long drive to get to his clinic I had prearranged an agreement to have the 2nd cycle done at a very highly respected hospital in Rochester NY with my more local Heme/Onc who also happened to be a HSCT (Hematopoietic Stem Cell Transplant) specialist. I felt reassured- I wanted a better quality remission if I got a chemo based TX. I sailed through the first cycle with Dr. Byrd and everyone was thrilled with my response and lack of complications. My NY Heme/Onc, who had agreed to follow Byrd's protocol but failed to listen to my warning her about my increasingly fragile kidney function which was getting worse but not due to TLS, administered an inappropriate amount of Fludarabine sending me into a life threatening renal crisis, permanently damaging my kidneys due to ATN (Acute Tubular Necrosis).

    Reflecting on my experience as to anyone elses situation, my advice is to consider the following questions and what is known about using FCR or FR. Rituxan provides a great improvement over FC use alone due to a synergy that is not completely understood by even the best CLL experts. The positive synergy in delivering a deeper and therefore a hopefully more durable remission is enhanced by using it concurrently with F or FC but it can be more difficult to manage PARTICULARLY by a NON CLL experienced Oncologist who is not dealing with CLL on a daily basis. My NY Heme/Onc wanted to give me F first to reduce overall tumor burden before giving Rituxan but the trade off is the "brass ring" goal of the deepest most durable remission from a toxic chemo based regimen on the first round of cycles. Your first remission is your best and succeeding treatment usually means more resistant disease and shorter times between therapies that will in turn degrade ones immune system. So your dilemma is; do you go for a safer ride with chemo given first to reduce tumor before receiving Rituxan getting less bang for the buck or go for the brass ring of maximizing remission depth and durability accepting the immediate threat of getting through possible TLS and more dramatic Rituxan reactions? I think I would have been in good shape if I had gone for the second cycle at Dr. Byrd's Clinic rather than switching horses after cycle 1. The confidence of your Dr. coupled with his/her CLL experience and whether you could manage a "CLL vacation" to a CLL expert to use a concurrent protocol if a local CLL experience Doc were not available, would be the prime factors to consider.

    Hope this does more than muddy the waters and may your path be well chosen!

    WWW

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