Does anyone have info about fr (fludarabine an... - CLL Support
Does anyone have info about fr (fludarabine and ritux) as frontline treatment?
I was treated with Fludarabine, cyclophosphamide and retuximab july-dec 2012, if that qualifies, if so what information are you looking for? I can answer questions about my experience. Others may be better qualifies to answer other questions, however more guidance on what you are interested in would help.
Rob
Hi...I had 6 rounds of fludarabine and rituxan FR a year ago, would be glad to answer any questions... FCR is not the same treatment... and everyone will have different experiences.
Here is a long term study on this FR treatment: ncbi.nlm.nih.gov/pmc/articl...
Was the fr first treatment? We're looking into options, including fcr. Thanks!
Yes FR was my first treatment, in retrospect, for me FCR would have been a better choice...I only achieved a partial remission on FR and became fludarabine refractory...
You might consider bendamustine with or without rituxan as well, we just helped to get it approved in Canada for first line CLL.
We were given b+r as the alternative option to f cr, with no real guidance as to outcome data
There is one trial comparing BR vs FCR, which recently closed and is collecting data in Germany, but there is no published results yet. Any other form of comparisons is a bit difficult, too many different parameters.
Yes, that data should help down the road; also, I read that the mutation SF3B1 causes (contributes?) to fludarabine resistance, so I need to look through the labs to see if we have that info
SF3B1 is an acquired marker and there are no commercial tests for it yet. You might get tested at a research center doing whole genome sequencing, Sanger etc...but I doubt it... nejm.org/doi/full/10.1056/N...
So now you know (the hard way) that fludarabine "is not for you....what a way to learn! Chaya's analysis of br vs f c made us leery of br, & since I'm wary of the "hit with the strongest cocktail" school, we're kind of stuck for the moment, w/time running out.
Please be careful of cross clinical trial comparisons. Bendamustine is considered by some to be less myleotoxic than FCR...here is Dr Rummel on patient power video addressing this last year at our CLL conference. patientpower.info/video/ben...
You need to have a good talk with your doctor and if answers aren't forthcoming then seek a second opinion...
SF3B1 testing appears to be available...we're on the neogenomics site...no idea the cost....
Might be worth pursuing... I don't know... the late Dr. Terry Hamblin has a fairly extensive post on this gene and fludarabine refractory CLL... Link here... mutated-unmuated.blogspot.c...
Also Dr. Sharman has written on these new subclonal markers...
I was a card carrying W&Wer and did not want to do chemo so settled on FR as a first treatment which reduced the chemo. My strategy was to bet on better treatments down the road so accepted the prospect of a less durable remission than I might get from FCR. For me, alkylating agents presented a heightened risk of bladder cancer which was the only cancer in my immediate family. Given my profile as a monoallelic 13q del. patient and highly mutated at 6+% and being CD38 neg to boot, I had a good argument for a 4yr remission from FR. Enter "Murphy's Law" which brought severe kidney damage from a rare reaction to Fludarabine and later to Rituximab.
That said, I actually got a great response in reducing my bulky nodes and a 300K ALC (Absolute Lymphocyte Count) to near normal levels after only 2 cycles, which was all I could have after nearly dying. The reaction was not TLS (Tumor Lysis Syndrome) and relapse followed fairly fast.
My rare case is a poignant reminder of how different we all are and the crying need to have better detailed tests to match the best treatment to each patient. There are newly discovered markers that indicate chemo based treatment will not be effective but getting them is another matter.
Choosing treatment is still a crap shoot but the odds are improving.
WWW
If considering FR for frontline treatment be aware that there are two ways of administration. Concurrent and sequential. Dr. Byrd of OSU has reported a 19% efficacy advantage with Concurrent vs sequential administration. Many clinics will reduce tumor load with Fludarabine first and then kick in with Rituximab. The thinking with Concurrent use is that synergy between the two drugs is necessary and operative at the start of therapy. Some resistance may develop in some patients with sequential use.
WWW
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