CLL relapse and Bendamustine

[Sara2013]

Hi,

My dad has CLL and is possibly going to need more chemo in the next couple of months. The consultant said it would be Bendamustine but I've read that this drug is possibly going to be delisted in November. Please can anyone advise on an alternative if it is delisted or is it possible to get the drug privately?

Thanks for any advice.

[Oleboyredw-uk]

Hi,

Sorry to hear about your father's need for additional treatment.

There are alternatives, however, it depends on your father's situation as to what the reasons are for the consultant selecting Bendamustine.

Other possibilities include Fludarabine and Cyclaphosphamide. These normally come together along with Retuximab (referred to as FC or FCR).

Bendamustine can be administered alone or with Retuximab (referred to as B or BR).

The delisting of Bendamustine and Ibrutinib are talked about here over the last few days and the CLLSA are mounting a campaign to get this position re-evaluated. If you have time please consider writing to your MP asking for their help. A draft letter etc is available via links here.

I would try to understand more about the consultants decision for Bendamustine (BR is generally recognised as a more gentle regime than than FCR).

I'm sure that others here will be able to add more and possibly have more detail.

I hope things go well for your dad, regards, rob

[Sara2013 in reply to Oleboyredw-uk]

Thank you so much for your reply. He did have FCR the first time round he needed treatment. I will definitely be writing to our MP and the health secretary. I also need to speak with consultant and see what he says. Thanks again.