CLL Support Association
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Treanda/ Bendamustine--First treatment for CLL ?

After 4-1/2 years, it looks like I'm ready for treatment. His concern was not with the counts, but the significant and continuing enlargement of lymph nodes in the porta hepatis and surrounding the celiac axis. 10cm x 7cm in size and others. Wants to begin treatment using Treanda ( Bendamustine) twice per month on consecutive days and repeating each month for 6 months? Any comments ?

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Did your specialist say why he is not including Rituximab i.e. BR?

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Where are you located?

Bendamustine is used as a single agent, for example in Canada, where bendamustine/rituxan is not funded everywhere.

However... BR is clearly superior... but there may be reasons why rituxan can't be used.

You also had a shingles vaccination as I recall... You should be put on an antiviral for ANY treatment...

I would get a second opinion before starting bendamustine only treatment...

Here is an example bendamustine only protocol... used in the UK

nescn.nhs.uk/wp-content/upl...

~chris

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I live in Florida, USA

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I can recommend Dr Alencar at Hollywood Memorial in Broward county. Dr Lossas at University of Miami or Dr Pinnilla at Moffitt as CLL experts to you. Treanda only sounds suspect.

Jeff

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Northern Florida... go to Mayo in Jacksonville, there are a couple of CLL experts there.

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Agreed with Mayo too. My insurance isn't accepted there so I have no personal experience there.

Jeff

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I agree with the pervious answer, I would get a second opinion before I started a Treanda only treatment. I have used Rituxan plus Treanda twice. I tolerated it well. I do not have a large tumor burden, but have high WBC counts. Just the opposite of you. None of us wish we were walking this road, but since we are, always remember the more knowledge you know about this disease and treatments helps you and your doctor make decisions that are good for you. Good luck.

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Soflajoe, I did treanda, 2008 in remission since .

Best wishes to all .

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