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

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Treanda/ Bendamustine--First treatment for CLL ?

Soflajoe profile image
8 Replies

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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Soflajoe profile image
Soflajoe
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8 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

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

Cllcanada profile image
CllcanadaTop Poster CURE Hero

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

Soflajoe profile image
Soflajoe in reply toCllcanada

I live in Florida, USA

Justasheet1 profile image
Justasheet1 in reply toSoflajoe

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

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toJustasheet1

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

Justasheet1 profile image
Justasheet1 in reply toCllcanada

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

Jeff

Janetfld profile image
Janetfld

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.

ballyhoo profile image
ballyhoo

Soflajoe, I did treanda, 2008 in remission since .

Best wishes to all .

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