UK CLL Forum, UKCLLFORUM

Bendamustine

Topic Made On: Dec 14, 2008 05:13pm
Swainson

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Just had a dramatic failure (haemolysis) with my first run of FCR and my consultant is talking about replacing it with Bendamustine and Retuximab – the only info I can get is from some hysterical site in the states and I wondered if anybody had any experience of the this ‘new’ (old east German) treatment combined with Retuximab?

Jim




Replied On: Dec 15, 2008 06:45pm
adef

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Hi Jim.

I am sorry to hear that FCR wasn't for you.

This American site was recommended to me by my consultant and is not too hysterical!The person writing the review is an academic chemist.Her husband had CLL.

http://www.clltopics.org/Chemo/Treanda.htm

She summarises two papersne about treating newly diagnosed CLL and one about relapsed CLL.
I guess you will need to ask your consultant whether he is thinking of you as a 'failed' treatment with FCR.
There are some interesting comments about the marketing by this company in the states.

The 2 studies she mentions where the abstracts were presented to the AMerican Society of Haematology in 2007, were updated and presented again this year.It may be that your consultant heard the presentation.

http://ash.confex.com/ash/2008/htsearch.cgi?words=bendamustine+CLL&action=search&formaction=http%3A%2F%2Fash.confex.com%2Fash%2F2008%2Fhtsearch.cgi&meetingid=1000&dir=webprogram&override=&restrict=.confex.com%2Fash%2F2008%2Fwebprogram%2F&exclude=|%2Fprogram|%2Fmeeting|%2Fsearch.html|%2Fsession|%2Fprelim&config=ash&method=and&format=builtin-long&sort=score

(if that doesn't work, go to http://ash.confex.com/ash/2008/webprogram/start.html and search for 'bendamustine' and 'CLL')

I can't find any reference that suggests bendamustine has been approved for use in this country.It was approved in the USA in MArch this year.Is your consultant going to enter you into a trial? General consensus is that this is better for patients with CLL in current state of knowledge.

It would be interesting to hear what happens.Good luck with it.

Adrian.




Replied On: Dec 17, 2008 09:59am
Swainson

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Adrian,

Thanks. The comments make more sense when read in conjunction with the ASH extracts.

I think you’re correct inasmuch as Bendamustine isn’t licensed for use in England but as it has been widely used in Germany the consultant seems fairly relaxed about it – he’s also hoping to get the drug for free so no post code lottery involved.

Thanks again for your help.

Jim.



Replied On: Dec 19, 2008 01:04pm
andysnat

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adef wrote:
........

General consensus is that this is better for patients with CLL in current state of knowledge.

..........


I would just like to insert a note of opposition to this conclusion, purely as an addition to the discussion, rather than as any condemnation.

Chaya's comments regarding the introduction of bendamustine into the US by "big pharma" are quite appropriate IMHO. It is charged to the insurance companies at approximately $9,000 per round. Teh Prof estimated that anything more than $500 would certainly be profiteering.

The other point is that the conclusion doing the rounds that Treanda is more effective than Chlorambucil is based on a US study, to provide evidence for FDA approval. It appears that the study DID NOT use an optimal dosage of chlorambucil in the relevant arm of the study. The same thing happened with Fludarabine.

I do believe however that there is a place for Treanda in the heamatologists CLL armoury, particularly in cases refractory to other treatments.



Replied On: Dec 19, 2008 10:10pm
adef

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Hi Andy.

I'm sorry that I wasn't very clear.The full quote should be:

'Is your consultant going to enter you into a trial? General consensus is that this is better for patients with CLL in current state of knowledge.'

By this I meant that being in ANY trial is thought to provide better care.Recent guidelines encourage all treatments to be as part of clinical trials where this is possible. As well as providing best care,this would ensure that we gain the maximum useful evidence about treating our condition as possible.

I did not intend to express any opinion about the value or otherwise of Bendamustine as I have no personal experience on which to base any opinion.

Best regards,

Adrian.



Replied On: Mar 28, 2009 03:56pm


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Update on Bendamustine and Rituximab

I have finished my 5th cycle of Rituximab and 4th cycle of Bendamustine (my first catastrophic cycle of FCR counted thankfully). As no one else appears to have been ‘sacrificed’ on the Bendamustine altar I thought I’d provide an update on my experiences primarily as an aid to anybody who is trying to make their mind up as to whether or not to ‘give it a go’.

The treatment regime was Bendamustine 100mg/m2 on day 1 and day 2 plus Rituximab 500mg/m2 on day 1 of a 28 day cycle. Both administered by IV as an outpatient.

The side effects I experienced were between 7 and 10 days of nausea, vomiting and lethargy. At the start of each cycle the ‘management’ was tweaked and finally the vomiting was successfully controlled through a combination of Ondansetron Melts and Dexamethasone.

By the 2nd cycle I was flat neutropenic; this was controlled by Pegfilgrastim injected subcutaneously.

I also took the normal prophylactic antiviral, antifungal and antibiotics.

I have constantly had the most awful taste in my mouth which I still have but have been told that this will eventually go – no big deal just a bad taste! I also have become unable to eat or drink certain ‘favourite’ foods and drinks e.g. the thought of bread and a cup of tea makes me feel nauseous – again I’ve been assured that this is not unusual in chemotherapy and that my normal feelings will return!

The good news is that the results have been particularly spectacular with what currently looks like a complete remission, although the consultant is going to redo the CT scan, bone marrow and blood analysis in 6 weeks to make sure.

He is also talking of introducing me on a trial of antibody maintenance if the clearance was high enough apparently my blood and bone marrow have to undergo a more extensive analysis to understand the level of ‘complete remission’ to see if I am eligible – more anon.

Hope the above is of help to someone currently trying to decide what to do.

Jim.



Replied On: Mar 31, 2009 02:07pm
Robert Cork

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wrote:
Update on Bendamustine and Rituximab
He is also talking of introducing me on a trial of antibody maintenance if the clearance was high enough apparently my blood and bone marrow have to undergo a more extensive analysis to understand the level of ‘complete remission’ to see if I am eligible – more anon.


Jim

Is that Campath that your Haematologist is referring to?

Robert



Replied On: Apr 01, 2009 09:25am
Swainson

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Robert,

At this stage he just said it would be ‘an antibody trial’. I’m not pinning too much on it yet as I have the blood and marrow hoops to jump through. My appointment is May the 8th when the results of the ‘more extensive analysis’ will be known and when, I’m assuming, a decision will be made.

I’ll post the results when I find out.

Jim.



Replied On: May 13, 2009 04:35pm
sylvie

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Jim, I was very interested to read your account of Bendamustine and Rituximab as my Haematologist has mentioned it to me just this week. I've had FC twice and Campath once so I am heavily pre-treated. I also have AIHA since early December (now stable on 5mg a day Prednisolone). I have printed off some info from clinicaltrials.gov/ct2/show/NCT00274989 entitled Bendamustine and Rituximab in Treating Patients with Relapsed CLL. I hope you will keep posting on your progress and the trial for antibody maintenance.
Sylvie



Replied On: May 13, 2009 07:44pm
Swainson

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Update on Bendamustine and Rituximab

The 8th May revealed that the MRD test (minimum residual disease) test had found no infected cells (apparently the normal microscope test looks for 1 infected cell in 1,000 whist the MRD test looks at 1 in 10,000) and the CT scan was clear. My immune system is still ‘shot-at’ and the consultant said it will probably take another 6 months to recover and as such he is continuing with the same prophylactic antibiotic, antifungal and antiviral regime that I was on during chemotherapy.

He again reiterated that I could (based on the results of a further MRD test in 6 months) be a candidate for the Campath trial which I understand has been running for 2 years and is due to finish this year.

Can I underline that I’m not trying to suggest that any of my reactions (good or bad) to Bendamustine (I think the doses of Bendamustine I received were higher than is being used in the states) and Rituximab is typical. I suppose it’s just my diary of events that may or may not help people to make they’re mind up when asked the question.
Jim.



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