Is Bendamustine better than FCR?

[andrewschorr]

Just catching up here. People may wonder if they'd be better off with Bendamustine than the old standby, FCR. Apparently not as we hear in this video from German CLL researcher Barbara Eichhorst patientpower.eu/videos/dr-b...

[PaulaS Volunteer]

I was very interested in this - thanks for posting, Andrew. However, I couldn't quite hear all that the lady was saying.. Will there be a transcript of it later?

Paula

[andrewschorr in reply to PaulaS]

I am not sure as we haven't been putting transcripts yet on PatientPower,.eu, just haven';t had the funding for it. But I will suggest that. Try listening again. You can always stop and start.

[PaulaS Volunteer in reply to andrewschorr]

Thanks Andrew. I hope it works out to get the transcripts, I had already listened to it twice, with frequent stops and starts, before I wrote the above. (I was well motivated and didn't want to give up easily). But it was partly the accent - I wish I was better at understanding people whose first language is not English.

[AussieNeil Partner Administrator]

Andrew, I've changed your title from a misleading statement to a question to better reflect the message.

I'm also interested in seeing more transcripts and note that some videos are transcribed. Is the decision to transcribe made when the video is done based on likely interest or funding provided specifically for the video at the time it is made or on subsequent interest?

Thanks,

Neil

[andrewschorr in reply to AussieNeil]

Thanks Neil. The videos with some EU docs came from a different budget and a bit leaner. Also that platform patientpower.eu, wasnt set up for transcripts. But we are changing that and integrating with the patientpower.info platform so there will be greater tools to accomplish this and much more. A work in progress, if you will. Just takes time and money :). Also, need to get to work on covering the iwCLL down under!

[PaulaS Volunteer in reply to andrewschorr]

Just wondering if someone on this site could do the transcript work as a volunteer? Maybe some folk have the time and wouldn't want to be paid?

It's not just for folk like me (with poor hearing), but those who don't have good internet access, so cannot watch videos easily.

Not wanting to sound demanding - it's because I really do appreciate the videos Andrew, and want to really take on board what's being said in them, that I bring this up.

Paula

[andrewschorr in reply to PaulaS]

No worries, all good points. I'll try to get it part of the regular process as we go forward. I believe in "continuous quality improvement."

[fieldmeadow]

I found this video very reassuring simply because I chose to have FCR over B+R which resulted in my MRD negative status. However, those who go down other routes other than FCR should not be discouraged as other combinations may work better for them. Also, there are very promising non-chemo drugs being offered that are proving to work well. I'm sure we are well aware by now of the pros and cons of FCR - just wanted to reassure those for whom FCR is not appropriate.

[Kam73]

Having my husband 4 treatments done and 2 to go with BR this is not encouraging news.

[PaulaS Volunteer in reply to Kam73]

Hi Kam73,

I don't think you need to be discouraged by this. It is still a debatable point amongst doctors, about the pros and cons of BR compared to FCR, and even expert doctors have different opinions. Some patients cannot tolerate FCR so well, so are better off having BR.

How is your husband doing, with the BR treatments?

Best wishes

Paula

[Kam73 in reply to PaulaS]

He is handling it pretty well. One week after treatment he feels like he has a hangover. He is not a dreamer but the first week after treatment he has a terrible time with nightmares! He is beginning to have a bit of "chemo fog" and is a little in denial about that. I do have to say this has been a very stressful time in our marriage. Thank goodness we have a strong marriage! My own health problems just add to the stress.

[PaulaS Volunteer in reply to Kam73]

It's good to know he's handling it reasonably well, Kam. Sorry about the brain fog and nightmares though. I know how horrifying nightmares can be. I wonder if other folk have experienced nightmares with BR, or any other treatments?

I presume he has told his doctors about this? It's just possible it might be due to some other medication he's on (which could be changed) and not the Bendamustine or Rituxan. I once took Chloroquine for malaria, and it gave me terrible nightmares - worst I've even known.

Thanks for being honest about the stress that things like this bring into our relationships - especially our closest relationships.. I'm sure a lot of us can relate to that. Illnesses and medications can make us behave like different people to what we usually are... You mention having health problems of your own, which of course adds to the pressure on you both. No easy answers...

I must try and end on a more positive note... At least he's over half way through treatment now... As you say, four down and only two left to go...

Wishing you both all the best, for the future,

Paula

[emmiekay]

Getting ready to start BR this week. Doc said it would be easier on me than FCR.

[Cllcanada Top Poster CURE Hero in reply to emmiekay]

bendamustine/rituxan [BR] is basically a lighter version of FCR... it has a milder purine analog component the F... the C is similar and the R are the same...

~chris