UK CLL Forum, UKCLLFORUM

Bendamustine/Ritux

Topic Made On: Oct 25, 2011 11:59am
Ghunter56

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Hi there; I'm undergoing chemo for CLL with Bendamustine and Ritxamab; I have a couple more cycles to go. The treatment has been quite rough and I've had to have a picc line inserted as my veins have given up. I've been quite nauseous. Has anyone else out there had this combo of drugs? Any ideas about length of remission etc? Thanks very much. Gary




Replied On: Oct 26, 2011 09:49am
Robert Cork

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Gary

You do not mention if you have been previously treated or not, as these days there is some granularity that can be deemed from research reports. However, there have been a few reports on Bendamustine and Rituxan, one for relapsed patients and one for first line.

Bendamustine Combined with Rituximab (BR) in First-Line Therapy of Advanced CLL: A Multicenter Phase II Trial of the German CLL Study Group (GCLLSG) - After 18 mo 75.8% of the pts were still in remission, median PFS has not been reached. Bendamustine was given at a dose of 90 mg/m per day, combined with 375 mg/m rituximab for the first cycle and 500 mg/m for subsequent cycles.

Bendamustine with or without Rituximab in the treatment of relapsed chronic lymphocytic leukaemia: an Italian retrospective study. Bendamustine 100 mg/m per day and Rituxan 375 mg/m. The overall response rate was 69.6% (complete response 28.6%; partial response 41%), and was significantly higher in patients treated with R-B and in those responsive to the previous treatment. After a median follow-up of 7.9 months (range 1-148), the median progression-free survival was 16 months and the median duration of response was 13 months. Median overall survival (OS) was 16.8 months for the whole cohort.

Regards

Robert



Replied On: Oct 26, 2011 11:17am
Pauline007

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Hi Gary, My partner finished his Bendamustine/Ritamab treatment a few months ago. He found it really hard going for the first few months, but then it seemed to get a bit better. For the last few, it really didn't affect him much, apart from tiredness which is normal I suppose. He did talk to the consultant about the nausea and was given additional drugs which did work (they stopped the nausea completely). We're off to see Prof Hillmen in Leeds in a few weeks for a catch up. He's had a CT scan and bone marrow, and they've said he had an excellent response. He's deemed to be in partial remission, just because his spleen is still enlarged, but we've been told that may never reduce any further in size. His blood counts are totally normal now. He's in great form, just painted the outside of the house and done lots of other jobs - so keep your pecker up, from our experience, it does get much better.



Replied On: Oct 27, 2011 01:48pm
Zeno

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I am currently doing Rituxamab, Bendamustine and Mitoxantrone having relapsed from the E-SHAPR earlier this year. The treatment is two days every four weeks with now six treatments. The first three treatments have dispersed the physical lymph nodes and reduced the internal ones according to a recent CT Scan. The side effects for me have been tiredness and nausea but I am working at my hospital normally apart from one day to recover. I am one of four patients on this course. Two have stopped because of the effects. Not sure about the third and I am the fourth.

Post treatment is G-CSF to control the neutrophil count which droped to 1.1. This is my tenth year with CLL.

Agreed that this forum is very useful and helpful, sometimes too technical, but something for everyone!



Replied On: Feb 28, 2012 02:16pm
Robert Cork

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I would like to hear from anyone, in the UK, that has received Bendamustine + or - Rituxan.

I would like know the treatment plan adopted and if this was received on the NHS. If on the NHS was funding obtained from the PCT.

Regards

Robert



Replied On: Feb 28, 2012 05:39pm
Zeno

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Robert, I have eight treatments of both along with Mitoxatrone last year. Yes, this was on the NHS. Interesting question you ask about PCT. As far as I am aware, these funding allowances are allowed for within the PCT budget. Having said that, I believe that the University research department concerned may have some influence on funding. I am told that including the administration that the cost was about 8 - 9k per session



Replied On: Feb 29, 2012 10:53pm
Eileen

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Hi Everyone sorry long time no posting family matters and last years FCR kept me busy.
The white cells are rising quickly again and the consultant is recommending Bendamustine. Will find out more on the 20th March. Was surprised at how expensive it is.
Hope everyone is well.Take Care.




Replied On: Mar 01, 2012 09:37am
Chonette

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There is a special cancer drug fund that hospitals can apply for treating patients that they think would benefit from that treatment even if the drugs are not approved by NICE for that condition. It is worth asking your hospital team if they use the fund, it is always worth to volunteer to be a User Representative on the Cancer Networks to learn more about such things and also to have some patient influence on how things are done.



Replied On: Mar 02, 2012 10:42pm
Nick

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sources of information.

The two Macmillan links below take you to information about how the fund is coordinated on a regional basis by Strategic Health Authorities (SHAs). SHAs manage the NHS on behalf of the government in England. Each SHA has a panel of cancer experts to make funding decisions on its behalf. , the Macmillan info also provides links to The Rarer Cancers Foundation which has fact sheets on its website that explain how the fund works in different SHAs. It also has information on the devolved NHS sytems.

http://www.macmillan.org.uk/GetInvolved/Campaigns/Unlockthedrugfund/Thecancerdrugsfund.aspx

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Gettingtreatment/Accesstotreatment/TheCancerDrugsFund.aspx

"The Cancer Drugs Fund is a special fund created by the government to help improve access to cancer drugs for people living in England. The governments of Scotland, Wales and Northern Ireland decide separately how they spend their money on health. So far, they havent decided to set up similar funds."

Also you can visit The Cancer research pages:

http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/cancer-drugs-fund

Or read from the department of health; Guidance to support operation of the Cancer Drugs Fund in 2011-12

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_125449.pdf



Replied On: Mar 23, 2012 10:43am
Heather

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I have just had my first cycle of Bendamustine/Rituximab and the nausea has been pretty bad. Does anyone know if this gets better as time goes on.



Replied On: Mar 24, 2012 08:31am
Zeno

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I had eight months of this along with Mitaxontrone last year. For me the nausea lasted about two to three days after each session but controlled with the prescription given. In your case, if it is severe, it might take a little longer. However, in any case, tell you consultant so that he can ensure that the right nausea pills are given.



Replied On: Mar 24, 2012 10:42am
Swainson

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Hi Heather,
I had one of the first treatment s of Bendamusitne and Retuximab after a dramatic failure with FCR in 2008.
The first thing that has to be said is we all have different side effects with any drug and Bendamustine is no exception.
I personally had fairly bad nausea and vomiting for about 4 months until they got on top of the anti-sickness drugs so I agree with Zeno get the best anti-sickness drugs you can get (a mixture of anti-sickness drugs combined with steroids did the trick for me) and take them! Having said all that, I have read of people on this site who have had the same regime and have had no side effects at all.
Did it get easier for me? Well the truth is not really. Was it worth the pain? Absolutely here I am 3 years on and the only trace of cancer is at MRD level!
So Heather stick with it, the ride might be a bit tough but the prize at the end makes it worthwhile.
Jim.



Replied On: Mar 26, 2012 08:35am
Heather

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Thanks Jim & Zeno. Its now 10 days since my chemo and I am feeling much better. Still no appetite but the nausea is under controll now. So glad to hear that you are well. I had FCR 2 years ago which achieved a good remission but unfortunatly it wasn't very long lived so am hopeful for a good result this time. Heather



Replied On: Mar 26, 2012 02:48pm
Robert Cork

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Eileen wrote:
Hi Everyone sorry long time no posting family matters and last years FCR kept me busy.
The white cells are rising quickly again and the consultant is recommending Bendamustine. Will find out more on the 20th March. Was surprised at how expensive it is.
Hope everyone is well.Take Care.



Eileen

How did your consultation go?

Robert



Replied On: Mar 27, 2012 01:24pm
Eileen

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Hi Robert and all. The consultation showed WBC 210 platelets 48 and Hb 9 so starting Bendamustine next Wednesday. Thanks for asking how are you?

Any advice woud be gratefully appreciated. Take Care All. Eileen.



Replied On: Aug 27, 2012 10:51am
David13

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Hi all -

Thought I'd share my experience so far of Rituximab + Bendamustine on this forum.

I was diagnosed in Oct. 2011 with CLL, and by Easter 2012 it was clear that I needed treatment, as the CLL was progressing.

My consultant recommended the BR treatment, which he said was 'less aggressive' than the more common FCR - so (apparently) fewer side effects and less chance of infection in his opinion (he seems to know his stuff).

The treatment was on the NHS (in Wales).

You probably want to know about side effects, so I'll deal with those first - I have so far had 3 cycles (recently had the third):

Infusion - on the first cycle, I started to have the shakes ('chills') after 2h or so of rituximab. The nurses immediately brought an 'antidote' (not sure what) and after the injection I was OK again in 10-15 min. This is probably common as the 'stuff' was ready to hand! I did not have any reaction in the second or third cycle - apparently, it's more common the first time.

Side effects from Bendamustine: The main one I've had is to the skin - areas becoming reddened, skin dry, a rash and small pimples here and there, scalp v dry and a bit scabby, thighs blotchy and knees purplish etc. TBH this has not been too much of a problem - not very itchy (I can resist the temptation to scratch). The skin can get Violationly when I become hot. The worst areas are the sweatier ones, and after the first cycle there were a couple of days when the rash was so bad behind the knees that it was a bit painful to walk - but that's been the worst of it. Treatment has been with E45 cream and Piriton.

My mouth has also been dry after each cycle, though this didn't last long except for the first cycle (but see below).

I have been tired in the 2 weeks or so after treatment - heavy legs, not much energy - but after the second cycle, managed to have a longer break with a holiday in France - and felt better after 3 weeks than I have done for a couple of years - able to start cycling again, riding up to 15m, so pretty good. Am currently in the 'tired' phase after the third cycle.

Unlike some of you, I've hardly had any nausea, and have not taken the medicine supplied for that. I have just felt a bit 'off' for a few days after treatment.

This is probably not a typical experience, so I've left it till last. The main problem I had was not related to the treatment as such, but on the first cycle I was carrying an infection, and 3h after leaving the treatment room I was back in A&E with a high temperature, which stayed around 39deg C for 3-4 days at least - this cost me 9 days in hospital, mainly in isolation. Treatment was with intravenous broad spectrum antibiotics (they never identified the 'bug') and (I think) steroids. Paracetamol also intravenous at the start.

This period coincided with a very bad dry throat - I had to sip water every 1-2h for many days, which made sleeping difficult. I also had very loose bowels - they were already bad before the treatment, and were even worse while I was ill. I was given a great deal of saline solution (to the point where I retained some water and my ankles swelled a bit), and so I'd also be going for a wee very often indeed. (I was also on allopurinol.)

So - overall I'd say the treatment seems to be working. My swollen glands in the neck and under the armpits have disappeared - this happened very quickly after the first cycle. I have felt really well between the second and third cycles, and hope for the same effect in the next week or so between the third and fourth. It's far too soon to tell what sort of remission I may have, but in my case the bearable side effects make me feel that the treatment has been well worth it.




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