I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the treatment I have had, I have never had this one, so I am wondering if you could share what your experiences were.
Thanks much.
Further to the Related Posts, there are over 400 posts mentioning bendamustine. healthunlocked.com/cllsuppo...
That's because it's an older, well studied treatment with decades of experience behind it. The international CLL10* trial managed by the German Study Group showed it to be a gentler treatment for CLL than FCR and hence it was recommended for 65+ year olds back before the newer targeted therapies became available.
* Phase III trial of combined immunochemotherapy with Fludarabine, Cyclophosphamide and Rituximab (FCR) versus Bendamustine and Rituximab (BR) in patients with previously untreated chronic lymphocytic leukaemia
Neil
Hi Kevin, I had R&B 4 years ago now and the outcome has been very good I have been in remission now for over 4 years. There are side affects with R&B. It wipes out your immune system, so be very careful around infections. I ended up admitted to hospital twice with severe infections. Also suffered with a red rash at times, sickness after treatment, also poor bowel movements and my skin became very sensitive too. The best of luck, I consider it worth the problems in the end as I'm able to lead a quite normal life these days, Covid permitting of course.
I started B&R treatment 19 months ago after being on W&W for only 7 months. I think we use B&R is because I was 79 and Have an mechanical Aortic valve. During my 6 months of treatment it wiped out my immune system, went to emergency twice and had Shingles. I also had night sweats, poor bowel movement and put on as much as 8 pounds after each treatment(the weight went of within a matter of days). The good news is I am now in remission for over a year and I am now on a maintenance program of Rituximab every 3 months. My blood work is all in the normal range and I feel great.
Hi kevin, I have never had Bendamustine, but I have rituxan treatments once a month. They last a little longer than the gazyva, at least 4 hours. Sometimes a little longer. My first treatment had to be stopped temporarily because I had a slight allergic reaction in the form of skin hives. But I was given benedryl and they went right away, and the treatment resumed. I have no side affects that I can see. I still go to work the following day. The one good thing I have noticed is my arthritis seems to be better after the treatment. 
Not sure if it is related.
Hi Kevin, I was very reluctant when I had to do chemo after only 2 years on W&W (for CLL/SLL). I chose BR after learning about ist at a LRF Conference whee I had the chance to talk to a lot of people. Everyone is different, but I have to say: it was the best choice at the time, and 8years later, I would still make the same choice: I had hardly any side effects and a couple of really good years without them need for any medication or treatments. A neighbor with the same diagnosis went for FCR - he suffered from the side effects for quite some time. - Again, everyone reacts differently, but it was the perfect choice for me at the time! Wishing you all the best with whatever choice you’re making!
Husband had only one round of B&R and it caused extreme neutropenia and anemia requiring blood transfusions but zapped the CLL enough to allow an aortic valve replacement surgery a month later. He was 79 at the time so I don't see it as a gentler drug for someone of that age while Gazyva is much more tolerable with little to no downside but each case is unique. '
I've written about this a few times, but this is a summary:
Had BR in 2012 after only 5 months of W&W... first round, had neutropenia and an infection - ended up in A&E for 9 days. No neutropenia on the following 3 rounds, but had an allergic reaction to the rituximab one time, so needed an adrenalin shot.
Also, after the first round, had a bad skin rash - the consultant offered me to stop, but I'd started so thought I'd finish... needed a lot of skin cream, and the skin issue lasted for years, but got better gradually and has more or less disappeared by now.
After all that, I am 9 years into remission, and would gladly do it again for the same result - but we're all different, and the outcome isn't guaranteed.
It worked for me - that's all I can say... just be super careful about infections/neutropenia, and gor immediately to A&E if you are feeling 'off', or a fever coming on.
Kevin, I recently completed six months of Bendamustine/Rituximab, only major side effect was constipation and some fatigue. I still have minimal residual disease in bone marrow, but had very good results.
Kevin, I went through B+R just about 3 years ago. I was diagnosed in May and began treatment in September. I did all 6 rounds, the final one was the only one delayed due to extremely low counts. But I finished the regime with no real issues. Had constipation issues but that was about it. I was working full time and never missed a day. I found it to be reasonably easy and tolerated it well...when they cut back the steroids after the first infusion life got better real quick.
Please remember everyone is different. How you react is going to be specific to you. I did NOT get remission. Came close but no cigar. Everything is currently the same as when I completed B+R. No new node growth. It can stay this way forever or it can rear it's ugly head and I will have to have treatment again. It's a crap shoot but I am hoping CLL/SLL takes a chill pill and remains stable.
Hi Kevin. I had 4 rounds of B+R around 2017, i posted my story on this forum please feel free to browse. Hope it is of help.
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