Bendamustine with rituximab

[gohmei]

my husband was diagnosed with CLL and will be starting on the above agents over the next 6 months. Anyone has experienced the same treatment before?

[RobertCLL]

Yes I have received 6 months of Bendamustine with rituximab. The treatment was easy to administer and provided a remission of about 4 years. I also had no side effects to the treatment. For me it was a good treatment.

[gohmei in reply to RobertCLL]

Did u have to take medical leave during the treatment period? My husband is concerned if he's able to continue working during the treatment

[RobertCLL in reply to gohmei]

No. I was retired at the time so I didn't have to worry about that. Just to add, during the treatment my blood counts remained at a reasonable level, so needed no medical intervention to help them (blood, antibiotics, GCFS). I have previously been treated with RFC and did need some additional support during treatment.

[GMa27]

2 friends of mine had BR. They are in remission and doing well.

Just make sure you have the Rituxin administered very slowly. Usually 4+ hours. Ask them how many hours they plan to do the R.

I had R and it went well and very slow- they gave me IV Benadryl before chemo and it was great- made me sleepy and relaxed.

Consider getting a port. Saves veins and keeps your hands free.

💕

[Canuck901 in reply to GMa27]

Great info , thanks for sharing

[Jacksc06]

I had 4 cycles of B +R around 3 years ago. approx 18 months remission. I had some fatigue and aching limbs but manageable.

[MorganNL]

I was treated with 6 months of Bendamustine and Rituximab in 2018 and did very very well with it. Am still in remission 1 1/2 years later🥰. I did record my journey on my page here in this group if you want to visit my page. I did have trouble with the Rituximab initially, but nothing serious.....the staff just had to give it slowly and gave me some IV benadryl and steroids to help. No problems at all after the second treatment 👏 Good luck 💕

[Ellieoak]

I had bendamustine without Rituxian because I had anaphylactic shock to the Rituxian. So I did 6 treatments with bendamustine. I had my treatments on Friday and then went back to work on Monday. The only side effects were mouth sores. They were pretty easy to deal with medication from the doctor. Put me in remission for 3 yrs. stay safe, Anna

[Pokerguy]

I’m currently on a six treatment regimin. Takes 5 hours to administer through IV drip. I’ve had two treatments with the third due Monday, each treatment spread 3 weeks apart. Other than extreme fatigue the only other symptom is a splitting headache for 2-3 days after treatment. Drink water, water and more water.

[Eric70]

I had this treatment 3 years ago and had quite a bad time of it. Ended up being admitted to hospital for 4 days and then several visits to A&E with problems. Symptoms were a red rash all over my body, very high temperature and saturating sweats. They first thought it was Sepsis, but it turned out to be a reaction to the Chemo. Also had severe constipation for a week after each treatment, I have spoken to others and they too had that problem, so do have some laxatives available. It was all worth it in the end, as I've been in remission now for 3 years and have just had a check up and everything is stable, even my immune system has recovered a wee bit. The very best of luck and I do hope all goes well for you. The hospital doctors told me it was most unusual to have such a reaction as I had, so I do hope that your treatment is plain sailing, as it has for so many others. Best regards Eric.

[Mik_]

I had such treatment about 8 years ego. I felt relatively good and worked full time first 4 months, travelled for business and Kayking at San Diego. However, at the end with accumulation it was heavier. Generally, it is nothing compared to R-Chop chemo. Take care, M

[JeannineMarie]

I am 18 months post b+r. It was a pretty easy treatment for me. Had a few problems but all was manageable. I too work a 40+ hour work week. Did not miss any days due to treatment. Matter of fact 99% of the people I work with did not even know I was in treatment and even now it is kept private.

The one thing to consider is getting a "port". Talk to your Dr about it. B+R did a number on my veins and now takes multiple sticks to get a vein and hope it doesn't collapse.

Very willing to answer any questions you may have. Please feel free to message me. Additionally I did not reach remission. 90% reduction in growth and no new growth currently.

Good luck! I will be praying for you.

[AdrianUK]

Hi, Can I suggest that you get a second opinion. It is such an important decision to both decide when to go with treatment and what to do that a second set of eyes and discussion is often really good. There are some great clinical trials for example. If your insurance doesnt allow for a referral and you are in the USA google CLL society as they offer a FREEE online web second opinion. In most other countries you should be able to request a second opinion or referral for consideration of possible trials from your current doctor or primary care physician. I am seen by a top centre (biggest in EUrope for blood cancer) but I still got two more opinions before starting. BR is rarely used these days as it is not as strong as FCR or the modern drugs. But that is not to say there might not be good reasons to use it in your case. Oddly it seems to be used more in the USA than the UK which is why I am guessing you are from there!

[Cindi73]

Just wondering if your husband was offered Imbruvica also called Ibrutnib instead of B/R? Wishing you and your husband the best. Cindi

[gohmei in reply to Cindi73]

Yes but I'm from Malaysia and ibrutinib is not covered by government. We had to bear the full cost of it unfortunately

[9229Schaeffer]

My mom is 86 and has had mantle cell lymphoma 9 years. Did standard Rchop Was in remission almost 3 years.

Mantle cell came back

Was put on imbruvica. It did not work for her. Lots of side effects

Placed on bendeka and rituxan for 6 mo followed by 18 mo of rituxan every 8 weeks.

Did really well. Tolerated Bendeka and rituxan fine.

Did fine with rituxan alone Labs were good

[kathymac52]

My husband did only four out of the six doses of B and R and it didn’t work for him. It put him in such severe neutropenia that lasted about five months. He is currently on in Ibrutinib and that seems to be working for the last two years.

[laldoroty]

Hi, I just finished 6 cycles of B+R 2 weeks ago. I am almost 80 with pre existing heart condition (mechanical heart valve 26 years ago). The initial treatment had to stop for about 1 1/2 hrs as I had a reaction to the R, so it took almost 8 hr. Subsequent cycles went faster and after my 3rd cycle the injected the R which really quickened the procedure. My oncologist also prescribed Lapelga self administered injection to be taken once 2 days after the cycle. this was to booster my immune system. During the cycles I experienced minor discomforts such as constipation, water retention and sleeping problems. I also had a bladder infection and a case of mild shingles. My blood tests have been good and after a CT

scan 2 months ago, the found my Spleen had gone back to normal size and my Lymph Nodes

in my stomach had shrunk to a normal range. I see my doctor in a little more than a week and

we will discuss how we will proceed. I hope this was a help and don't hesitate to ask any further questions. Good Luck

Leo

[Big_Dee]

Hello gohmei

I had all 6 courses of B+R and in second year of remission. Courses #1 & #2 were the worse, with rashes, hic-ups and fever. All were resolved within 1-2 weeks each time. Starting with course #2, I did additional Tylenol and Benadryl for 24 hours after treatments. This was with my doctors concurrence and helped resolve rashes and hic-ups. I spent 5 days in hospital with 103+ fever after first day of course #2 treatment. The fever was indeterminate and not sepsis. I am retired so did not have to deal with work issues. I was corporate compliance officer and could have done my job with some slack during treatment. Husband may want to request couple of days off after each treatment depending on any treatment reactions. I feel great. Blessings.

[IRN83]

I had 9 months of BR. I hate to say this but it was horrible. I had the BR regimen every 28 days and the treatments started on Monday, which was all day, days 2&3 were half days, followed by the shot On Thursday. The first cycle wasn’t too bad. I would get sick starting Thursday evening and would get well enough to return to work on Monday. But as the months progressed it took longer and longer too get well enough to return to work. By the end of the ninth month it would take 7 days before I could return to work. When I say well enough that is all I mean. It messed me up. Upset stomach, felt yuck, felt off, numbness in the fingers, food tasted wrong. When I finally started feeling better, 4 weeks later, it was time for the next BR cycle. I will say, life was miserable on BR (and FCR). I told my wife I would never do that again. And unfortunately for me I barely went two years before needing treatment again. I am no doctor, but I’ve had FCR, BR, Ibrutnib and just finished Venetoclax and Gazyva. The V & G was easy for me and the only treatment that got me to MRD NEGATIVE!🥳

I don’t know your situation but Personally I would highly suggest getting a second opinion. I don’t think BR is the best treatment available. And, I hate to tell you this, but for me it was worse than horrible. Something I will never do again and wouldn’t recommend for anyone. I don’t know if it is possible to search for people’s posts but I have a few posts that tell my experiences with each of these treatments.

Wish you the best. Sorry to be the bearer of bad news.

[Catnap7]

Hi Yes I had B and R. I never missed a day of work or a day of working out 👍

No problems there

THE problem... my remission was super short. Because of my 17p I should have gone the Ibrutrinib route. Found out later B and R doesn’t do much good for my numbers After my short remission I hung in there for as long as I could until I got into an Ibrutinib/venetoclax trial for relapsers After a year in my trial I got MRD negative 🎉and a deeper remission looks more positive

Best to you !!!!!! TAKE CARE

Catnap7

[humaniquarian]

I had the full 6 cycles of B&R ending Jan 2020 and am in remission ,

overall I had a fairly easy experience .

Only one day with a mild temperature. Definitely lost appetite and food was un appealing the entire 6 months , If you lose appetite , eat simply and ,Tapioca yogurt, pasta mash potatoes treat yourself to ice cream,

Eat anything that appeals to your taste buds.

I had one bout of heartburn, not too bad,

I did experience a drop off of energy, to be expected,

There were a few days during the 6 months that I was very sluggish,

It was winter time so not particularly conducive to going out much.

If I may , do try to go for gentle walks as often as possible, or any type of activity you prefer

I went into treatment in good health and good shape which helped

I did manage to go out and do hikes in the foothills here in colorado .

The first few days immediately following each round of treatment left me tired.

the cycle became clear:,

week one following treatment fatigued with usually one or two days very subdued

energy slowly returns along with a bit more appetite, food became unappealing but you have to get calories somehow, don't expect to be eating regularly , if you can that's terrific.

By week three to four feeling almost normal, but it's what i would call "Chemo normal"

I lost some muscle mass but i am not a big guy, 150 lbs I fluctuated a weight loss/gain of around 6 pounds .Lost 5 ,gained 5 lost 5 gained 5.

It's now 6 months since completion and i am back to full energy, extremely active again, actually regained the few pounds I lost. I've read the many responses to your query.

The obvious fact is that EVERYONE RESPONDS DIFFERENTLY and unpredictably.

The administering nurses are always there to respond immediately.

the nurses that work in the infusion centers are attuned to the fact that you have cancer and are typically very compassionate

I had trepidations, as I think many do,

. My oncologist supported my concerns and said

"we'll get you through anything that comes up" For me that was very re-assuring. I did not have any adverse response during the IV infusions and I declined the port, I did not want a port in my body for 6 months, The injection sites did become a bit irritated during the 6 hour drips ,I alternated left arm right arm etc. I did fine with no port. they can be troublesome and sometimes get infected.

My blood levels responded after first round of treatment and continued to show positive decrease in tumor load every month for 6 months.

Chemotherapy overall, is not something anyone wants to do, but I see that most if not ALL of the responses on this blog indicate remission after treatment is over.

I hope you do well , you can expect a few rough spots, I think that may be inevitable. I'll look to see positive results for you in the future.

Regards

Robert

[Big_Dee]

Hello gohmei

I should have echoed "drink water, lots of water" Usually 64 fluid oz. a day. The water will flush the B+R from your system and protect your kidneys from uric acid. I also should have added that I had neulasta shots starting after courses #2 thru #6 this brought my blood numbers within normal within 2 months. I am in deep remission and do not technically have CLL any more. I am un-mutated so can expect 3 1/2 years before relapse, in my case maybe much longer as FISH DNA now normal. Blessings.

[Tom8O]

A second opinion can’t hurt. My local doc wanted to do BR but got a second opinion from a CLL specialist at MD Anderson, which led to going on Ibrutinib 2 1/2 years ago and I’m doing great on it.

MD tested for IGHV which was not done locally - I am unmutated - BR works better for mutated.

Things change so rapidly and there are a lot of great choices out there. My doc who initially said BR is going right to Venetoclax for newly treated patients.

[DJ99]

Hi there, I recently finished 6 cycles of B&R ending Feb 2020. I'm in my late 40's and found it very unpleasant but I was functional only missing 3 days of work each month (cycle). I'll first qualify like everyone else that everyone is different and this was just my experience. .... For me, days 3-10 were bad with lots of vomiting, insomnia, couldn't drink anything, constipated and yet was constantly hungry. In short was a mess. The following week most of side affects disappeared but felt really beat up. By the third week I felt pretty decent and the last week I felt totally fine which was just in time for the next round. Was pretty much this way for each round. The last 2 weeks of each round I squeezed in a lot of exercise which helped quite a bit. The Bendamustine really burned my veins and I had to switch sides each month. By the last two rounds my veins went into hiding and took 4-5 pokes which was not so fun. The good news is that my blood levels are now all back in the normal range and hope I stay that way for a while.

[Jemorgen]

I had BR last July to Dec 2019. I wrote about my experience which you can access if you click on my profile.

[DaniCa228]

Is your husband seeing a CLL specialist? If not I highly recommend for him to talk to one prior to starting treatment. Check out the CLL Society’s website. They offer a free phone consultation with a CLL specialist. Local hem oncologist may not be up to date on novel treatments that don’t involve chemo.

[attarintiki]

In jan & Feb 2019 i had 2 cycles of BR out of planned 6 cycles. After 2 wks of 2nd cycle I have developed severe skin itch more on face and shoulder. I was told its due to side effect to Bendamustine , increased eosinophils (Eosinophilia Folliculitis) But the good news was that With 2 cycles only I have good remission from CLL (for time being ) with my blood parameters back to normal . My genral condition is good. But I am continue coping with my skin itch. However you may not have any problem as BR works differently for different people. Hope you will have a smooth sailing with BR. Good luck.

[Aliciag1985]

Would you mind saying what you markers are? My partner 11q deletion and BR was 1 of the options but was recommended not to do BR

[gohmei]

All I know is he's CD5 negative, which Dr said is a good prognosis

[Professors]

Last week I had my first treatment with Ruxience and Bendeka. First day 6 hours of Ruxience and two days of Bendeka which took about 3 hours each day. The side effects were minimal, with some stomach discomfort and tiredness. I noticed an improvement in swollen lymph nodes under the arms and neck region. Able to eat small portions, but the trick is to push the fluids, lots of water. Hoping for the best. Best of luck.

[gohmei]

Thank you Prof, wish u continue to have a smooth treatment journey.

[mkawass]

Ho gohmei,

I have written in extensive details about my father's experience with CLL and BR in this thread:

healthunlocked.com/cllsuppo...

and

healthunlocked.com/non-hodg...

You will find many things you want to keep an eye on and ask the doctor about such us the tumor lysis syndrome, immunosuppression side affects...look for replies under my user name: mkawass. If you have any questions, please let me know.

[gohmei]

Thank u mkawass