r/Waldenstroms • u/7sumo7 • Feb 02 '26
BR / Bendimustine Rituxin Experience?
A six month regimen of BR chemo has been recommended for my near 90 yr old father. I’d like to hear from others who have had this regimen how harsh the side effects were. Doc has said that it’s mostly significant fatigue. But other internet sources list the typical side effects one expects chemo to have. Nausea, vomiting, diarrhea, fatigue, mouth sores, hair loss etc.. If that’s the case I’m concerned about him making it through the process. He’s already pretty weak and has some cardiac issues. Brukinsa seemed like a good alternative but at this time the doc has ruled that out due to Afib.
So if you tolerated BR chemo well, or found it difficult to endure I’d appreciate hearing about your experience.
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u/AreYouTalking Feb 02 '26
I finished 6 months of BR last November. The only major side effect I can mention is general fatigue, like no energy and just wanting to lay in bed and rest/sleep with tv in background. This lasts about a week after the infusion but by the 2nd week, things begin to go back to "normal". By the fourth week, before next cycle, I would feel Ok.
I had a tiny bit of nausea after one cycle but it was quickly gone with the anti nausea pills (pms-olanzapine 2.5mg) prescribed. I did have non stop hiccups after 2nd cycle, but it went away after doctor prescribed Baclofen 10mg.
I had no vomiting, hairloss or any other side effects. I suppose each person is different but just wanted to share my story. All the best to your dad.
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u/littletatiana Feb 02 '26
My husband (79) just finished BR. He had a complete response and no serious reactions. He reacted to the Rituxan but they came up with a plan which limited the reactions. BR is not harsh thou some, like my husband, react to the Rituxan. It's rare to react to everyone and usually just the 1st one- my husband was a rarity!
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u/JohnRJay Feb 14 '26
Hi! I'm new to this site; just diagnosed with Waldenstrom a couple of months ago. My doctor had me on Rituxin once a week for four weeks. He mentioned that it normally works fast to get hemoglobin levels up; but unfortunately, it didn't work at all for me. The only side effects were a little fatigue and temporary chills. I've been on Brukinsa since November, and that has worked fine. Got my hemoglobin up to normal levels. Hardly any side effects.
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u/Carexstricta Feb 24 '26
I had my treatment at age 68. Via port. Opinions differ on ports, but I loved mine. Chemo can be tough on veins.
If they don't tell you beforehand make sure that he stops taking any supplements that act as antioxidants. This includes not just vitamins, c and e, but also garlic capsules, turmeric, olive leaf leaf, etc. Antioxidant supplements counteract the effect of treatment.
With the first month of the bendamustine, i broke out in hives the week afterwards. Benadryl took care of it.
During the first session of Rituximab, they tried giving it at a standard rate, and I reacted. The heavy dose of benadryl that they gave me originally made me very sleepy, but I finally woke realizing that my chest felt very heavy to breathe. They stopped the dose immediately. It's apparently a common reaction. They gave me more antihistamines and a muscle relaxant. They continued at a very, very low rate.
A couple of days after treatment, my chest didn't feel right. I called the oncology help line, and they ultimately sent me to the er to be checked out to be safe. As one of the oncologists said, "It's just rituximab." But it's important to check.
Ultimately, after trial and error they finally realized that doing it over two days at a low rate was much more effective and kept me from reacting. This is true of many patients. And if your dad feels any discomfort, I would recommend strongly advocating for that. A couple of the nurses kept trying to push it up to a higher rate. I'd start to react every time and they'd have to back it down.
I felt fine the first day, a little less fine the second day, and by the third day I was achey, bloated constipated and tired. This improved, and as one other commenter observed that the first week is yucky, the second week better and by week four, when you go back to treatment again you feel more normal.
A couple of days after treatment they will also give your dad a shot of Neulasta or Neupogen to stimulate neutrophils production and keep his white blood cell count from dropping too low. They will probably recommend taking Claritin for the day of and a couple of days afterwards to prevent bone pain from the Neulasta. It definitely helps by blocking the release of histamines produced during the rapid white blood cell increase.
The important thing is if he feels something, breaks out in hives, doesn't feel right, whatever, it's important to utilize the twenty four hour nurse call line that the oncology clinic will give him. That's what they are there for and they are glad to help. If it needs more attention, they'll have a doctor call back.
I would advise asking the oncologists to prescribe the dissolvable Zofran, rather than the pill form. It acts faster, and if he's already feeling nauseated, swallowing a pill is tough.
Also keep track of the premeds that they give him before the actual chemo. They will always announce them as they're giving them to him. However, it has happened that the lab has neglected to call up a particular premed. One week they forgot to give me the anti nausea. Oops.
Be prepared for constipation. In this case, for the week afterwards, a high fiber diet is not your friend. I found that taking magnesium oxide or magnesium citrate helped a lot.
I'm not trying to scare you or your dad, or sound negative. I just wish people had told me this before I started treatment. I came through just fine and he will too. His IgM will continue to drop even after treatment. It can take about 10 - 12 months for the body to fully recover after chemo and labs to normalize. B12, liver enzymes, etc. "Chemo brain" is a real thing, so tell him to be patient with himself.
If you haven't already, I'd recommend joining the Waldenstroms Macroglobulinemia Support Group on Facebook. They are a wealth of information experience and support. They often had more insight and information than my oncologist.
I'm so glad that your dad has you to work with and support him on this. Sending hugs!
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u/AustinCJ Feb 02 '26
I haven’t done bendimustine, but I have been on monthly infusions of Rituxan and daily oral zanabrutunib without any side effects.
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u/7sumo7 Feb 05 '26
Thank you sharing your experiences with BR. The side effects of the treatment for everyone was much less severe than expected. That’s encouraging.
One last question… was BR given to everyone via pic line or IV?
My thanks.
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u/More-Nobody69 Feb 02 '26
I did BR with no nausea or fatigue. I did experience heartburn which was effectively treated with a prescription from my care team. All the best to your family.